autism extended essay

Autism Spectrum Disorder (ASD) Essay

Introduction, biological and genetic aspects of autism spectrum disorders, asd etiology, prevalence of asd, diagnosis of asd, treatment of asd.

Autism is a serious disorder that has the potential to disrupt the success of people living with it. This report shall set out to explore various aspects regarding this disorder. To this end, an overview of the symptoms, causes, diagnosis and treatment shall be offered. This shall aim at expanding our understanding regarding this disorder so as to enable us to be better prepared to handle it whenever the need arises.

Autism has been noted to be among the most prevalent childhood psychiatric disorder. Kuder (2003) denotes that in the USA, an estimated 2.1% of the population aged between 8 and 17 is affected by autism in its various forms.

Autism is manifested by varied behavior but it is chiefly characterized by inability to communicate, lingual deficits, lack of a sustained attention, low level of activity, temper tantrums, sleep disturbance, aggression inadequate motor control and other non-compliant behavior. These behaviors are detrimental to the social and educational endeavors of the people involved.

Autism spectrum is a medical term that is used to describe children and adults who experience difficulties in motor coordination, socializing, communicating (verbal and non-verbal) and language acquisition (Tager-Flusberg, Paul and Lord, 2005). The authors describe autism as a neurological disorder that stems from the brain’s inability to carryout some functions normally.

The causes of Autism as well as the reasons why it affects lingual and communication skills are not entirely known though there is a close linkage between Autism and genetics.

Studies indicate that Autism Spectrum Disorder (ASD) is inherited between family members. A study conducted by the American Psychiatric Association (2000) indicated that there is a 3-6% chance of getting autism amongst siblings.

However, Korvatska et al (2002) state that the difficulty experienced by scientists in pinpointing the genetic aspects of autism emanates from the lack of extended family histories. In most cases, autistic individual become more detached socially that they rarely marry or have children. As such, finding a family that has detailed genetic information regarding autism is difficult.

On a brighter note, twins have been used to explore the genetics behind autism (Beaudet, 2007). One study indicated an 82% likelihood of an autistic identical twin having the same disorder. This is in contrast to the 10% likelihood indicated by results from fraternal twins. More sophisticated studies have in the recent past concluded that 90% of autism related behavioral phenotypes are as a result of inherited genes (Happé & Ronald, 2008). This shows that there is a strong relationship between autism and genes.

Biologically, the root cause of autism has been difficult due to relative inability to access and study the brain systematically. However, technological innovations and advancements such as MRIs, CT scans and SPECT have made it possible to study the structure and functionality of the brain.

As a result, specialists have been able to deduce that majority of the brain’s structures play a pivotal role in the development of ASD. According to NIMH (2009, p. 1) they include but are not limited to “the cerebellum, cerebral cortex, limbic system, corpus callosum, basal ganglia, and brain stem”.

Similarly, other studies indicate that various neurotransmitters such as serotonin and epinephrine have a strong link to autism. The diagram below shows the biological basis of Autism Spectrum Disorder. It shows various structures of the brain and explains the functions that each play. Various symptoms of ASD are as a result of the structures’ inability to carry out their normal function.

A diagram showing brain structures linked to ASD

As mentioned earlier, the causes of ASD are not well known. However, researches conducted in this regard indicate that genetic, nutritional and environmental factors play a pivotal role in the development of the disorders. Results from numerous studies indicate that genetic factors predominate.

Others indicate that certain foods, infectious diseases, plastic and metallic extracts could cause autism. Similarly, smoking, alcohol, illicit drugs and some (mercury-based) childhood vaccines have also been attributed to causing autism. However, none of these causes are conclusive and more research needs to be conducted. This is to mean that the theory of causation regarding autism is not complete as yet.

The most recent survey conducted by center of disease control (CDC) indicated that autism rates have increased significantly over the past three decades. In most cases, studies indicate that autism is most prevalent among children. According to Rutter (2005), boys are four times more likely to be autistic than their female counterparts.

In addition, the author states that the symptoms of autism exhibit themselves from childbirth until three years of age. Parents are the most likely to discover these symptoms. As a result, they should ensure that they have their children checked at the onset of various abnormal behaviors.

Rutter (2005) asserts that the prevalence of autism disorder has been facilitated by ignorance and assumptions made by caretakers. In some cases, parents assume that their children are ‘slow and that they will develop as they grow up. However, this approach has proven to be costly since autism can best be handled as soon as it is detected.

Delaying makes it difficult to come up with remedies and coping mechanisms for both parents and the individuals having autism disorders. The main symptoms of this disorder include communication (verbal and non-verbal) difficulties, inability to develop and maintain relations with other people, abnormal lingual patterns and repetitive behaviors. Whenever any of these symptoms are discovered, it is highly recommended that medical or psychiatric assistance be sought.

An early diagnosis of ASD is important since it enables the people involved to come up with effective interventions before its too late. Recent studies show that intensive interventions administered in a control environment for a minimum of two years during preschool leads to behavioral and social improvements among children with ASD.

Clinicians base their diagnosis depending on the behavioral traits exhibited by a child. For a diagnosis to be made, NIMH (2009) asserts that at least one of the symptoms associated with ASD must be present. This means that a patient must have abnormal patterns of communication, socialization and restrictive behaviors.

In most cases, the diagnosis is made through a two-stage process. The first stage is “a developmental screening normally conducted during the routine childhood check-ups, while the second one involves a more comprehensive behavioral analysis by a team of experts (NIMH, 2009, p. 1).” Below are the stages that are followed to diagnose ASD.

The American Psychiatric Association (2000) recommends that every parent should ensure that a developmental screening test is carried out for his/her child during the “well child” check-up. The author contends that screening plays a pivotal role in the early identification of ASD symptoms.

Due to its importance, there are various screening instruments that have been developed to facilitate the diagnosis process. They include but are not limited to Checklist of Autism in Toddlers (CHAT) and its modified version; M-CHAT. Similarly, the Screening Tool for Autism in Two-Year-Olds (STAT) as well as the Social Communication Questionnaire (SCQ) have proven to be effective in diagnosing ASD in children aged between two years old and above four years old respectively.

According to Tadevosyan-Leyfer et al (2003), questionnaires given to parents provide important information during the diagnosis process. As such, some instruments rely on such responses while others depend on these responses as well as observations made by the caregiver. However, these screening instruments are not as effective as they should be when it comes to identifying mild ASD or Asperger syndrome. As a result, other screening instruments such as the Autism Spectrum Screening Questionnaire (ASSQ) and the Childhood Asperger Syndrome Test (CAST) among others have been developed so as to diagnose these forms of ASD (NIMH, 2009).

Comprehensive Diagnostic Evaluation

This is the second stage of diagnosis and it relies on the skills of a team of different experts such as psychologists, psychiatrists, neurologists, and therapists among others. This evaluation entails a comprehensive analysis of neural, genetic, cognitive and language testing in order to conclude whether a patient is suffering from autism or other behavioral disorders.

Some of the instruments used at this stage include: Autism Diagnosis Interview-Revised (ADI-R), which is a structured interview designed to test a child’s “communication, social interaction, restrictive behaviors and age-of-onset symptoms, and the Autism Diagnosis Observation Scheduling (ADOS-G), which is designed to identify abnormal, missing or delayed communication and social behaviors (NIMH, 2009, p. 1).”

The teams of experts that conduct this diagnosis determine the strengths and weaknesses of the child and recommend various treatment options that should be undertaken.

According to Freitag (2007) there is no one-shoe-fits-all approach to treating ASD. However, specialists in this area seem to agree on the fact that early interventions are of great importance. Arguably, the best treatment is one that considers the interests of the patient, allows the patient to learn in accordance to his/her ability and causes no harm to the overall well being of the patient. With this in mind, there are specialized programs and treatments that have proven to be effective against ASD symptoms.

For starters, Applied Behavioral Analysis (ABA) is among the most used intervention in treating ASD (SAMHSA, 2011). Similarly, there are dietary and medical interventions that help suppress unwanted behaviors among autistic children (NIMH, 2009). In regard to learning, there are specialized educational programs that seek to enhance the socio-communicative, cognitive and language skills of autistic students.

It can be articulated from this report that Autism is a problem that needs to be focused on. With proper understanding as to what the condition entails, parents and practitioners are better armed to assist patients overcome the weaknesses brought about by the condition and therefore achieve successful lives.

From this study, it can be authoritatively stated that early diagnosis and treatment of Autism spectrum is necessary to increase the chances of success in learning for the child suffering from this disease. Whereas Autism is not curable, it can be managed so as to ensure that it is not disruptive to the life of the individual during his/her future endeavors.

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders: DSM-IV-TR (fourth edition, text revision). Washington DC: American Psychiatric Association.

Beaudet, A. L. (2007). Autism: highly heritable but not inherited. Nat Med, 13(5): 534–6.

Freitag, C. M. (2007). The genetics of autistic disorders and its clinical relevance: a review of the literature. Mol Psychiatry. 12(1): 2–22.

Happé, F., & Ronald, A. (2008). The ‘fractionable autism triad’: a review of evidence from behavioral, genetic, cognitive and neural research. Neuropsychol Rev, 18(4): 287–304.

Korvatska, E et al. (2002). Genetic and immunologic considerations in autism. Neurobiology of Disease , 9: 107-125.

Kuder, S. (2003). Teaching Students with Language and Communication Disabilities. USA: Allyn and Bacon.

NIMH. (2009) Autism Spectrum Disorders (Pervasive Developmental Disorders) . Web.

Rutter, M. (2005). Incidence of autism spectrum disorders: changes over time and their meaning. Acta Paediatr. 94(1): 2–15.

SAMHSA. (2011). Autism Spectrum Disorders . Web.

Tadevosyan-Leyfer, O et al. (2003). A principal components analysis of the autism diagnostic interview-revised. Journal of the American Academy of Child and Adolescent Psychiatry, 42(7): 864-872.

Tager-Flusberg, H., & Lord, C. (2005). Language and Communication in Autism. Web.

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• Feb 17, 2023

The Great List of Autistic Essays

I’m a late-identified autistic who loves writing about autism. How much do I love it? I’ve written over 150 essays on it in the past six months alone.

How do I think of so many autistic topics to write about? I’m an art therapist who specializes in late-identified autistic adults. That means I not only have my personal experience to draw from, but also the hundreds of hours spent listening to my clients.

I share most of my essays here on Medium, which means it has now become quite the library. In an effort to make my essays more accessible to those wanting clear, relatable information about late-identified autism in adults, I’ve sorted my essays into topics below. While I wish I could provide a link to each of them for you… I’ve got to prioritize my time and energy. So if a specific essay interests you, just pop it into the search and it’ll come up

Autism in a Neurotypical World

What Would a World Designed by Autistic People Be Like

The Harm in "They're a Little Autistic"

Autism Does Not Directly Cause Socializing Problems

Please Trust My Lived Autistic Experience

Can Someone Please Create a Neurodivergent Intentional Living Community

What if I Accept that Most Neurotypicals Won't Like Me

How Neuro-Bias Shows Up in Professional Testing

Your Autistic Experience Sounds Just LIke my Neurotypical One

Neurotypical Words that Don't Work for Autistics: Overachiever

But Neurotypicals Experience That, Too!

Neurotypical Norms That Don’t Work for Autistics: Hustle Goals

The Fear of Being a Hypocritical Autistic

Neurodiversity: Us vs Them?

How to Meet an Autistic Adult Exactly Where They're At

Autism Characteristics

The Autistic Mind Loves to Take Detours

4 Reasons Why Autism Symptoms Lists are Confusing

My Autistic Brain: Sunshine and Detours

The Joys of Being Autistic: Part 1

Stop Saying Autistic People Can't Empathize

Redefining Fun for Autistic Adults

9 Reasons Why Autism Looks So Similar to CPTSD

We Need More Depictions of the Interior Experience of Autism

Clarity is What my Autistic Mind Craves

How Trauma and Autism Can be a Confusing Mix to Decipher

Why am I like This? Understanding the Autistic Brain

My Autistic Mind Does What it Wants

The Dissociated Autistic Performance State

The Joys of Being Autistic: Increased Creativity and Innovation

My Autistic Memory Is Not the Same as Others

The Firehouse Dilemma: Autism and Infodumping

The Variability of the Autistic Sensory System

5 Reasons Autistics are Especially Hard on Themselves

The Shame That Often Accompanies Autism

Knowing You’re Different as an Autistic Adult

3 Reasons Autism is Worse After You Learn You're Autistic

Disability and Internalized Ableism

I Had to Dismantle My Fear of Autistic People

Is Autism a Disability?

I’m Ok With Saying I have a Disability, Right?

Dog Training

The Difficulties of Adjusting to a New Dog When You're Autistic

Tips for Adjusting to a New Dog When You're Autistic

5 Tips to Integrate a Dog into Your Autistic Life

Defining and Explaining Autism

What I Wish Others Knew About Autism

Let’s Drop the “Disorder” From Autism Spectrum Disorder

How Low and High Autism Labels are Misleading

We Need All the Autism Theories and Models

Autism Can Be a Murky Thing To Understand

How I Explain Autism to Someone Unfamiliar With It

What is Late Identified Autism

Autistic Statistics are Not Accurate for Late-Identified Autistics

I'm Here for the Autistic Awakening

How It Helps to Know You’re Autistic

Why It Matters to Know You're Neurodivergent

What is Neurodiversity and Why Does it Matter

How Neurodivergent Acceptance Can Improve Our Lived Experiences

How Unidentified Autistics are Taught to Socially Camouflage and Mask

Is There a World Where I can Be Unmasked?

The False Dichotomy of Masked and Unmasked Autism

6 Reasons Why UnMasking Is Harder Than it Sounds

What if You have to Mask Everywhere?

My Personal Experience as an Autistic

Hating Cooking as an Autistic Adult

I Make Giant Lists About Autism for Fun

The Challenges of Writing Publically About Autism

The Risk of Sharing my Autistic Passions with Others

I'm Reclaiming Weird for My Autistic Self

I Expand and Then I Contract

I Stopped Seeing Myself As Broken When I learned I was Autistic

Respecting my Limits as an Autistic Business Owner

I Need to Lessen the Pressure on my Autistic Self

My Autistic Brain Doesn’t Want to Watch TV Right Now

Embracing Who I am as an Autistic Adult

I Used to be a Very Judgemental When I Didn’t Know I was Autistic

A Letter from An Autistic Adult to Trust

Don’t Get So Upset: A Line that Doesn’t Work for This Autist

Why This Autistic Writer Didn't Respond to Your Comment

Relationships

Is Dating Worth it as an Autistic Adult?

Is it Possible to be Happily Partnered as an Autistic Adult?

Not Liking People as an Autistic Adult

Self-Identification

So You Think You Might Be Autistic

Dearly Newly Identified Autistic Person

Am I Actually Autistic?

Dearest Smart, Weird, and Caring Autistic

I Am Deeply Unsure About Autism

How to Self Identify Autism as an Adult

When the Past Makes Sense after a Late-Identification of Autism

Where to Start When You First Learn You’re Autistic

6 Strategies to Harness the Hyperfocus Power of an Autistic Mind

Leave the Gremlin In the Cave: Self-Isolation as a Necessary Autistic Tool

No Plans Days as an Autistic Tool

Making Accommodations for Myself as an Autistic Adult

How Many Accommodations Can We Ask for as Autistic Adults?

Using Art to Help Your Autistic Mind

Dissociation as an Autistic Tool

The Power of the Home Environment for Autistics

Is It Ok to Honor My Autistic Needs?

Recognizing When It's Not Time to Make Decisions as an Autistic

Therapy for Autistics

Dearest Autistic Client of Mine

8 Ways Therapy Can Help With Late Identified Autism

Gaslighting the Autistic Experience

Dearest Therapist Who Knows Barely Anything About Autism

I'm an Autistic Therapist: Sometimes It's Easier Than Everyday Life

Does Your Therapist Know Enough About Autism to Help You?

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The Harm I Caused When I Didn't Know about Autism

A Newly Identified Autistic Therapist Working with Newly Identified Autistics

Common Therapy Advice That is Counterproductive for Autistics

A Therapist Told Me Treating Autism is Like Treating Depression

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Autistic Adults Deserve Better from the Mental Health Field

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The Correlation Between Intelligence and Undiagnosed Autism

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The Gap Between “Diagnosable Autism” and a Lifetime of Unidentified Autism

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Autistic Stereotypes Block People From Knowing They're Autistic

Thank you for reading. If you’d like to read more, sign up for my FUNletter . If you would like to explore your autistic identity with an autistic therapist, you can learn more about my therapy services here .

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Educational Interventions for Children and Youth with Autism: A 40-Year Perspective

• S.I. :Autism in Review: 1980-2020: 40 years after DSM-III
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• Published: 18 April 2021
• Volume 51 , pages 4354–4369, ( 2021 )

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Commemorating the 40 th anniversary of the Diagnostic and Statistical Manual (DSM) III, the purpose of this commentary is to describe school-based and school-relevant interventions and instructional approaches for children and youth with autism that have been developed and employed during that time period. The commentary begins with a brief description of foundational research that provides an historical context. Research themes shaped by science, ethics, social policy, and the changes in the DSM provide an organization for describing the evolution of intervention and instructional practices over the four previous decades. The commentary concludes with a discussion of school-contextual variables that influence implementation and the promise of the “iSciences” for closing the research to practice gap in the future.

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In 1980 the American Psychiatric Association was finalizing diagnostic criteria that would shape the face of autism Footnote 1 in the future, and public schools in the United States (U.S.) had been offering educational services to children and youth with disabilities, as mandated by a federal law, for about four years. At that time, autism was a very low-prevalence disorder, occurring in only 2–5 children per 10,000 (National Research Council, 2001 ). Autism had not been established as an eligibility category for receiving special education services, although autistic children and youth were enrolled in special education under other eligibility definitions (e.g., mental retardation, other health impaired, severe emotional disorder). Across these years, the intervention landscape in education has changed drastically. In 2018, public schools in the United States provided special education services to 663,098 school-aged children and youth with autism (U. S. Department of Education, 2021 ), as compared to 18,903 in 1993 (U. S. Department of Education, 1995 ). As the context has changed over the years, important intervention practices have evolved– shaped by science, ethics, policy trends, and the changes in the Diagnostic and Statistical Manual (DSM). The purpose of this commentary is to examine this evolution, highlighting practices and interventions that have become, or could become, the technology and tradecraft of education as it is provided by U.S. educational systems. Although the educational system in the United States is the focus of this review, we propose that the evolution and identification of current practices has implications for the broader international context.

In the initial section of the paper we briefly describe the historical scientific precedents to practices that emerged in the intervention literature. The second section of this commentary will identify practices organized within themes and influences in education and intervention research over the last 40 years. The commentary will conclude with discussion of the research to practice gap and factors in the context of public schools that affect adoption and implementation.

Parameters of the Commentary

This paper is a commentary and not a systematic review. As such, it represents the perspectives of an informed research group that has decades of experience conducting and publishing research on school-based interventions for autistic children and youth. The grade range and approximate ages of participants extends from preschool, which begins at age 3, thorough graduation and post-school transition programs, which can be up to age 21. Discussion of early intervention for autistic children below the age of 3 and their families is not included in this review because usually state Departments of Education (i.e., the public schools) are not the lead agencies, there are different federal regulations, and the service context is quite different from school-based intervention. However, there are times that intervention practices overlap and are relevant for both early intervention and school-based programs. Last, we plan to draw content for the commentary from peer-reviewed journal articles although we will refer to landmark books or book chapters when relevant.

In this paper, we distinguish between intervention or instructional practices and comprehensive programs (Odom et al., 2010 ). We define practices as actions by teachers or other service providers, activities, and/or organizations of the environment to address a specific goal or outcomes (e.g., communicate in three-word sentences, social interaction with peers). Practices are more time-limited than programs in that they tend to be used until a specific learning goal is met. Comprehensive programs consist of a set of practices organized by a conceptual framework, cover multiple developmental or skill domains, are intensive (e.g., 20 + hours per week), and extend across a substantial period of time. In the commentary we will focus primarily on a discussion of practices.

Historical Precedents to Education Interventions

Diagnosis of a condition such as autism implies that there should be a way of intervening to prevent, ameliorate, or improve the condition. The most well-known early programs for children with autism were based on different theoretical models. Following a psycho-analytic model, Bettelheim ( 1967 ) theorized that autism resulted from emotionally cold mothers and their failure to establish relationships with their children. His “treatment” involved removing the child from the toxic maternal influence (i.e., a parentectomy) through enrollment in a residential program, with many parents later reporting iatrogenic effects for their children. In 1968, Churchill, Ferster, and DeMyer (1971) convened a colloquium at Indiana University Medical School to report and reflect on the most current research of the time. In addition to a discussion about the need for reliable diagnostic criteria for autism (i.e., a foreshadowing of the DSM process), two researchers described theories and intervention practices that countered Bettelheim’s psychogenic approach. Ivar Lovaas ( 1971 ) described the remarkable success of his application of behavioral principles to teaching strategies for young children with autism, which laid the groundwork for the intensive behavior therapy movement described in the next section. The second pioneer at the Indiana Colloquium was Eric Schopler (Schopler & Reichler, 1971 ) whose research was actively involving parents in their children’s learning and development. He and colleagues also designed environmental accommodations that would make learning and independence in classrooms more feasible for autistic children. These techniques evolved into the TEACCH program that is used frequently in the U.S. and internationally. In most programs for children and youth with autism today, one can identify practices that can be directly traced back to these early pioneering approaches.

By the year 2000, knowledge about instructional and intervention practices for children with autism had accumulated, and the National Academy of Science convened a committee to review the then current research. They produced an oft-cited and influential report entitled Educating Children with Autism (National Research Council, 2001 ). The report identified and described a variety of comprehensive programs for children with autism, many of which were operating in lab or community school settings. Importantly, the committee also identified effective, empirically-based intervention practices that focused on key areas of development of children with autism (e.g., social, communication, etc.), and specified the importance of intervention intensity (e.g., provision of services at least 25 h per week). The push of evidence-based medicine (Sackett et al., 1996 ) and requirements of federal law, extended the focus on evidence-based practices as the basis for education intervention. This evidence-based practice movement is described in a subsequent section and is a primary theme of current intervention practice in education.

Key Themes in Education for Autistic Children and Youth

As noted, the last 40 years has brought about significant changes in the types and quality of intervention practices available for use in educational programs for children and youth with autism. Key themes that reflect these change are related to adult-led and naturalistic forms of instruction, education in inclusive settings, forms and functions of communication, use of aversive strategies and positive behavior intervention and support, collateral mental health conditions, postschool outcomes, technology-assisted instruction and intervention, ineffective interventions, and search for evidence-based practices. In this section of the commentary, we will use these themes as an organizational framework for describing educational intervention approaches.

Adult-led and Naturalistic Forms of Instruction

In the 1980s, educational interventions for autistic children and youth were heavily adult-directed and based on applied behavior analysis (ABA). Over the last 40 years, adult-directed instruction has remained a primary education strategy, although “naturalistic” approaches have also emerged.

Adult-Directed and Discrete Trial Training

Drawing from the foundational studies in ABA (Wolf et al., 1964 ) and the elaboration of his own ABA work, Lovaas ( 1987 ) developed a discrete trial teaching program (DTT). In DTT, adults provide an instructional antecedent (i.e., teacher instruction), students emit a target behavior, and adults provide a consequence (potential reinforcer or error correction procedure) on a predetermined schedule (i.e., known as a three-term contingency). Usually adults provide a set of trials (i.e., call massed trials) targeting a specific skill. In Lovaas’ program, autistic children received a minimum of 40 h per week and had significantly better outcomes than autistic children who had received less intensive interventions of ten hours per week (Lovaas, 1987 ). The positive effects of this adult-directed approach were confirmed in a 4 ½ year follow-up of children in the study (McEachin et al., 1993 ) as well as international replications of the approach when conducted in schools (Eikeseth et al., 2002 ). As the outcomes of the research by Lovaas and colleagues became more well-known, parents began to advocate for use of ABA by school personnel, including through litigation (Yell & Drasgow, 2000 ). The use of DTT has become pervasive as an educational strategy. Discrete trials have been and continue to be used to teach many skills addressed in educational settings (Hall, 1997 ). More recent research conducted in schools has evaluated performance feedback on educators’ delivery of instruction (McKenny & Bristol, 2015 ), the effectiveness of extending one-to-one DTT to group instruction (Taubman, et al., 2001 ), and a comparison of immediate to delayed reinforcement on skill acquisition (Carroll et al., 2016 ).

Naturalistic Intervention

In the 1980s, researchers began to realize that the use of highly structured, adult-led DTT sessions as the primary approach alone had shortcomings, such as the failure to generalize learned skills, prompt-dependence, escape/avoidance behaviors, and the lack of spontaneous responding (see Schreibman et al., 2015 ). An alternative to adult-led intervention, incidental teaching was first established by Hart and Risley in 1975 with young children from low income families and later modified by McGee (1983) for children with autism. The intervention was still based on ABA, but “naturalistic” in that the antecedent was a motivating context (i.e., often in a typical classroom routine or activity), involved child-initiation of the targeted behavior (i.e., rather than responding to adult-initiated instruction), and provided access to reinforcers natural to the environment (McGee et al., 1985 ). Pivotal Response Training (Koegel et al., 1987 ) was an early application of such a naturalistic behavioral approach and more recently has been adapted for use as a classroom-based program for early elementary-aged children with autism (Suhrheinrich et al., 2020 ).

In 2015, researchers using naturalistic behavioral intervention approaches that were conceptually situated in a developmental theoretical perspective determined that their approaches shared many common features. They classified their interventions under an umbrella term called Naturalistic Developmental Behavioral Interventions (NDBI, Schreibman et al., 2015 ). These interventions employed the naturalistic behavioral intervention factors noted previously and incorporated developmental science in identifying the focus and scope of learning outcomes. Preschool examples of these included Enhanced Milieu Teaching (EMT) (Kaiser & Hester, 1994 ), Joint Attention, Symbolic Play, Engagement, and Regulation (JASPER; Kasari et al., 2006 ) and its adaptation for school settings (Advancing Social-Communication and Play (ASAP; Boyd et al., 2018 ), and the classroom versions of the Early Start Denver Model (Vivanti et al., 2019 ) and Pivotal Response Teaching (Suhrheinrich, et al., 2020 ). Despite the large body of evidence demonstrating the efficacy of NDBIs (Tiede & Walton, 2019 ), additional research is still needed to understand how to adapt NDBIs for older children, such as those attending K-12 schools (Schreibman et al., 2020 ).

Education in Inclusive Settings

In 2018, about 40% of autistic children who qualify for special education spend 80% or more of their time in general education (U. S. Department of Education, 2020) as compared to 9% in 1992–93 (U. S. Department of Education, 1995 ). One key influence is the broadened conceptualization of autism that identifies children and youth who do not have accompanying intellectual disability and who could benefit from the general education curriculum. With greater participation in general education has come a shift from a traditional life-skills intervention orientation to one that also includes a focus on academic and social skills (Spooner & Browder, 2015 ). A second key influence has been the Individuals with Disabilities Education Improvement Act (IDEA) (2004), which requires inclusion in the least restrict environment to the extent that an appropriate education can be provided in that context. Although a four-fold increase in inclusive placements have occurred over the 25 year reporting period just noted, it is also important to note that more than 60% of autistic children qualifying for special education are only partially included (i.e., less than 80% of the time) or are primarily in a self-contained special education class.

Intervention and Instruction in Content Areas

In addition to the more general foci on adult-directed and naturalistic interventions and instruction in inclusive settings, a large proportion of the intervention research literature has focused on specific areas of learning needs for students with autism.

Explicit Instruction for Academic Skills

A growing body of research demonstrates that a variety of intervention approaches may explicitly address academic and school related goals (Plavnick et al, 2015 ). For example, in their review of evidence-based practices, Steinbrenner et al. ( 2020 ) identified 25 practices that address academic and/or school readiness skills. Task analysis, direct instruction, response-prompting procedures (e.g., model-lead-test), visual supports (e.g., graphic organizers), modeling, and time delay are all practices that have been linked to growth in academic skills (Fleury et al., 2014 ).

Various intentional combinations of the above explicit instructional practices implemented in inclusive and self-contained settings have demonstrated the capacity to improve reading comprehension across core content areas (Knight & Sartini, 2015 ), writing (Asaro-Saddler, 2016 ), and math skills (King et al., 2016 ) for autistic students with and without intellectual disability. Furthermore, structured inquiry and explicit instruction of social studies content (Schenning et al., 2013 ) and science terms and their applications (Taylor et al., 2020 ) have promoted growth in these subject areas for students across developmental and functioning levels. Building these academic skills to each student’s potential creates a foundation that will support independent living and future educational and vocational choices.

Interventions to Promote Social Engagement, Skills and Relationships

Difficulties engaging in social interactions with peers and adults, as well as establishing social relationships has always been one of the defining features of autism. Intervention approaches that have been used in education to promote social outcomes for children and youth with autism often employ adult-led and individualized skill training, peer-mediated approaches, and group-based social skills training.

Adult-led Teaching and Reinforcement Interventions

Some of the earliest intervention research on behavior of socially isolated children (i.e., autism was rarely used as a descriptor early on), employed adult use of reinforcement contingent on interaction with peers (Allen et al., 1964 ). From the early studies onward, investigators have used a variety of prompting, direct teaching techniques, and reinforcement with individual autistic children and youth, such as approaching peers and sharing desirable items like candy for young children (Kirby & Toler, 1970 ) and video games with adolescent peers (Gaylord-Ross et al., 1984 ), teaching social skills using scripts to support and prompt interaction on playgrounds (Krantz & McClannahan, 1993 ), and directly teaching play skills (Haring & Lovinger, 1987 ). Most recently, researchers have used a variety of other instructional approaches, such as self-management, video-modeling, and social narratives, to effectively promote autistic children and youth social engagement with peers (McKeithan, & Sabornie, 2020 ).

Social Reciprocity and Peer-Mediated Interventions

In 1977, Strain and Shores published an influential paper noting that much of the previous social intervention research focused on promoting individual social behaviors rather than reciprocal social interactions, which is the more natural basis for social exchanges. In subsequent research, they developed a peer-mediated approach in which typically developing children socially engaged children/youth with autism in ways that led to reciprocal interactions (Strain, et al., 1979 ). The early peer-mediated intervention research did increase the reciprocal social interaction of autistic children (Odom & Strain, 1986 ) and more recently, Kasari et al. ( 2012 ) reported positive changes in peer social networks when a peer-mediated intervention approach was employed in schools. To extend the peer-mediated approach to support autistic children’s/youth’s social relationships, Haring and Breen ( 1992 ) designed a social network intervention in which social groups of peers supported social engagement in multiple activities during a school day. Both peer-mediated and peer-social network intervention have been adapted and employed in elementary (Kamps et al., 2015 ) and high schools (Carter et al., 2019), with this research literature remaining currently quite active (McKeithan & Sabornie, 2020 ).

Group-Based Social skills Training

For students with autism who are able to participate in psycho-educational group instruction, social skills training group interventions have been developed, more often for middle and high school age groups. Generally, the intervention is led by an educator, has a sequenced set of lessons, teaches specific skills (e.g., emotional recognition in others, problems solving in social situations), and may have homework assignments. Although these interventions have often been delivered in clinical setting (Jonsson et al., 2019 ), there are examples of social skills training programs, such as the Program for the Education and Enrichment of Relational Skills (PEERS®) (Laugeson et al., 2014 ), that have been employed in school settings, generating positive outcomes in terms of skill acquisition for participants with autism.

Forms and Functions of Communication for Autistic Children and Youth

Communication is an essential developmental skill with vast variation in patterns of acquisition and outcomes for students with autism (Tager-Flusberg et al., 2005 ). Communication interventions have evolved in the past 40 years from focusing mostly on oral “expressive” language outcomes to thinking in tandem about communicative form (e.g., sign, AAC) and function across pragmatic contexts, as well as building foundational skills (e.g., joint attention).

Communication and Verbal Language Skills

Interventions targeting verbal communication skills for students with autism have fallen into three categories: behavioral, developmental, and naturalistic (Sandbank et al., 2020 ). The earliest intervention approaches used ABA principles and discrete trial training, generating positive effects on expressive language in students with ASD (e.g., Reichow et al., 2018 ). An individual adult-led therapy approach, sometimes called a pull-out model and usually not as structured as DTT, continues to be a primary mode of speech therapy in schools. A variety of other approaches that include behavioral practices (e.g., antecedent-based interventions, video-modeling, functional communication training) have been shown to produce positive communication outcomes (Steinbrenner et al., 2020 ). Developmentally based approaches, such as SCERTS (Social-Communication, Emotional Regulation & Transactional Supports) (Prizant et al., 2003 ), have been applied with autistic students to address verbal communication outcomes. Although originally designed as a family based-model, Morgan et al. ( 2018 ) has documented the efficacy of SCERTS in schools. In general, developmental interventions have shown some positive effects on foundational social communication outcomes for students with autism but with little evidence of cascading effects on language (e.g., Sandbank et al., 2020 ).

An alternative approach to pull-out intervention, sometimes described as a “push-in”, is naturalistic in nature and focuses on the social and functional use of language in context. For young autistic children, NDBIs (see previous discussion) are often used to enhance language acquisition. Though widely supported by randomized controlled trials (Sandbank et al., 2020 ), these are more often employed in clinic or home settings rather than classrooms, with some exceptions [e.g., classroom applications of EMT (Dubin et al., 2019 )]. In current practice, service providers employ an individualized, eclectic blend of strategies from these behavioral and naturalistic approaches to target verbal communication skills.

Interventions for Nonverbal Children and Alternative and Augmentative Communication (AAC)

AAC is an alternative to teaching oral communication for autistic children and youth who are nonverbal (Iacono et al., 2016 ). Notably, there is also consistent evidence that AAC does not inhibit and often supports the development of spoken language for many autistic children with limited verbal communication skills (Schlosser & Wendt, 2008 ). AAC offers opportunities to build communication skills to augment limited spoken language, including no- and low-tech AAC (e.g., sign language), as well as high-tech AAC. Over the past 40 years, the proliferation of technology has changed options for AAC, especially high-tech AAC such as speech-generating devices (SGDs), which now include apps that can be used on tablets replacing dedicated SGDs (Lorah et al., 2015 ).

High-tech SGDs can be programmed for more diversity of vocabulary and communicative functions and have improved the communication of children with autism (Logan et al., 2017 ). However, it is critical to recognize that the SGDs provide an alternative mode of communication but may need to be paired with strategies to enhance communication use in typical contexts. Notably, recent work in schools has combined AAC more intentionally with other interventions such as peer-mediated intervention (e.g., Thieman-Bourque et al., 2017) and JASPER (e.g., Kasari et al., 2014 ) to increase communication of children with autism. Low-tech AAC has also proven effective, such as the Picture Exchange Communication System (PECS; Frost & Bondy, 2002 ). PECS uses ABA strategies combined with a concrete representation of physically exchanging symbols to support understanding of early communicative exchanges and contributes to positive gains in communication (Ganz et al., 2012 ).

Aversive Strategies and Increased Focus on Positive Behavior Supports and Intervention

Although challenging behavior is not a defining characteristic of ASD, limited social communication skills and the strong adherence to ritual and routine can lead to challenging behaviors for some autistic children and youth (Esteves et al., 2021 ). The effectiveness of ABA to reduce challenging behavior has been demonstrated through research spanning the previous 40 years (Matson, et al., 1996 ), with some of those interventions employing aversive consequences (e.g., water spray, lemon juice, mild shock) for extreme and dangerous behavior (Gerhardt et al., 1991 ). In the 1980s, concerns were raised about the confirmed misuse of aversive procedures with recommendations to disallow their use (Berkman & Meyer, 1988 ). Heated debates ensued in which some advocates proposed that individuals should have the right to effective treatment (which could include aversives) for serious challenging behavior such as self-injury (Van Houten et al., 1988 ). Opponents questioned the ethics of using aversives when alternative nonaversive intervention strategies were available (Horner, et al., 1990 ). A major contribution to current policies was the seminal work of Iwata et al. ( 1994 ), who demonstrated that challenging behaviors could serve multiple functions. This research paved the way for use of functional behavior assessment prior to designing any intervention plan (Horner et al., 2002 ).

The national Positive Behavioral Interventions and Supports (PBIS) movement arose out of the heated debates of the 1980s (Dunlap et al., 2011 ). The technology of PBIS included behavioral assessments that could identify the function the problem behavior, selection of strategies that would prevent a behavior from occurring if possible, and teaching alternative and adaptive behaviors rather than focusing solely on suppressing maladaptive ones. Data-based decision making, developing functional skill sets, and being respectful of one’s dignity serves as the guiding principles of PBIS today (Kincaid, 2018 ).

This positive approach to supporting individuals who displayed challenging behavior was appealing to many families and agencies, including the federal government. In the 1997 and 2004 reauthorizations to the IDEA, the U.S. Department of Education mandated that, when students display challenging behavior that interferes with learning school personnel must conduct a functional behavior assessment before developing a behavior intervention plan and consider positive behavior interventions to support the student. Although the possibility of using aversive intervention still exists when all other alternatives have been tried, the mandate changed the way schools responded to challenging behavior. Currently, many students with autism attend schools that employ School-wide Positive Behavioral Interventions and Supports (SWPBIS). This program focuses on a tiered set of interventions that begins with proactive, preventative strategies and moves to progressive more intensive behavioral interventions as needed. SWPBIS has been employed in more than 26,000 school across the United States (Sugai & Horner, 2020 ).

Collateral Mental Health Conditions

Across the decades, behavioral and educational intervention providers have taken a broader view of the factors associated with behaviors viewed as problematic (e.g., stereotypies, self-injurious behavior, tantrums and meltdowns), and there has become a greater awareness of mental health conditions as one of the possible underlying factors. In the DSM-5, the diagnosis of ASD includes the specification of association with another mental or behavioral factor when applicable (APA, 2013 ). Mental health conditions are highly prevalent in individuals with ASD and rates are higher than those in the general population. The highest reported conditions include anxiety, depression, ADHD, schizophrenia, sleep–wake disorders, conduct disorders, bipolar disorders, and obsessive–compulsive disorders (Lai et al., 2019 ). Although few school-based interventions target mental health, there are some exceptions. Cognitive behavioral/instructional strategies, including cognitive behavioral therapy, are identified as an evidence-based practice for mental health outcomes (Steinbrenner, 2020). While most evidence of cognitive behavioral therapy for anxiety has been clinic-based, recently studies have adapted interventions for the school settings and found positive effects. For example, Luxford et al. ( 2017 ) used the Exploring Feelings CBT to Manage Anxiety curriculum to teach students to understand and manage their emotions. In addition, a family- focused intervention, Facing Your Fears , has also been adapted for the school setting and incorporates parent educational sessions (Reaven et al., 2020 ).

Post-School Outcomes

The period of secondary transition for youth with autism and other developmental disabilities has changed significantly over the past 40 years. Although post-school outcomes are still less than optimal for this population, gains have been made. In the 1980s and early 1990s outcomes for young adults with autism were restrictive in nature, with most living at home and working in sheltered workshops or attending day activity programs. Today, postschool outcome data from the National Longitudinal Transition Study 2 (NLTS2) indicate that 21% of young adults with autism are employed full time in paid work in the community, with nearly 36% having attended a 2- or 4-year college after exiting high-school (Roux et al., 2015 ). Conceptual models of post-school transition have evolved over time, which has advanced the field. In the 1980s, early models of transition were uni-dimensional equating transition success with competitive employment (e.g., Will, 1984 ). In later years transition success was expanded to encompass community adjustment, which included not only a pillar of employment, but also pillars of community living and social networks (Halpern, 1985 ). Federal laws have also paved the way for increased resources and regulations regarding transition programming for youth with autism. The 1990 reauthorization of IDEA with its mandate of individual transition plans for youth with disabilities beginning at age 16, was instrumental in prescribing specific elements that must be incorporated in an Individualized Education Program, including specific post-school outcomes and needed transition services. These targets are critical and serve to guide the programming and curriculum at the secondary level.

The early work of Kohler ( 1996 ) provided a general Taxonomy for Transition Programming that guided subsequent identification of educational transition practices for secondary students with autism by the National Technical Assistance Center on Transition (NTACT, 2020 ). Outcome data for young adults with autism and other developmental disabilities have indicated that more time spent in general education classrooms is associated with increased academic skills and knowledge, receipt of a high school diploma, and/or increased access to typical peers, which promotes social relationships and inclusion and ultimately more integration in the community (Landmark et al., 2010 ). Youth participation in both paid and unpaid work experiences during high school is also correlated with better outcomes in adulthood, including competitive or supported employment, number of hours worked, and hourly wage (Test et al., 2009 ). Family involvement in the educational and transition planning process is also critical, particularly given that family members are often the lifelong caregivers or support providers. One example of a research based program that establishes a collaborative planning process involving families and teachers in transition planning is the COMPASS model developed by Ruble et al. ( 2018 ). Although such planning and preparing for the post-school future is critical, many autistic students exit the school system with no support systems in place. Data published in the National Autism Indicators Report: Transition Into Young Adulthood indicates that 1 in 4 young adults with autism had no access to services since leaving high school (Roux et al., 2015 ).

Social skills and functional life skills, as well as vocational skills, are critical for supporting success in adulthood (Dell’Armo & Tasse, 2019). Intervention practices to address these skills have demonstrated efficacy for adolescents with autism. These include antecedent-based interventions, modeling, peer-based interventions, prompting, reinforcement, social skills training, task analysis, time delay, video modeling, and visual supports (Steinbrenner et al., 2020 ). However, comprehensive, empirically supported educational and employment programs for transition age youth with autism are limited. One exception is Project SEARCH. Project SEARCH is an intensive year long program for high-school students with disabilities that involves hands-on work experience along with skills training and placement assistance (Rutkowskia et al, 2006 ). The model integrates classroom instruction with on-the-job training and connects services and supports from educational and rehabilitation professionals to the employment setting. Wehman and colleagues (2020) have applied the Project SEARCH model with autistic adolescents and, in a series of studies culminating in a multisite randomized trial, have found consistently positive vocational outcomes and post-school vocational placements.

Self-Determination

For young adults with autism, self-determination is associated with positive post-school outcomes (Zalewska et al., 2016 ). Self-determination refers to the ability of, and opportunity for, students to make their own decisions and advocate for themselves (Shogren et al., 2015 ). Secondary students with ASD must be able to identify the types of supports and accommodations they need and must be able to articulate these needs to receive those services in college or on the job. However, due to the unique communication and social needs of students with ASD, specific educational and environmental components may be necessary to foster self-determined behavior (Wehmeyer et al., 2010 ). While no intervention approaches have included high school students with ASD exclusively, one evidence-based transition curriculum that has included a subpopulation of students with ASD and co-occurring intellectual disability is Self-Determined Learning Model of Instruction (SDLMI; Shogren et al., 2019 ). The SLDMI consists of three phases: (1) to define and set goals; (2) develop a self-management action plan and; (3) self-monitor and self-evaluation. SLDMI is associated with positive outcomes including increased self-determination, student-directed transition planning, increased access to the general curriculum, improved classroom behavior, and student attaining educationally relevant goals (Hagiwara et al., 2017 ).

Technology-Assisted Instruction and Interventions

Advances in technology are ubiquitous in nearly everyone’s life today, and in fact space constraints allow only a brief coverage of this rapidly expanding intervention area. For this paper, we define technology-assisted interventions as “an electronic item/equipment, application, or virtual network that is used to intentionally increase, maintain, and/or improve daily living, work/productivity, and recreation/leisure capabilities of adolescents with autism spectrum disorders” (Odom et al., 2015 , p. 3806). Forty years ago, the application of technology to instruction for individuals with disabilities was just emerging, with most of the applications bound to mainframe or then a new technology, desktop computers (Strain & Odom, 1985 ). Advances in smart-phones, tablets, telecommunication, virtual reality, artificial intelligence, and social media, all have had implications for use in education for students with autism. For example, tablets have been used as personal organizers that contain visual schedules, auditory prompts, and notetaking (Chelkowski et al., 2019 ). Smartphones and digital cameras also allow teachers to easily capture video examples of the skills that autistic children/youth learning and using those example as video-models (Dueñas et al., 2019 ). Technology has been used to deliver the content of instruction through traditional computer-assisted instruction ( LeBlanc et al., 2017 ), and tablets (Spooner et al., 2014 ). At this writing, we are in the midst of a pandemic and in-school instruction in many districts has halted. Teaching remotely through telecommunication and computer technology has become the modal form of instruction. Although not without its downsides (e.g., lack of access to the technology, knowledge of computer “etiquette”, absence of direct adult and peer mediation), there are empirical demonstrations of remote instruction for and learning by students with autism (Parsons et al., 2019 ). In addition, professional development of teacher and other service providers working with children/youth with autism has been delivered through didactic webinars, remote coaching, and self-paced instructional modules introducing EBPs (Sam et al., 2020 ).

Ineffective Interventions

For children and youth with autism, advocates and purveyors have proposed interventions and treatment that at the least are not effective and at the most are harmful. From the field of health, interventions such as hyperbaric chambers and chelation therapy have been proposed as “cutting edge” therapies (Siri & Lyons, 2014 ), despite their limited evidence of efficacy and possible harm. The field of education is no different, and at times practitioners adopt ineffective or even harmful practices. The most prevalent in education has been the use of facilitated communication (FC). Originally developed in Australia in the 1970s, FC became popular in the United States in the 1980s (Biklen & Schubert, 1991 ). In this technique a facilitator (adult teacher or parent) supports (physically) an autistic individuals’ arm or hand as they spell out words that communicate their thoughts. Over the last 25 years more than 19 rigorous experimental studies have demonstrated that the origin of the communication is the facilitator, not the person with a disability (Ganz et al., 2017), and it is primarily viewed as a discredited instructional method. However, adapted forms of the FC approach have emerged recently under titles such as rapid prompting method and supported typing (Pena, 2019 ), with rigorous systematic reviews again finding no evidence of effects (Schlosser et al., 2019 ).

Other ineffective intervention approaches for children and youth with ASD that appear in practice also have been largely discounted. For example, auditory integration therapy is a technique that could be provided by a trained audiologist as part of a related service but has been discredited by the American Academy of Pediatrics ( 2010 ). Children/youth with autism often experience sensory issues (e.g., loud noises are disturbing, touch is aversive). In schools often “sensory” interventions are provided. There is evidence that the Sensory Integration Therapy™ developed by Jean Ayres ( 2005 ) can be effective if provided by a trained therapist (Schaaf et al., 2014 ). Conversely, a variety of other “sensory” interventions such as weighted vests, sensory diets, or sensory rooms have little evidence of effectiveness (Case-Smith et al., 2015 ), although they are often used in school. One approach to reducing the number of ineffective, sometime fraudulent, interventions is to identify and broadly disseminate information about practices that are effective.

Evidence-Based Practices for Children and Youth with Autism

To counter the proliferation and use of ineffective and even harmful practices, there have been efforts to systematically identify intervention practices and programs that do have evidence of effectiveness. This evidence-based practice movement in education took the lead from the evidence-based medicine movement, originating with Cochrane ( 1972 ) and carried forward by Sackett et al. ( 1996 ), as well as several organizations that conduct and post systematic review of practices (e.g., Cochrane Collaboration, Campbell Collaboration, What Works Clearinghouse). Several research groups have conducted large scale, systematic reviews to identify studies that meet methodological standards and indicate positive effects on outcomes for autistic students. For example, the National Clearinghouse on Autism Evidence and Practice, reviewed the intervention literature from 1990 to 2017 and identified 28 EBPs for individuals with autism ages 0–21 (Hume et al., 2021 ; Steinbrenner et al., 2020 ). In an independent and parallel review, the National Standards Project reviewed the literature from 1957–2012, which identified 14 established practices for individuals under age 22 (NSP, National Autism Center, 2015 ). Comparison of an earlier review by NCAEP researchers (Wong et al., 2015 ) and the NSP review found substantial overlap between the two sets of practices ( https://autismpdc.fpg.unc.edu/sites/autismpdc.fpg.unc.edu/files/imce/documents/Matrix%20NPDC%20NSP%20v3.pdf ). For older youth with autism, the National Technical Assistance Center on Transition identified 24 EBPs related to transition outcomes for students across disability areas (NTACT, 2020 ). As the autism intervention literature continues to accelerate rapidly, the ongoing identification, dissemination, and most importantly, support for broad implementation of EBPs, will remain a critical need in the field.

Schools as Contexts for Implementing Interventions

The research-to-practice gap is a challenge for school-based programs, despite the evidence of practices that generate positive outcomes for autistic children and youth as described previously. In this section, we describe features of the school context that pose challenges for implementation of effective practices. A variety of approaches, which we call the iSciences, have become prominent as methods to address these barriers to implementation. These approaches will be identified and described.

Complexity of School Settings

Although the characteristics and settings for special education for children with autism have changed over the past 40 years, gaps between research and practice exists. Challenges to implementation of evidence-based practices relate to school structure, characteristics and preparation of personnel, and disparities in education settings and services.

Structure of Schools

Serving autistic students in school settings is a complex undertaking, as the population is notably heterogeneous, which requires individualized programming across a variety of settings and professionals. Selecting practices that are effective across context and feasible for implementation by general educators, special educators, paraprofessionals, and related service providers is difficult (Barry et al., 2020 ), as is coordinating opportunities for thoughtful collaboration and professional development for the team (Sinai-Gavrilov et al., 2019 ). The competing demands for school resources continue to mount, with increased pressure on schools to have students perform well on high stakes testing and meet rigorous academic requirements for graduation. This pressure limits autistic students’ access to specialized instruction related to social interaction and communication, transition preparedness, life skills, and coping skills (Snell-Rood et al., 2020 ). These structural factors may affect overall program quality for students with autism, which has proven to be low in schools across the country (Kraemer et al., 2020 ). High quality programs serve as a foundation for the implementation of EBPs, and thus poor program quality, as measured by school and classroom climate and instructional features, may itself serve as barrier to EBP implementation (Odom et al., 2018 ).

Effective education for all students with ASD requires knowledgeable and skilled school personnel. Survey results reveal that pre-service preparation programs may not sufficiently prepare teachers to use evidence-based practices (Morrier et al., 2011 ), or prepare principals to arrange effective inclusion experiences (Lyons, 2016 ). Even if program graduates are well prepared, students with autism will not benefit from their skills if educators leave the field. The U.S. Department of Education consistently identifies special education as an area of teacher shortage (Cross, 2017 ). In their review of the attrition and retention literature, Billingsley and Bettini ( 2019 ) found that special educators are more likely to leave as a result of factors such as demanding working conditions, and a lack of support from administrators, colleagues, and paraprofessionals.

Creating systematic professional development (PD) opportunities are likely to limit attrition, support school personnel that did not receive autism focused pre-service training and provide updated information on research based practices. An essential feature of an effective PD system is the use of competent coaches, identified in the implementation science literature as a critical driver for sustained change (Fixsen et al., 2009 ). Coaching has shown to be far more effective in changing teacher practices than traditional PD (e.g., workshop training alone). Paraprofessionals also are in need of PD, particularly in the use of evidence-based practices (Barrio & Hollingshead, 2017 ). Ideally the PD would provide opportunities for fostering interdisciplinary collaboration and the identified benefits for the students they serve (Biggs, 2016 ).

Disparities in Schools

Another challenge plaguing schools is the issue of disparity, which includes disparities at district, school, and child levels. At school and district levels, there are differences in resources such as funding and personnel (e.g., Mason-Williams, 2015 ), which may impact the capacity of schools to uptake and sustain evidence-based approaches for serving children with autism. At the child level, children from minoritized racial and ethnic groups, as well as children of parents with lower levels of education are less likely to receive related services or autism-specific therapies than their peers (Smith et al., 2020 ), and there are also diagnostic disparities (Maenner et al., 2020 ). Collectively, these disparities may be contributing to racial/ethnic and socioeconomic inequalities throughout the education experience for students with autism as well as during transition out of schools (Eilenberg et al.; 2019 ) and beyond.

Emergence of iSciences

To address the research to practice gap in educational programs for autistic children, and the barriers described previously, the iSciences have emerged. Although all the approaches we describe here do not all begin with the letter “I”, when employed in education they have in common the goal of moving evidence-based practices about effective instruction and intervention into use in educational programs for children and youth with autism. Space constraints prevent all but an acknowledgement of their foci. Information science is the “effective collection, storage, retrieval, and use of information (p. 2570, Saracevic, 2009 ) and has been an integral part of efforts to share information about evidence-based practices (Sam et al., 2020 ) and support data-based decision-making. Improvement science (Lewis,  2015 ) has emerged as an iterative process for developing and testing interventions in schools as well as improving the applications of interventions within specific school contexts. Similarly, Diffusion of Innovation theory (Rogers, 2003 ) attempts to explain how a new practice or idea spreads through social systems, and Dingfelder and Mandell ( 2011 ) have proposed that it may be an effective approach for promoting the use of effective practices. Dissemination theory , an offshoot of Diffusion Theory (Dearing, 2008 ), focuses more on societal “sectors” as social networks and implementation in complex organizations, which is also a feature of implementation science. Last, Implementation science , in its application for school-based programs, is the process for promoting the practitioner’s use of a program or intervention by addressing factors in the context (e.g., professional development, coaching) or in the system of influence operating outside of the immediate context (e.g., administrative leadership and support) (Odom et al., 2020 ). Although all of these iSciences hold promise in closing the research to practice gap, to date Implementation Science has been employed most often in educational programs for students with autism.

Our understanding of autism and how to best serve autistic students in school settings has changed considerably since the 1980s, a time period now described by autistic adults as “The Lost Generation,” due to their limited access to early diagnosis, intervention, and evidence-based practices (Lai & Baron-Cohen, 2015 ). Across the 40-year history, since the publication of DSM III, educational interventions and services for children and youth with autism have expanded greatly. The evolution of the DSM system, as well as reliable and valid diagnostic instruments (Lord et al., 2012) has created a more reliable process for identifying autism in educational systems (i.e., in the U.S. educational diagnoses are very similar to the DSM criteria). This, in turn, has led to greater awareness of the need for interventions and instruction that can be delivered in school contexts. In addition, as educational and behavioral theory expand and evolve, we see shifts in how and where students with autism are served, the immediate and post-school outcomes we value, and the methods we use to reach those outcomes. These changes contribute to the need for new knowledge, and thus our rapidly accelerating intervention literature base. The more recent advances in and adoption of strategies that support the use of EBPs in school systems increase the likelihood of closing the research to practice gap that continues to exist in education and uphold the promise of a free and appropriate education for students with autism.

In this commentary we will use the terms “autism” and “autism spectrum disorder (ASD)” synonymously as well as both person-first and identify-first descriptors.

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Odom, S.L., Hall, L.J., Morin, K.L. et al. Educational Interventions for Children and Youth with Autism: A 40-Year Perspective. J Autism Dev Disord 51 , 4354–4369 (2021). https://doi.org/10.1007/s10803-021-04990-1

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ORIGINAL RESEARCH article

Reading and writing skills in adolescents with autism spectrum disorder without intellectual disability.

• 1 Occupational Sciences, Speech Language Therapy, Developmental and Educational Psychology Department, Catholic University of Valencia, Campus Capacitas, Valencia, Spain
• 2 Developmental and Educational Psychology, University of Valencia, Valencia, Spain
• 3 Neuropediatrics Section, Hospital la Fe de Valencia, Valencia, Spain

The purpose of this study is to extend the knowledge about academic achievement in individuals with autism spectrum disorder (ASD). To this end, first, we analyzed differences in a wide range of reading and writing skills in adolescents with ASD without intellectual disability (ASD-WID) and adolescents with typical development (TD). Second, these two groups were compared on academic outcomes in core subjects and indicators of successful transition to secondary school. Third, the potential contribution of literacy skills to academic outcomes was examined in the two groups. Participants were 56 adolescents between 12 and 14 years old, 30 with ASD-WID and 26 with TD. Results showed no significant differences between the two groups on measures of reading fluency or literal and inferential comprehension. However, the performance of the group with ASD was significantly lower on reading comprehension processes that assess cognitive flexibility. Regarding their written expression skills, significant differences were observed between the group with ASD and the group with TD on most of the indicators analyzed as: productivity, lexical diversity, and overall coherence (resolution component). In addition, findings showed that the deficits in reading and writing observed in the adolescents with ASD significantly affected their academic achievement, which was lower than that of their peers with TD and below what would be expected based on their intellectual capacity. Moreover, their families’ perceptions of the transition to high school reflected worse adjustment and lower self-esteem, confidence, and motivation.

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by persistent difficulties in communication and social interactions, along with restricted interests and the presence of repetitive behaviors ( American Psychiatric Association, 2013 ). A key factor in the development of people with ASD is academic achievement, which undoubtedly contributes to access to employment opportunities and independent living. The inclusion of students with ASD in regular classrooms is a growing reality, and so it is necessary to analyze the factors that influence their educational performance.

Despite the relevance of this topic, research on the academic profile of students with ASD is limited, particularly in the adolescent stage or during the transition to secondary school. This is a complex period when important developmental changes occur, and it is characterized by greater academic and social demands. The inherent characteristics of ASD, such as difficulties in social communication, resistance to change, sensory hypersensitivity, or intolerance to uncertainty, make these students a particularly vulnerable population in this developmental period. In fact, anxiety, social pressure, and bullying have been found to be significant challenges for adolescents with ASD ( Nuske et al., 2018 ), who report negative experiences in this academic transition phase ( Makin et al., 2017 ). Therefore, identifying the variables that influence school performance and contribute to successful transition to secondary school should be a major research objective.

To date, studies that have attempted to analyze the academic performance of students with ASD have generally referred a variable performance, which is consistent with the disorder’s heterogeneity ( Keen et al., 2016 ). To account for this variability, studies have tried to establish different performance profiles in children and adolescents with diverse cognitive abilities. Thus, Wei et al. (2014) identified four distinct profiles based on five measures of academic achievement (word identification, rapid letter naming, passage comprehension, applied problems, and calculation). These profiles were the following: higher-achieving (39%, who have scored around the national average on most of the measures), hyperlexia (9%, who do well on decoding but with poor comprehension), hypercalculia (20%, with scores close to the national average on calculation skills, but significantly below average on the other four dimensions), and lower-achieving (32%, children who scored about two standard deviations below the mean on all five indicators). The higher-achieving and hyperlexia subgroups had significantly better functional cognitive skills and came from higher socioeconomic backgrounds.

Following a similar approach, Chen et al. (2019) , in a sample 7–14 years old participants with ASD with varied intelligence levels, could determine two distinct groups, low-achievement ASD and high-achievement ASD, based on their performance on four measures taken from the WIAT-II ( Weschler, 2001 ): numerical operations, mathematical reasoning, word reading, and reading comprehension. These differences were especially pronounced in the area of mathematics. As in the study by Wei et al. (2014) , the low-achievement subgroup scores were consistent with the intellectual capacity and other cognitive processes, such as working memory.

However, despite the expected relationship between cognitive ability and academic performance, other studies have identified discrepancies in this regard. Jones et al. (2009) found that approximately 70% of adolescents with ASD from 14 to 16 years old with different cognitive levels had a significant divergence between intellectual ability and one or more achievement domains. They described four subgroups in which either word reading (“reading peak” and “reading dip”) or arithmetic (“arithmetic peak” and “arithmetic dip”) was higher or lower than the WASI Full Scale Intelligence Quotient (IQ; Wechsler, 1999 ). Estes et al. (2011) identified these same differences in a sample of 30 children with ASD without intellectual disabilities. In 60% of them, a significantly lower achievement was found than what was predicted by their cognitive ability, in at least one of the domains analyzed (spelling, word reading, or basic number skills).

In conclusion, students with ASD present an irregular performance profile where intelligence plays an important role, although the research is not consistent in this regard. However, it is clear that many children and adolescents with ASD perform below what would be expected based on their intellectual capacity. Therefore, it is necessary to determine the areas of vulnerability and the factors involved in this low performance, in order to plan more appropriate and effective interventions. Certainly, in the school context, reading and writing are crucial instrumental skills and the basis for success in different curricular areas, and they have important implications throughout life, not only academically, but also socially and occupationally.

Reading Difficulties in ASD

Reading is a complex skill involving the orchestration of different components. From an overall perspective, two major processes may be distinguished as: decoding and comprehension. Decoding refers to the transformation of written words (graphemes) into phonological representations. Comprehension processes refer to the extraction of meaning from the written text. Specifically, and according to one of the most known models of reading, the Simple View of Reading Model ( Hoover and Gough, 1990 ), reading comprehension is the product of decoding skills and linguistic comprehension.

Many studies have found that people with ASD without intellectual disabilities (ASD-WID) have strengths in decoding skills, compared to their reading comprehension performance. Thus, in general, students with ASD-WID seem to master mechanisms involved in automatic word recognition, in contrast to their reading comprehension performance ( Jones et al., 2009 ; Norbury and Nation, 2011 ; Solari et al., 2017 ), which is below expectations for their chronological age or reading accuracy level ( Brown et al., 2013 ). To explain this discrepancy, good memory skills have been cited, as well as phonological and visual processing skills, which would contribute to adequate recognition of the written word.

As in the case of academic performance, the variability in reading skills has led studies to identify reading profiles in samples of children and adolescents with ASD. In a longitudinal and retrospective study, Åsberg et al. (2019) were able to determine three subgroups. A first subgroup, with “low reading performance,” which was the most frequent profile (approximately 50% of the participants), had below-average scores on both word reading and text comprehension. A second subgroup, made up of “skilled readers,” performed above average on both reading processes. Finally, the third subgroup was the least common (20%), and it was composed of “hyperlexical/low understanding” participants. Following a similar approach, namely latent profile analysis, McIntyre et al. (2017) found four different profiles in a sample of students with high-functioning autism from 8 to 16 years old: (1) readers with overall disturbance (32.2%), i.e., alterations in the decoding and comprehension processes; (2) readers with severe overall disturbance (14.1%); (3) readers with comprehension problems (20.6%); and (4) average readers (32.1%). In other words, approximately 70% of the participants experienced reading impairments, and of them, the majority had comprehension problems. Other studies using a cluster analysis methodology have also found lower reading comprehension scores than word reading scores, even in high-achieving subgroups of students with ASD ( Chen et al., 2019 ).

To determine the factors moderating reading comprehension performance in students with ASD, Brown et al. (2013) conducted a meta-analysis of 36 studies comparing ASD and control groups. The strongest individual predictors of reading comprehension were semantic knowledge and decoding skills. The study results highlight the contribution of oral language to reading comprehension, as well as the content of the texts, because individuals with ASD were significantly worse at comprehending highly social texts than less social texts.

In sum, decoding skills, language level, and text characteristics and content are variables to take into account when analyzing the reading comprehension difficulties of students with ASD. Other factors to consider are the development of comprehension strategies during reading ( Williamson et al., 2012 ) or the type of comprehension assessed (literal versus inferential) because students with ASD have shown greater difficulty with inferential comprehension processes ( Tirado and Saldaña, 2016 ). In addition to classical predictors, other cognitive factors may help us understand why students with ASD struggle with reading comprehension. Research in typical children has suggested that cognitive flexibility is positively associated with reading ( Yeniad et al., 2013 ). Cognitive flexibility requires the interaction of several mechanisms (attention shifting, conflict monitoring, and perception) that respond to specific environmental demands, such as rule changes, in order to achieve flexible behavior and to solve the problem in a new way ( Ionescu, 2012 ). Precisely, cognitive flexibility is one of the most significant affected executive function in the majority of children and adolescents with high-functioning ASD ( Lai et al., 2017 ). Therefore, it seems logical to expect that they have difficulties in deploying flexible strategies for accomplishing reading tasks.

Writing Difficulties in ASD

Similar to reading ability, good writing skills are crucial to academic and professional success. In addition, with the growing prevalence of online communication and social networks, the written expression has become a common means of daily interaction between people. Writing represents a major challenge for students with ASD. According to data provided by Mayes and Calhoun (2006) , -in a study with children and adolescents with heterogeneous IQ levels-, approximately 60% of students with ASD present some type of specific difficulty in learning to write.

Most of our understanding of the writing process has been based on the recursive and multi-layered model developed by Hayes and Flower (1980) and Hayes (2006) , which is composed of three main processes: (1) the planning process , directed to prepare the content of the text by retrieving ideas from memory and organizing them; (2) the translation process , which includes the grammatical and orthographical encoding, and the motor execution actions involved in handwriting; and (3) the revision process that allows writers to compare the written product with their mental representation of the intended text. Research on writing difficulties in ASD has mainly focused on the planning and translation processes. A meta-analysis found significantly worse performance of ASD students on several components of writing, related to the translation process (length, legibility, size, speed, and spelling) and to some indicators of the planning process, such as text structure ( Finnegan and Accardo, 2018 ). Likewise, a more recent study has demonstrated that children with ASD-WID write personal narrative texts that obtain lower ratings in holistic assessments of coherence, structure, and content, and have less lexical and syntactic complexity, in comparison with children with TD ( Hilvert et al., 2020 ). Moreover, fine motor and visuomotor speed problems ( Kushki et al., 2011 ) may often result in illegible or brief writing ( Fuentes et al., 2009 ).

Written expression difficulties of students with ASD have been found not only in narrative discourse, but also in expository and persuasive texts ( Brown et al., 2014 ; Price et al., 2020 ). In addition, their essays contain more grammatical errors and present less syntactic diversity and complexity, although they can achieve a lexical richness and coherence comparable to their peers with TD ( Hilvert et al., 2019 ).

In summary, variability is the trait that characterizes the academic performance and reading and writing abilities of students with ASD, which is linked to variables, such as intellectual ability, language level, the type of processes involved, and the characteristics of the tasks used to assess reading and writing. In any case, as students progress through the education system, there is a greater emphasis upon reading comprehension and writing expression which gives students access to school curriculum with more autonomy. The transition from primary to secondary school is one important and educational challenge. Research about the experience of young people with autism has identified a number of areas in which they may experience particular concerns compared to their TD peers, including structural/organizational and social demands. Secondary schools tend to be large, with different teachers for different subjects that students need to adapt to Maras and Aveling, (2006) . Furthermore, social complexity about forming relationships with a new peer group increases anxieties as well as academic demands of independence ( Tobin et al., 2012 ; Mandy et al., 2016 ). Our research focuses on the period of adolescence, a stage less studied in the literature, in particular, in the transition from primary to secondary school, an especially demanding challenge for individuals with ASD. Therefore, a measure of transition to secondary education of individuals with ASD without ID was included.

Consequently, the present study seeks to advance the knowledge about the reading and writing performance of students with ASD in several ways. First, there is a paucity of research on studying the relationships between reading and skills and school achievement in individuals with ASD. Second, it is carried out in Spanish, a language with a transparent spelling characterized by a series of phonological and orthographical specificities that can impact psycholinguistic processing. Third, different comprehension processes (literal and inferential) are considered, using, in addition, a reading-specific measure that requires cognitive flexibility. To the best of our knowledge, this measure has not been employed in the previous investigations assessing reading comprehension in ASD. Based on these considerations, the following objectives were addressed as follows:

1. to analyze differences in a wide range of reading and writing skills between adolescents with ASD-WID and adolescents with TD;

2. to analyze differences in academic outcomes in core subjects and on indicators of successful transition to secondary school between adolescents with ASD-WID and adolescents with TD; and

3. to explore the potential contribution of reading and writing skills to academic outcomes in both groups, adolescents with ASD-WID and TD.

According to the literature review, it is expected to find similar results in both groups in reading accuracy and fluency. However, significant lower results are hypothesized in participants with ASD-WID regarding indicators of written expression and reading comprehension tasks tapping inferential and cognitive flexibility processes. Likewise, it is predicted that participants with ASD will obtain lower academic outcomes, as well as worse results in indicators of successful transition to secondary education. Given the prominent role that reading and writing play on school outcomes, it is anticipated that both instrumental skills will have a considerable weight in academic performance, both in the group with TD and in the group with ASD-WID.

Materials and Methods

Participants.

The present study included 56 adolescents between 12 and 14 years old, of whom 30 were adolescents with ASD-WID (28 males) and 26 were adolescents with typical development (TD; 17 males). The participants had an intellectual functioning within the limits of normality on the K-BIT ( Kaufman and Kaufman, 2000 ).

The group of adolescents with ASD-WID had received a previous clinical diagnosis of an autism spectrum condition by the Psychiatry and Child Neurology services in hospitals and medical centers in the Valencian community at ages ranging between 2 years and 11 months and 6 years old. According to the protocol for the ASD diagnosis, the criteria for ASD from the Diagnostic and Statistical Manual of Mental Disorders fourth edition (DSM-IV; American Psychiatric Association, 1994 ), the Autism Diagnostic Interview-Revised (ADI-R; Rutter et al., 2006 ), and/or the Autism Diagnostic Observation Schedule-WPS (ADOS-WPS; Lord et al., 1999 ) were administered by a multidisciplinary team. In order to confirm the ASD diagnosis for the present study, the Social Communication Questionnaire ( Rutter et al., 2003 ) and the Autism Diagnostic Interview-Revised (ADI-R; Rutter et al., 2006 ) were administered, taking into account the recommended cutoff points. The results appear in Table 1 . These two instruments were administered to the parents by a clinical psychologist from the research team who had been accredited in their application. Likewise, all the adolescents met the strict diagnostic criteria for ASD from the fifth edition of the DSM-5 ( American Psychiatric Association, 2013 ), based on information provided by teachers and parents. Both informants, in interviews with a clinical psychologist, rated the severity of the criteria in the two ASD dimensions on scales ranging from 0 to 3 points (0 represents “almost never,” 1 represents “sometimes,” 2 represents “often,” and 3 represents “many times”).

Table 1 . Socio-demographic characteristics.

The majority of the adolescents with ASD had educational support at school. Specifically, seven adolescents with ASD (23.33%) were attending school in regular classrooms full time without educational support; nine adolescents (30.00%) attended regular classrooms but received educational support for their specific needs in the high school; and finally, 14 adolescents (46.66%) were placed in the communication and language classroom modality. Furthermore, 11 (36.66%) adolescents with ASD were taking antipsychotic medication (mostly risperidone) for behavioral problems.

The typically developing adolescents had no history of psychopathology or referral to pediatric mental health units (USMI), according to the information found in the school records, and they did not meet DSM-5 criteria for ASD on the screening carried out before beginning the evaluation. None of them were taking any psychoactive medication.

The exclusion criteria for the adolescents who participated in this study were evaluated through an extensive anamnesis carried out with the families. They included neurological or genetic diseases, brain lesions, sensory, auditory, or motor deficits, and an IQ below 80 (see Table 1 ).

The assessment measures were selected based on the objectives of this study. In addition, criteria, such as the psychometric properties of the measures, were taken into account, as well as their translation and adaptation to Spanish.

Reading Skills

The assessment of lexical and semantic reading processes was carried out through two tasks from the PROLEC-SE battery ( Evaluation of Reading Processes for Secondary Education Students ; Ramos and Cuetos, 1999 ). Furthermore, a subtest of the TLC Test ( Leer para Comprender; Reading for understanding ) was also administered ( Abusamra et al., 2010 ).

Lexical Processes Measures

Reading accuracy and reading fluency were assessed through the reading of 40 Spanish words that vary in length, frequency of use, and the complexity of their syllabic structure (i.e., high and low frequency, short and long words). The total accuracy score is obtained by adding up the words read correctly. To obtain the reading speed score, the time spent reading the complete list of 40 words is recorded. In our study reliability index of this measure, Cronbach’s alpha is 0.74.

Reading Comprehension Measures

Semantic processes were assessed using one of the tasks proposed in the semantic block of the PROLEC-SE battery. The task required silently reading two expository texts: “The Eskimos” and “The Australian Papuans.” After each text is read silently, the text is removed, and the participant has to answer 10 questions. Five questions are literal and can be answered from memory and five questions are inferential; that is, they can only be answered if the participant has understood the text and can make the appropriate inferences. Each correct answer receives 1 point. The total score is obtained by adding up the total number of correct answers on each text.

In this research, we use the direct scores. High direct scores on reading accuracy and comprehension and low scores on reading speed indicate better reading performance. The psychometric properties of the PROLEC-SE battery are adequate. For the reliability index, Cronbach’s alpha is 0.84 ( Ramos and Cuetos, 1999 ). In this study, α coefficients for the subscales used were 0.63 (literal comprehension), 0.68 (inferential comprehension), and 0.73 (total comprehension).

Moreover, to assess cognitive flexibility in the reading comprehension process, the “Mental flexibility” subtest from the Read to Understand Test (TLC) was administered ( Abusamra et al., 2010 ). In this subtest, instructions are given that involve different ways to approach the reading of a text, and, subsequently, the reader’s awareness of the strategies used is evaluated. Therefore, part of the evaluation is declarative because the student “tells what s/he does” to solve the task. This test assesses, for example, whether the student knows that, in some cases, a superficial understanding of the text is possible (specifically, on tasks, such as searching for five nouns in a paragraph), whereas in other cases, a deeper understanding is necessary. That is, it is not always necessary to pay attention to the meaning of words, sentences, and paragraphs in order to perform certain activities that focus exclusively on grammatical, syntactic, or stylistic aspects, or when searching for a specific piece of information. This test evaluates this type of metacognitive process, which is related to cognitive flexibility, that is, the ability to focus on the reading comprehension process by selecting appropriate strategies. This aspect of metacognition is defined as the ability to cope with a task by selecting the right strategies and modifying cognitive processes in response to changes: to shift attentional focus, select information to guide and choose necessary responses, form plans, and generate monitoring ( Abusamra et al., 2010 ). The test has psychometric properties, such as concurrent validity and internal consistency (Cronbach’s alpha of 0.79). α coefficient for this test in our sample is 0.66.

Written Expression

To obtain the spontaneous writing sample, the “Birthday” sheet from the Test of Written Language, fourth edition, was used (TOWL-4; Hammill and Larsen, 2009 ). The participants were given a blank sheet of paper and a pen and the following instruction: “Write a story about the events and activities shown in the picture.” They were given as much time as necessary to complete the written compositions, which were then transcribed using the Systematic Analysis of Language Transcripts (SALT; Miller and Iglesias, 2010 ). All the texts were coded on variables that assessed productivity, syntactic complexity, and overall coherence. An independent research assistant was trained in the measures coding during two sessions in a seminar of 5 h. In these sessions, the variables considered were defined and explained and the analysis was practiced on written samples. The research assistant was blind to the goal of the study and did not know the membership group of the texts (ASD or TD). For the reliability check, after the training sessions, the evaluators analyzed approximately 80% of the writings from each group (40 in all), which were randomly selected.

Productivity

Children’s productivity, or fluency, was measured as the total number of words in the text. Automated SALT analyses provided information about this variable.

Syntactic Complexity

Syntactic complexity was measured as the diversity of complex syntax ( Hilvert et al., 2019 ). This variable was determined by counting the number of different types of complex syntactic devices employed within the text: substantive subordinate clauses, adverbial subordinate clauses, relative subordinate clauses, and coordinated clauses. For the presence of each type of syntactic relationship, 1 point was awarded, with a maximum score of 4. In order to calculate inter-rater reliability, the formula proposed by Sackett (1978) was used (number of agreements divided by the number of agreements plus disagreements, x 100). The agreement was 90% for the substantive subordinate clauses, 100% for the adverbial subordinate clauses, 100% for the relative subordinate clauses, and 100% for the coordinated clauses. All disagreements were resolved by discussion.

Global Coherence

To assess the overall coherence of the compositions, the coding system proposed by Barnes and Baron-Cohen (2012) was followed. This system is specially addressed to capture how the story components are included. In this way, it can be identified if there is a cognitive style focused on details at the expense of globality, as the weak central coherence theory states. Thus, the texts were coded on a scale from 0 to 2 for each of the four different elements of the story: (1) setting (where the story takes place); (2) character (who the story is about); (3) conflict (what the story is about); and (4) resolution (how the story ends).

A score of 0 indicates that no information is provided about the element in question; a score of 1 indicates that the composition provides one or more details about the element, but the overall idea of the scene is not captured; and a score of 2 indicates that the narrative provides a well-founded and fully developed view of the corresponding element. With regard to the characters, a score of 0 is awarded if either of the story’s characters is not mentioned, and 1 point if the characters are mentioned, but without defining their relationship to each other or their role in the scene. For conflict, a score of 0 is assigned if the character’s desires or goals are not identified; a score of 1 if a character is defined as wanting something, but without mentioning an obstacle to that goal; and a score of 2 if both a goal and an obstacle to the character achieving that goal are established. Finally, in relation to the resolution component, 0 points are assigned when what happened at the end of the conflict is not mentioned; 1 point if an action that took place at the end of the scene is mentioned; and 2 points if an ending action is described and that action is linked to the overall theme of the scene.

According to the formula proposed by Sackett (1978) , the inter-rater reliability of these measures was as follows: in the case of the setting, 100% agreement was reached; for character, 100% agreement; for conflict, 97% agreement; and for resolution, 98% agreement. All disagreements were resolved by discussion.

Academic Results

Academic results were reported by parents and/or primary caregivers from the last math, language, and social science evaluation. The numerical range used in the Spanish educational system is from 0 to 10, where 0 is the minimum academic grade and 10 is the maximum.

Transition to Secondary Education

Parents filled out a questionnaire derived from a large scale, national transitions study, the Effective Preschool, Primary, and Secondary Education (EPPSE) transitions substudy ( Evangelou et al., 2008 ), used in Makin et al. (2017) to provide an index of “transition success.” Evangelou et al. (2008) defined “successful transition” as a multidimensional construct composed of five underlying factors: developing friendships and confidence, settling into school life, showing a growing interest in school and work, getting used to new routines, and experiencing curriculum continuity.

Parents had to answer six questions related to three of the five factors. Regarding the “developing friendships and confidence” dimension, parents were asked whether, compared to the last year in primary school, their child has more (3 points), the same number (2 points), or fewer (1 point) school friends, as well as more, the same, or less self-esteem, confidence, and motivation. The same scoring system was used in the “experiencing curriculum continuity” dimension, which was assessed by asking parents whether, compared to the last year in primary school, their child shows more, the same, or less interest in school and schoolwork. Regarding the adaptation to school life, parents were asked how they thought their child had settled in (very well, 4 points; quite well, 3 points; not very well, 2 points; and not well at all, 1 point). They were also asked how satisfied they were with the whole process of their child’s transition to secondary school (from very satisfied, 4 points and to not at all satisfied, 1 point), how they felt when their child first moved on to secondary school, and how they feel now (from not at all concerned, 4 points and to very concerned, 1 point). The index of internal consistency Cronbach’s alpha for this questionnaire in our sample is 0.91.

This research was performed in accordance with the ethical standards of the Research Ethics Committee of the University of Valencia, which is regulated by the Ethical Principles for Medical Research Involving Human Subjects (Declaration of Helsinki 1964; World Medical Association General Assembly, 2013 ). Likewise, the authors received authorization from the Board of Education of the Valencian Government to access the schools and locate the participants.

The evaluation was carried out in the high schools where the adolescents were enrolled, in specially prepared spaces that met optimal conditions for psychoeducational assessment. The informed oral and written consent of the parents of all the participants was also obtained after informing them about the research proposal. The different measures were administered to all the adolescents individually by trained examiners. The parents (mostly mothers) provided information about the adolescent’s transition to secondary education, ASD symptoms, and socio-demographic data.

Data Analyses

This paper presents a descriptive cross-sectional study of comparison between a group of adolescents with ASD and a group of adolescents with typical development.

The statistical analyses were performed with the statistical program for the social sciences SPSS v 26.0 (SPSS). Preliminary analyses checked all data for multicollinearity and multivariate outliers. The asymmetry and kurtosis data indicate that most of the variables followed a normal distribution (all values between −1 and 1). Variables that did not show a normal distribution were transformed using square-root transformation (coherence setting and coherence character). To compare the reading/writing skill, academic results, and successful transition to secondary school of ASD-WID and TD, Multivariate analysis of covariance (MANCOVA) was used. The data set was examined for violations of essential assumptions associated with the application of MANCOVA. Pearson correlations between all dependent variables pairs and dependent variable-covariate pairs suggested statistically significant linear relationships.

Adolescents’ IQ, vocabulary, and parents’ educational level were included as covariates due to its potential effect on reading and writing abilities and academic outcomes in general. Likewise, the differences between math, language, and social sciences academic outcomes were explored, as well as the differences regarding the transition to secondary education in adolescents with TD and with ASD-WID. Both academic outcomes and parents perceptions about the successful adaptation to secondary education form part of the academic curriculum, which encompasses different interrelated dimensions.

For the ANCOVAs, Bonferroni correction was applied to establish the significance level. The proportion of total variance accounted for by the independent variables was calculated using partial eta squared (according to Cohen (1988) : eta squared, 0.06 = small; 0.06–0.14 = medium; and 0.14 = large). To compare academic results and successful transition to secondary school of ASD-WID and TD, t -student was used. Moreover, two partial correlations, controlling for parents’ educational level and adolescents’ IQ and vocabulary, were conducted to examine the relationships between reading and writing skills and academic outcomes in both groups. Finally, multiple linear regression analyses were conducted to test the effect of reading and writing skills on the transition to secondary school and academic outcomes in adolescents with ASD-WID.

Differences in Reading and Writing Skills Between Adolescents With ASD-WID and Adolescents With TD

The MANCOVA between the ASD-WID and TD groups with the different reading skill scores (accuracy, speed, reading comprehension, and reading comprehension related to mental flexibility), controlling for parents’ educational level, IQ, and vocabulary, was statistically significant [Wilks’ Lambda (Λ) = 0.70, F 6,46 = 3.21, p = 0.01, η p 2 = 0.30 ]. Likewise, to calculate the additional ANCOVAs, a significance level of p < 0.008 was established, after applying the Bonferroni correction, and the value of η p 2 was calculated to check the strength of the association. Specifically, statistically significant differences were found on the reading comprehension “Mental flexibility” subtest (F 1,51 = 14.6; p < 0.01; η p 2 = 0.22 ). In addition, scores for accuracy (word reading), speed, and reading comprehension did not reach the required level of statistical significance between the group with TD and the group with ASD-ID ( Table 2 ).

Table 2 . Means, standard deviations (SD) of reading and writing skills, and statistically significant differences between ASD and TD adolescents.

The MANCOVA between the ASD-WID and TD groups with the different writing skill scores (productivity, syntactic complexity, and coherence), controlling for parents’ educational level, IQ, and vocabulary, was statistically significant [Wilks’ Lambda (Λ) = 0.71, F 6,46 = 3.02, p = 0.014, η p 2 = 0.28 ]. Likewise, to calculate the additional ANCOVAs, a significance level of p < 0.008 was established, after applying the Bonferroni correction, and the value of η p 2 was calculated to check the strength of the association. Specifically, statistically significant differences were found in word productivity (F 1,51 = 7.78; p = 0.007; η p 2 = 0.23 ), Syntactic complexity (F 1,51 = 13.4; p = 0.001; η p 2 = 0.21 ), and Coherence (conflict resolution component; F 1,51 = 7.63; p = 0.007; η p 2 = 0.13 ; see Table 2 ).

Differences in Academic Outcomes and Transition to Secondary School Between Adolescents With ASD-WID and Adolescents With TD

The MANCOVA between the ASD-WID and TD groups with the different academic outcome scores (language, math, and social sciences) and the transition to the secondary stage was statistically significant [Wilks’ Lambda (Λ) = 0.71, F 6,46 = 3.02, p = 0.014, η p 2 = 0.28 ]. Statistically significant differences were found in language (F 1,51 = 7.78; p = 0.007; η p 2 = 0.23 ), mathematics (F 1,51 = 13.4; p = 0.001; η p 2 = 0.21 ), social sciences (F 1,51 = 7.63; p = 0.007; η p 2 = 0.13 ), and the index of successful transition to secondary education (F 1,51 = 7.63; p = 0.007; η p 2 = 0.13 ; see Table 3 ).

Table 3 . Means, standard deviations (SD) of academic results and successful transition to secondary, and statistically significant differences between ASD and TD adolescents.

Contribution of Reading and Writing Skills to the Academic Outcomes of Adolescents With ASD-ID and Adolescents With TD

Likewise, two partial correlations were performed, using the covariates of parents’ vocabulary, IQ, and educational level, to analyze the association between the reading and writing variables that showed significant differences between the ASD-WID and TD groups and the learning outcomes in the subjects of the Spanish language, mathematics, and social sciences in the ASD-WID and TD groups.

In the group of children with TD, significant positive correlations were observed between the reading comprehension score related to mental flexibility and the scores on language ( r = 0.45; p = 0.029), mathematics ( r = 0.56; p = 0.006), and social sciences ( r = 0.40; p = 0.050). Similarly, significant positive correlations were observed between the productivity subscale and the scores on language ( r = 0.51; p = 0.013) and mathematics ( r = 0.44; p = 0.035).

In the group of children with ASD-WID, significant positive correlations were observed between the reading comprehension score related to mental flexibility and the scores on language ( r = 0.37; p = 0.050) and mathematics ( r = 0.37; p = 0.050). Likewise, significant positive correlations were observed between the social sciences scores and productivity ( r = 0.46; p = 0.015), syntactic complexity ( r = 0.61; p < 0.001), and coherence ( r = 0.42; p = 0.029; see Table 4 ).

Table 4 . Partial correlations between reading/writing skill and academic outcomes.

Finally, multiple regression analyses were carried out in each group in order to evaluate the contribution of reading comprehension related to mental flexibility and writing skills of productivity, syntactic complexity, and coherence to academic outcomes in the core subjects of language, mathematics, and social sciences (see Table 5 ). The regressions carried out with the TD group indicated that the predictors that explained the highest percentage of variance in Spanish language were reading comprehension related to mental flexibility, productivity, and coherence, explaining 51% of the total variance. As for the mathematics outcomes, the results showed that reading comprehension related to mental flexibility and productivity were the significant individual predictors, together explaining 55% of the variance. In social sciences, there were no significant individual or collective predictors.

Table 5 . Multiple regression analysis of reading and writing skills that predict academic outcomes in TD and ASD groups.

The regressions performed with the ASD-WID group indicated that, on the one hand, reading comprehension related to mental flexibility was the single most significant predictor of language and mathematics outcomes, explaining 31 and 24% of the variance, respectively. On the other hand, the predictors that explained the highest percentage of variance in social sciences were syntactic complexity and coherence, explaining 57% of the total variance.

The purpose of this study was to extend the knowledge about academic achievement in adolescents with ASD by addressing various objectives. First, this study analyzed differences in reading and writing performance between adolescents with ASD-WID and adolescents with TD. In terms of reading, no significant differences were found between the two groups on measures of reading fluency (accuracy and speed), which is consistent with most of the research on the topic in languages with opaque orthographies, such as English ( Jones et al., 2009 ).

However, contrary to expectations, our study data failed to show significant differences between participants with ASD-WID and their peers with TD on either literal or inferential reading comprehension. These results contrast with what is commonly reported in the literature, which generally indicates lower reading comprehension competence in individuals with ASD (see meta-analysis by Brown et al., 2013 ). This discrepancy in the findings could be explained by different factors. Firstly, both groups were matched according to vocabulary knowledge which following the Simple View of Reading Model ( Hoover and Gough, 1990 ) is a fundamental factor for reading comprehension. Numerous investigations with children with ASD have exemplified the strong association between reading comprehension and language (see the meta-analysis by Brown et al., 2013 ), which emerges even as one of the strongest predictors of the reading comprehension abilities of these students ( Davidson et al., 2018 ). A second important factor is the type of texts employed in our study. We used two expository texts with little social content that do not require the student to display inferential skills related to Theory of Mind, which is clearly affected in ASD ( Bora and Pantelis, 2016 ). In other words, the reader would not have to apply skills that require taking the perspective of the characters, which, in contrast, would be necessary to understand narrative texts ( Dore et al., 2018 ). In fact, studies have shown that individuals with ASD are significantly worse at comprehending highly social texts than less social texts, such as those employed in this study ( Brown et al., 2013 ). Moreover, and in line with our results on inferential comprehension, experimental studies using eye-tracking techniques have shown that adolescents with ASD are capable of developing inferential comprehension skills that are activated automatically ( Saldaña and Frith, 2007 ; Micai et al., 2017 ), although they may have difficulties on tasks that require them to answer questions that rate this same process ( Tirado and Saldaña, 2016 ). Likewise, another explanation for our discordant results could be found in the composition of the sample, which might consist of students with ASD who have shown strengths in reading performance, both in decoding and comprehension. These profiles have been described in the literature as “skilled readers” ( Åsberg et al., 2019 ) or “average readers” ( McIntyre et al., 2017 ).

However, the results of our study allowed us to identify certain deficient reading comprehension processes in adolescents with ASD, specifically those that require the activation of cognitive flexibility skills and, in particular, metacognitive skills, such as explicitly describing the strategies used when summarizing, detecting the main idea, or giving a title to a text. Thus, significantly lower performance was observed on the reading-specific measure used in this study that requires cognitive flexibility. These results are congruent with the alterations in cognitive flexibility described in ASD. These disturbances have been considered one of its neuropsychological manifestations, although with mixed findings ( Leung and Zakzanis, 2014 ). These outcomes also coincide with the difficulties identified in students with ASD in adapting reading strategies to various reading materials and task demands ( Micai et al., 2019 ). A competent reader must be able to change strategies while reading a text and adapt them to the different objectives and/or requirements presented. Adequate mental flexibility ensures the reader’s active participation in the comprehension process, and its proper functioning facilitates independent learning, which has a great impact on academic performance. Thus, we can see the importance of mastering these processes involved in comprehension and the need to consider this specific area when designing reading intervention programs for individuals with ASD.

In terms of writing skills, as it was hypothesized, the data revealed significant differences between the group with ASD-WID and the group with TD on all the indicators analyzed as: productivity, syntactic diversity, and overall coherence (in the latter case, only in the resolution component). Adolescents with ASD wrote shorter texts with less varied syntactic structures, which is consistent with the results of the previous studies and reviews on the topic ( Dockrell et al., 2014 ; Finnegan and Accardo, 2018 ; Hilvert et al., 2019 ). Unexpectedly, both groups performed similarly on most of the variables used to assess overall coherence (setting, character, and conflict). However, significant differences could be identified in the resolution component; that is, the students with ASD failed to mention what happened at the end of the conflict presented in their stories. These difficulties may affect the overall coherence of the written composition, which is consistent with the tenets of the Weak Central Coherence Theory ( Happé and Frith, 2006 ). According to this theory, people with ASD tend to focus on local or marginal aspects of the information and fail to integrate them into meaningful global representations, in this case, by providing an ending related to the conflict narrated. This cognitive style has also been shown in different studies on written expression in ASD, both in children and adolescents ( Brown et al., 2014 ), as well as in the adult population ( Barnes and Baron-Cohen, 2012 ).

The second objective of this study was to analyze the differences in academic outcomes and the transition to secondary school between adolescents with ASD-WID and adolescents with TD. As it was expected, the results showed statistically significant differences in the academic grades reported by parents and teachers in the language arts, mathematics, and social science subjects, and in the families’ perceptions of the transition to high school. These findings reinforce the idea of a significant gap between cognitive ability and school performance, taking into account that the participants in our study did not present intellectual limitations. This means that students with ASD are not displaying their full academic potential, which is being undermined by various factors, including deficits in certain reading comprehension and written performance measures, as discussed below.

Furthermore, according to parents’ perceptions, a less successful transition process to high school and generally worse adaptation were observed in adolescents with ASD compared to their peers with TD. Families report fewer friends and lower self-esteem, confidence, and motivation. They are less satisfied with the transition process and are concerned about it. These results are consistent with the negative experiences described by parents of children with ASD in this period of educational change, referring to social isolation, bullying, and anxiety in their children ( Humphrey and Lewis, 2008 ). Families experience challenges and stress beyond what would typically be expected ( Dillon and Underwood, 2012 ; Mandy et al., 2016 ; Peters and Brooks, 2016 ). Therefore, as parents also point out, it is essential for secondary schools to understand the nature of autism and the impact it can have on the child and implement the assistance or support students need for a successful transition, optimal academic performance, and social adjustment ( Cremin et al., 2017 ; Tso and Strnadová, 2017 ).

Finally, the third objective of this study was to examine the contribution of reading and writing skills to the academic outcomes of adolescents with ASD-WID. As expected, a significant positive relationship was found (in both the ASD-WID and the TD groups) between the two variables being analyzed. Specifically, in the group with ASD-WID, significant positive associations were observed between the reading comprehension measure specifically tapping cognitive flexibility and the grades earned in the language and mathematics subjects. A similar relationship was found between the grades obtained in social sciences and the written expression indicators considered (productivity, syntactic diversity, and coherence). This association highlights the importance of instrumental skills, such as reading and writing, which have a clear influence on school performance. Specifically, on the one hand, our study data indicate that the reading comprehension task involving cognitive flexibility turned out to be the only significant predictor of the grades obtained in language and mathematics. On the other hand, the predictors that explained the highest percentage of social sciences grades were syntactic complexity and coherence.

The difficulties of these students exhibit in certain processes of reading comprehension and written expression have an impact on their academic outcomes, which should lead to designing interventions that fit their profile of strengths and weaknesses. Several research syntheses have supported the use of strategy instruction in the form of question generation, use of graphic organizers, or making predictions ( El Zein et al., 2014 ; Finnegan and Mazin, 2016 ). More recently, Singh et al. (2020) , in a systematic review of case studies, analyzed the effectiveness of a series of instructional procedures that contributed to improving the reading comprehension performance of students with ASD. They highlighted the use of comprehension-enhancing supports in the form of graphic organizers or visual diagrams, metacognitive strategies, collaborative strategies, such as peer tutoring, and computer-assisted instruction. In terms of writing skills, a recent research synthesis carried out by Accardo et al. (2020) identified several effective instructional practices: self-regulated strategy development, sentence frames, video modeling, Handwriting Without Tears®, and analytic task instruction with systematic prompting and graphic organizers. Some of the variables that improved with the application of these techniques were the number of elements in the text structure and the number of words and sentences. It should be noted that, as in the reading comprehension intervention, the studies reviewed were single case studies, and so research using experimental or quasi-experimental group designs is necessary in order to improve the levels of scientific evidence currently available. Apart from these teaching strategies, education professionals may also consider to adjust the assessment criteria or the mode of assessment for adolescents with ASD.

Likewise, parents’ perspectives on the transition process to secondary school suggest the need for tailored assistance at the time of the student’s move to secondary school. In this regard, Peters and Brooks (2016) show that parents describe a more positive transition when both pre-transition support and ongoing support in the learning and social environments of secondary school are implemented. To this end, a better understanding of the difficulties and strengths of students with ASD in this educational stage, their particular style of processing information, and their strengths and weaknesses in reading and writing skills are essential, due to their strong impact on academic performance.

Limitations

Despite the contributions of these findings, our research has several limitations. First, the relatively small sample size may be hiding some possible significant relationships between the study variables and limiting the possibility to detect small effects. One second limitation, which leads the results to be interpreted with caution, is related to the moderate values of reliability coefficients of the administrated tests. Therefore, future studies should increase the number of participants on a randomized sampling basis and include, apart from psychometric tests, other reading comprehension tasks. The information from criterion-referenced measures could help to design more accurate intervention programs for students with ASD-WID. Third, the mid-range cognitive ability and the gender of the participants with ASD, mostly male, are factors that should be considered, as they may influence the results and affect their generalization to girls or to individuals with ASD with other cognitive levels. In addition, the writing skills of adolescents with ASD were only assessed on a narrative text, and it would have been appropriate to expand the information to persuasive and expository genres. Furthermore, the indicator used to reflect the academic results was the qualification marks of the last evaluation, which may not be representative of the whole academic level of achievement. Finally, our study has a cross-sectional design, and future research should analyze developmental variations in the writing and reading profiles of individuals with ASD.

This research provides an overview of the school performance of adolescents with ASD and the factors involved in it. The results show that adolescents with ASD have strengths in reading-decoding mechanisms, but their performance on reading comprehension processes involving aspects of mental flexibility and writing skills continues to be significantly below expectations. Both deficits contribute significantly to their academic achievement, which is also below that of their peers with TD and what would be expected based on their intellectual capacity, at a medium range in this study. In any case, academic difficulties should be taken into account when analyzing the parents’ opinions in the transition period to secondary school because parents of students with ASD-WID report a more difficult adaptation process compared to students with TD. Consequently, education professionals face the challenge of adapting their teaching style and employing evidence-based teaching strategies that address students’ different needs while enhancing their capabilities. This may be a promising avenue for reducing the gap between the potential and current academic performance of students with ASD.

Data Availability Statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Ethics Statement

The studies involving human participants were reviewed and approved by the University of Valencia. Written informed consent to participate in this study was provided by the participants’ legal guardian/next of kin.

Author Contributions

IB, AM, BR, and CB contributed to the design of the work and wrote the manuscript. CB was responsible for the analysis and interpretation of data for the study. BR was responsible for the literature search and assessment of the participants. All authors participated in data interpretation and draft the manuscript and approved the version to be submitted.

This research was financed by the Spanish Ministry of Economy and Competitiveness (PSI2016-78109; AEI/FEDER, UE) and by the Generalitat Valenciana (grant no. GV/2020/C/005). The funding body had no role in the study design, data collection, analysis, interpretation, or writing of the report or the decision to submit the paper for publication.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Acknowledgments

We would like to thank the adolescents, parents, and teachers who participated in this study.

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Keywords: autism, reading, writing, academic achievement, secondary school

Citation: Baixauli I, Rosello B, Berenguer C, Téllez de Meneses M and Miranda A (2021) Reading and Writing Skills in Adolescents With Autism Spectrum Disorder Without Intellectual Disability. Front. Psychol . 12:646849. doi: 10.3389/fpsyg.2021.646849

Received: 28 December 2020; Accepted: 07 June 2021; Published: 19 July 2021.

Reviewed by:

Copyright © 2021 Baixauli, Rosello, Berenguer, Téllez de Meneses and Miranda. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Belen Rosello, [email protected]

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

The Pervasive Loneliness of Autism

L oneliness has long been a pervasive issue within the disability community, growing even more pronounced as individuals age. Research indicates that, in particular, autistic adults grapple with markedly  higher levels of loneliness  compared to their non-autistic counterparts. Ironically, relentlessly pursuing a disabled person’s greatest sign of “success”—independence—might be the very thing that’s setting many autistics on a path towards profound loneliness and fragmented relationships.

The pursuit of self-sufficiency and the coveted ideal of “independence” are deeply American. But, even if inadvertently, it’s fueling disabled individuals’ loneliness. In her book, " The Beasts of Burden: Animal and Disability Liberation ," disability studies scholar Sunaura Taylor highlights the societal fallouts faced by disabled individuals who do not achieve this ideal of independence. Such societal consequences include economic disenfranchisement and social marginalization. But what is not being talked about is that those people who do achieve that type of independence face real costs, too.

Being the optimal version of an “an adult in America” is to move out, live on your own, and build your own family. Within the diverse and vast spectrum of autism, there are undoubtedly autistics who go on to experience fulfilling relationships and establish families of their own in adulthood. That said, for a good number of other autistics, especially those significantly impacted by social interaction skills, as well as sensory and behavioral challenges, their biological families are likely the only real family they will ever have. But there is a sense of societal disapproval attached to living with your biological family in the U.S. in older age, even if this is a common practice in other cultures. In turn, the societal ideal of “independent living” for people with autism translates to living apart from their family and being surrounded instead by a series of paid support staff, who will go home to their own respective families at the end of each work shift.

The high turnover in the lower-paid and high-stress disability support profession results in fleeting connections, leading to a lack of continuity needed to form lasting relationships for people with autism. Even the most wonderful of support staff will last a few years at best, before they completely disappear from life.

I’ve seen this personally: As someone who has autism, I’ve experienced a revolving door of over a 100 support staff—and I plan on living for many more years. The reality is that any person with autism is a client, a case, a job to the people they tend to interact with most—and that’s not the same as family or friends. A higher staff turnover is especially ubiquitous for autistics who are considered “challenging cases,” as staff naturally look to move to a higher paying job or an “easier case,” as soon as they can. Consequently, as autistics age, their world can become increasingly lonely, leaving them even more vulnerable on multiple fronts.

In his book, " Together: The Healing Power of Connection in a Sometimes Lonely World, " U.S. Surgeon General Dr. Vivek Murthy eloquently captures the essence of loneliness—the absence of closeness, trust, and genuine affection from friends, loved ones, or community. It is the overwhelming sensation of being "cut off from the people with whom you belong—even if you’re surrounded by other people." Murthy also points out the irony in the way that there is an aggressive rush to mitigate and investigate the origins of physical pain even as the emotional pain of loneliness, loss, and disappointment is seen as less consequential; even though overlapping regions in the brain are implicated for both physical and emotional pain.  

Autistic individuals face a unique challenge in building trust without the enduring connections to accompany it. It is a misnomer to think that the more significantly impacted autistics do not want social connection just because they don’t or can’t verbally communicate their needs. For instance, taking breaks from overwhelming sensory moments should not be conflated with a lack of desire for enduring human connection. As a result, our mental health needs are also often lost in the melee of other more visible behavioral and any health-related challenges that are seen as more pressing. The resultant isolation and loneliness increases the mental health toll, which may manifest as neuropsychiatric behavioral exacerbations, depression, or even apathy.

All humans, disabled or not, yearn for human connections that enrich their lives beyond a mere fulfillment of basic needs. The push towards independence in disabled communities, although well-intentioned, might inadvertently deprive autistics of these essential human connections, in an otherwise hyper-connected world. 

To be sure, the goal of independence is to empower disabled people to build resilience, develop crucial life skills, and gain a sense of self-worth. In fact, encouraging autonomy fosters confidence and self-assurance, enabling autistics to navigate social situations more effectively. 

But it’s also essential to recognize that advocating for meaningful connections and a more balanced approach to independence does not diminish the importance of autonomy. Striking a balance between independence and support is crucial for the well-being of autistic individuals. 

Addressing the loneliness epidemic in the disabled community necessitates a nuanced understanding of independence because in actuality, all humans live in a cycle of dependency. The perceived division between independence and dependence is a flawed notion. Embracing this truth could pave the way for a more inclusive society that transcends the limitations of societal norms and helps us build better support systems that result in enduring human social connections for people with autism.

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Improving the Written Expression of Children with ASD

• By: Kristie Asaro-Saddler, PhD University at Albany
• January 1st, 2013
• children , students , writing
• 13353    1

Writing has become an increasingly important element across curricular areas. However, many young children, including children with autism spectrum disorders (ASD), struggle with this key literacy skill. While it has […]

Writing has become an increasingly important element across curricular areas. However, many young children, including children with autism spectrum disorders (ASD), struggle with this key literacy skill. While it has been well-documented that many children with ASD have handwriting deficits, difficulties in the writing process, including planning, content generation, and revising text, are also pervasive. Therefore, it is essential to examine the writing of children with ASD, determine how their characteristics impact their writing ability, and discuss how parents and teachers may foster improvement in writing outcomes.

Writing is a foundational skill that can support and extend student learning across the curriculum. It allows the sharing of opinions, the demonstration of critical thinking skills, and the display of content knowledge. Writing is critical for school success, as it is the primary means by which students demonstrate their knowledge in school, and the major instrument that teachers use to evaluate academic performance (Graham & Harris, 2005). Beyond school, students need to be able to write well to succeed in society and to obtain and maintain employment.

Writing presents a unique challenge, as it requires putting thoughts on paper in such a way as to transmit a message to another person who may not have knowledge of what you are writing. While developing these thoughts, writers must coordinate the processes of planning, text production, and revision, while also self-monitoring their work. In addition, they must consider the conventions of the language, and the constraints of the topic and the genre, along with the audience needs and perspectives.

  Why Writing is Difficult for Children with ASD

Deficits in writing have been well-documented in ASD research. In one study (Mayes & Calhoun, 2008), for example, 63% of students diagnosed with ASD also exhibited a writing disability. It can be difficult for these students to think of ideas, organize their writing, and physically write their ideas. So what is it that makes writing so difficult for children with ASD?

Children with ASD characteristically exhibit a range of impairments that make written expression difficult. Among these characteristics are:

• An inability to use imagination, engage in abstract thinking, consider perspectives of others, and imagine future events or possible scenarios (Harbinson & Alexander, 2009; Myles, 2005; Myles & Simpson, 2001). These characteristics can lead to a literal interpretation of a writing task and an inability to comprehend or use metaphors, idioms, or rhetorical questions, and may hinder the exploration of counter-arguments and various perspectives.
• Deficits in theory of mind, or the ability to take another’s perspective or believe that others think differently from you (McCoy, 2011), which makes it difficult for students with ASD to recognize that their work will be read by someone else with different views and opinions. This unawareness of an “absent audience” may result in writings that are not well-developed, or that lack elaboration.
• Weak central coherence, or a tendency to focus on small details, which can lead to an inability to understand context or see the “big picture,” causing difficulty with distinguishing important from unimportant details.
• Deficits in the areas of language and communication, which make compiling, expressing, and recording thoughts a challenge, resulting in a composition that lacks a clear, central focus, or that is poorly organized.
• Motor/coordination issues that can contribute to difficulty with handwriting and composing, resulting in brief writings that students are unwilling to revise or elaborate because it is physically “too difficult.”
• Deficits in several executive function components, including planning, cognitive flexibility, inhibition, and self-monitoring (Hill, 2004), which directly impact an individual’s ability to maintaining his/her focus on the process of developing a main idea and details to support the topic, and to encourage engagement and continuous motivation throughout the writing process.

How Can You Help?

  There are several steps that parents and teachers can take to help students with ASD improve their writing skills and allow them to be more successful in school and in their everyday functioning. Here are five simple tips that you can use to help increase the motivation and written performance of children with ASD:

Make the environment conducive to writing. The home or classroom environment can impact a child’s willingness to write. Be sure that the lighting and noise level are acceptable for your child, given his/her sensory needs. Surround the child in a print-rich environment by posting model letters, book reviews, and other types of writing around the home or classroom. Teachers and parents may also consider providing alternatives to the typical pencil and paper. Vary writing implements to include items such as markers, stamps, stickers and magnetic letters, and allow students to work in a comfortable setting for them, as long as it is appropriate for writing (i.e. has a flat surface).

Create an audience and purpose. Since deficits in theory of mind my impact children with ASD’s ability to write for an absent audience, it is helpful to create an audience for them. It is beneficial for students to know before beginning the writing process that there will be an authentic audience, besides just their parent or teacher, viewing their writing. Different genres of writing offer different options of potential audiences. For example, persuasive letters can be written to a principal, a parent, or the head of a company, whereas fictional stories can be written and shared with younger siblings or students in younger grades. Online blogs for people with ASD provide a natural context for writing, in addition to social and emotional support, and may be used by young adults with ASD and younger students who are supervised by parents or teachers.

Use interests and fascination . In school, students must eventually learn to write in response to a prompt their teacher gives them. However, in order to increase students’ motivation and fluency with writing, it may help to allow them to start writing about things in which they are interested. These are topics in which children usually have a desire to share information, along with a great deal of background knowledge. For example, a child with ASD who has an interest in digital cameras may write a “how-to” piece about how to take a picture with a digital camera, or a child with a fascination with trains may write a persuasive piece on why trains are a better method of transportation than cars.

Provide supports. Students with ASD may require various types of supports in the classroom or at home. Graphic organizers and semantic maps (visual tools designed to organize thoughts and represent relationships between them) may aid in the planning process (Sansoti, Powell-Smith & Cohan, 2010). Framed paragraphs, which are partially completed paragraphs with a number of blanks strategically placed for the student to fill in, may also be used to scaffold students’ writing (Kluth & Chandler-Olcott, 2008), along with word banks or drawings/pictures (Hillock, 2011) and story starters, which provide a statement to start the story, such as, “I went for a walk in the woods and I found…” that the student has to continue. Siblings or other students in the class can also act as a support for children with ASD through scribing (writing down what the student says aloud) or shared writing, where students take turns making a contribution to the written product. Peers can also help students with the revising process after their first drafts have been completed.

Use technology. Sometimes the physical act of writing makes it difficult for children with ASD to create written products. Allowing the students to use a keyboard or speech-to-text software may reduce the physical burden and allow students to express themselves in another way. Technology can also be used to help children organize their writing. Software programs such as Kidspiration® and Inspiration® and iPad apps such as Popplet™ for example, can be used in the planning stages to help students organize their thoughts before beginning to write.

While writing can be a challenge for many students with ASD, providing support may prove beneficial. The basic tips offered here can help increase students’ motivation to write, resulting in more frequent writing with less resistance, and ultimately, better written products.

Kristie Asaro-Saddler, PhD is Assistant Professor of Special Education at The University at Albany. For more information, please contact Dr. Asaro-Saddler at [email protected] or visit www.albany.edu/special_education .

Graham, S., & Harris, K. R. (2005). Writing better: Teaching writing processes and self-regulation to students with learning problems . Baltimore, MD: Brookes.

Harbinson, H., & Alexander, J. (2009). Asperger Syndrome and the English curriculum: Addressing the challenges. Support for Learning, 24 , 10-17.

Hill, E. L. (2004). Evaluating the theory of executive dysfunction in autism. Developmental Review, 24 , 189-233.

Hillock, J. (2011). Written expression: Why is it difficult and what can be done? In K. McCoy (Ed). Autism from the teacher’s perspective . Denver: Love Publishing Company.

Kluth, P., & Chandler-Olcott, K. (2008). A land we can share . Baltimore: Paul H. Brooks Publishing.

Mayes, S., & Calhoun, S. L. (2008). WISC-IV and WIAT-II profiles in children with high functioning autism. Journal of Autism and Developmental Disorders, 38 , 428–439.

McCoy, K. M. (2011). Autism from the teacher’s perspective: Strategies for classroom instruction. Denver: Love Publishing Co.

Myles, B. S. (2005). Children and youth with Asperger syndrome . Thousand Oaks, CA: Corwin Press.

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Sansoti, F., Powell-Smith, K., & Cohan, R. (2010). High-functioning Autism/Asperger syndrome in schools: Assessment and intervention . New York: Guilford Press

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IB students around the globe fear writing the Extended Essay, but it doesn't have to be a source of stress! In this article, I'll get you excited about writing your Extended Essay and provide you with the resources you need to get an A on it.

If you're reading this article, I'm going to assume you're an IB student getting ready to write your Extended Essay. If you're looking at this as a potential future IB student, I recommend reading our introductory IB articles first, including our guide to what the IB program is and our full coverage of the IB curriculum .

IB Extended Essay: Why Should You Trust My Advice?

I myself am a recipient of an IB Diploma, and I happened to receive an A on my IB Extended Essay. Don't believe me? The proof is in the IBO pudding:

If you're confused by what this report means, EE is short for Extended Essay , and English A1 is the subject that my Extended Essay topic coordinated with. In layman's terms, my IB Diploma was graded in May 2010, I wrote my Extended Essay in the English A1 category, and I received an A grade on it.

What Is the Extended Essay in the IB Diploma Programme?

The IB Extended Essay, or EE , is a mini-thesis you write under the supervision of an IB advisor (an IB teacher at your school), which counts toward your IB Diploma (learn more about the major IB Diploma requirements in our guide) . I will explain exactly how the EE affects your Diploma later in this article.

For the Extended Essay, you will choose a research question as a topic, conduct the research independently, then write an essay on your findings . The essay itself is a long one—although there's a cap of 4,000 words, most successful essays get very close to this limit.

Keep in mind that the IB requires this essay to be a "formal piece of academic writing," meaning you'll have to do outside research and cite additional sources.

The IB Extended Essay must include the following:

• A title page
• Contents page
• Introduction
• Body of the essay
• References and bibliography

Additionally, your research topic must fall into one of the six approved DP categories , or IB subject groups, which are as follows:

• Group 1: Studies in Language and Literature
• Group 2: Language Acquisition
• Group 3: Individuals and Societies
• Group 4: Sciences
• Group 5: Mathematics
• Group 6: The Arts

Once you figure out your category and have identified a potential research topic, it's time to pick your advisor, who is normally an IB teacher at your school (though you can also find one online ). This person will help direct your research, and they'll conduct the reflection sessions you'll have to do as part of your Extended Essay.

As of 2018, the IB requires a "reflection process" as part of your EE supervision process. To fulfill this requirement, you have to meet at least three times with your supervisor in what the IB calls "reflection sessions." These meetings are not only mandatory but are also part of the formal assessment of the EE and your research methods.

According to the IB, the purpose of these meetings is to "provide an opportunity for students to reflect on their engagement with the research process." Basically, these meetings give your supervisor the opportunity to offer feedback, push you to think differently, and encourage you to evaluate your research process.

The final reflection session is called the viva voce, and it's a short 10- to 15-minute interview between you and your advisor. This happens at the very end of the EE process, and it's designed to help your advisor write their report, which factors into your EE grade.

Here are the topics covered in your viva voce :

• A check on plagiarism and malpractice
• Your reflection on your project's successes and difficulties
• Your reflection on what you've learned during the EE process

Your completed Extended Essay, along with your supervisor's report, will then be sent to the IB to be graded. We'll cover the assessment criteria in just a moment.

We'll help you learn how to have those "lightbulb" moments...even on test day!  

What Should You Write About in Your IB Extended Essay?

You can technically write about anything, so long as it falls within one of the approved categories listed above.

It's best to choose a topic that matches one of the IB courses , (such as Theatre, Film, Spanish, French, Math, Biology, etc.), which shouldn't be difficult because there are so many class subjects.

Here is a range of sample topics with the attached extended essay:

• Biology: The Effect of Age and Gender on the Photoreceptor Cells in the Human Retina
• Chemistry: How Does Reflux Time Affect the Yield and Purity of Ethyl Aminobenzoate (Benzocaine), and How Effective is Recrystallisation as a Purification Technique for This Compound?
• English: An Exploration of Jane Austen's Use of the Outdoors in Emma
• Geography: The Effect of Location on the Educational Attainment of Indigenous Secondary Students in Queensland, Australia
• Math: Alhazen's Billiard Problem
• Visual Arts: Can Luc Tuymans Be Classified as a Political Painter?

You can see from how varied the topics are that you have a lot of freedom when it comes to picking a topic . So how do you pick when the options are limitless?

How to Write a Stellar IB Extended Essay: 6 Essential Tips

Below are six key tips to keep in mind as you work on your Extended Essay for the IB DP. Follow these and you're sure to get an A!

#1: Write About Something You Enjoy

You can't expect to write a compelling essay if you're not a fan of the topic on which you're writing. For example, I just love British theatre and ended up writing my Extended Essay on a revolution in post-WWII British theatre. (Yes, I'm definitely a #TheatreNerd.)

I really encourage anyone who pursues an IB Diploma to take the Extended Essay seriously. I was fortunate enough to receive a full-tuition merit scholarship to USC's School of Dramatic Arts program. In my interview for the scholarship, I spoke passionately about my Extended Essay; thus, I genuinely think my Extended Essay helped me get my scholarship.

But how do you find a topic you're passionate about? Start by thinking about which classes you enjoy the most and why . Do you like math classes because you like to solve problems? Or do you enjoy English because you like to analyze literary texts?

Keep in mind that there's no right or wrong answer when it comes to choosing your Extended Essay topic. You're not more likely to get high marks because you're writing about science, just like you're not doomed to failure because you've chosen to tackle the social sciences. The quality of what you produce—not the field you choose to research within—will determine your grade.

Once you've figured out your category, you should brainstorm more specific topics by putting pen to paper . What was your favorite chapter you learned in that class? Was it astrophysics or mechanics? What did you like about that specific chapter? Is there something you want to learn more about? I recommend spending a few hours on this type of brainstorming.

One last note: if you're truly stumped on what to research, pick a topic that will help you in your future major or career . That way you can use your Extended Essay as a talking point in your college essays (and it will prepare you for your studies to come too!).

#2: Select a Topic That Is Neither Too Broad nor Too Narrow

There's a fine line between broad and narrow. You need to write about something specific, but not so specific that you can't write 4,000 words on it.

You can't write about WWII because that would be a book's worth of material. You also don't want to write about what type of soup prisoners of war received behind enemy lines, because you probably won’t be able to come up with 4,000 words of material about it. However, you could possibly write about how the conditions in German POW camps—and the rations provided—were directly affected by the Nazis' successes and failures on the front, including the use of captured factories and prison labor in Eastern Europe to increase production. WWII military history might be a little overdone, but you get my point.

If you're really stuck trying to pinpoint a not-too-broad-or-too-narrow topic, I suggest trying to brainstorm a topic that uses a comparison. Once you begin looking through the list of sample essays below, you'll notice that many use comparisons to formulate their main arguments.

I also used a comparison in my EE, contrasting Harold Pinter's Party Time with John Osborne's Look Back in Anger in order to show a transition in British theatre. Topics with comparisons of two to three plays, books, and so on tend to be the sweet spot. You can analyze each item and then compare them with one another after doing some in-depth analysis of each individually. The ways these items compare and contrast will end up forming the thesis of your essay!

When choosing a comparative topic, the key is that the comparison should be significant. I compared two plays to illustrate the transition in British theatre, but you could compare the ways different regional dialects affect people's job prospects or how different temperatures may or may not affect the mating patterns of lightning bugs. The point here is that comparisons not only help you limit your topic, but they also help you build your argument.

Comparisons are not the only way to get a grade-A EE, though. If after brainstorming, you pick a non-comparison-based topic and are still unsure whether your topic is too broad or narrow, spend about 30 minutes doing some basic research and see how much material is out there.

If there are more than 1,000 books, articles, or documentaries out there on that exact topic, it may be too broad. But if there are only two books that have any connection to your topic, it may be too narrow. If you're still unsure, ask your advisor—it's what they're there for! Speaking of advisors...

Don't get stuck with a narrow topic!

#3: Choose an Advisor Who Is Familiar With Your Topic

If you're not certain of who you would like to be your advisor, create a list of your top three choices. Next, write down the pros and cons of each possibility (I know this sounds tedious, but it really helps!).

For example, Mr. Green is my favorite teacher and we get along really well, but he teaches English. For my EE, I want to conduct an experiment that compares the efficiency of American electric cars with foreign electric cars.

I had Ms. White a year ago. She teaches physics and enjoyed having me in her class. Unlike Mr. Green, Ms. White could help me design my experiment.

Based on my topic and what I need from my advisor, Ms. White would be a better fit for me than would Mr. Green (even though I like him a lot).

The moral of my story is this: do not just ask your favorite teacher to be your advisor . They might be a hindrance to you if they teach another subject. For example, I would not recommend asking your biology teacher to guide you in writing an English literature-based EE.

There can, of course, be exceptions to this rule. If you have a teacher who's passionate and knowledgeable about your topic (as my English teacher was about my theatre topic), you could ask that instructor. Consider all your options before you do this. There was no theatre teacher at my high school, so I couldn't find a theatre-specific advisor, but I chose the next best thing.

Before you approach a teacher to serve as your advisor, check with your high school to see what requirements they have for this process. Some IB high schools require your IB Extended Essay advisor to sign an Agreement Form , for instance.

Make sure that you ask your IB coordinator whether there is any required paperwork to fill out. If your school needs a specific form signed, bring it with you when you ask your teacher to be your EE advisor.

#4: Pick an Advisor Who Will Push You to Be Your Best

Some teachers might just take on students because they have to and aren't very passionate about reading drafts, only giving you minimal feedback. Choose a teacher who will take the time to read several drafts of your essay and give you extensive notes. I would not have gotten my A without being pushed to make my Extended Essay draft better.

Ask a teacher that you have experience with through class or an extracurricular activity. Do not ask a teacher that you have absolutely no connection to. If a teacher already knows you, that means they already know your strengths and weaknesses, so they know what to look for, where you need to improve, and how to encourage your best work.

Also, don't forget that your supervisor's assessment is part of your overall EE score . If you're meeting with someone who pushes you to do better—and you actually take their advice—they'll have more impressive things to say about you than a supervisor who doesn't know you well and isn't heavily involved in your research process.

Be aware that the IB only allows advisors to make suggestions and give constructive criticism. Your teacher cannot actually help you write your EE. The IB recommends that the supervisor spends approximately two to three hours in total with the candidate discussing the EE.

#5: Make Sure Your Essay Has a Clear Structure and Flow

The IB likes structure. Your EE needs a clear introduction (which should be one to two double-spaced pages), research question/focus (i.e., what you're investigating), a body, and a conclusion (about one double-spaced page). An essay with unclear organization will be graded poorly.

The body of your EE should make up the bulk of the essay. It should be about eight to 18 pages long (again, depending on your topic). Your body can be split into multiple parts. For example, if you were doing a comparison, you might have one third of your body as Novel A Analysis, another third as Novel B Analysis, and the final third as your comparison of Novels A and B.

If you're conducting an experiment or analyzing data, such as in this EE , your EE body should have a clear structure that aligns with the scientific method ; you should state the research question, discuss your method, present the data, analyze the data, explain any uncertainties, and draw a conclusion and/or evaluate the success of the experiment.

#6: Start Writing Sooner Rather Than Later!

You will not be able to crank out a 4,000-word essay in just a week and get an A on it. You'll be reading many, many articles (and, depending on your topic, possibly books and plays as well!). As such, it's imperative that you start your research as soon as possible.

Each school has a slightly different deadline for the Extended Essay. Some schools want them as soon as November of your senior year; others will take them as late as February. Your school will tell you what your deadline is. If they haven't mentioned it by February of your junior year, ask your IB coordinator about it.

Some high schools will provide you with a timeline of when you need to come up with a topic, when you need to meet with your advisor, and when certain drafts are due. Not all schools do this. Ask your IB coordinator if you are unsure whether you are on a specific timeline.

Below is my recommended EE timeline. While it's earlier than most schools, it'll save you a ton of heartache (trust me, I remember how hard this process was!):

• January/February of Junior Year: Come up with your final research topic (or at least your top three options).
• February of Junior Year: Approach a teacher about being your EE advisor. If they decline, keep asking others until you find one. See my notes above on how to pick an EE advisor.
• April/May of Junior Year: Submit an outline of your EE and a bibliography of potential research sources (I recommend at least seven to 10) to your EE advisor. Meet with your EE advisor to discuss your outline.
• Summer Between Junior and Senior Year: Complete your first full draft over the summer between your junior and senior year. I know, I know—no one wants to work during the summer, but trust me—this will save you so much stress come fall when you are busy with college applications and other internal assessments for your IB classes. You will want to have this first full draft done because you will want to complete a couple of draft cycles as you likely won't be able to get everything you want to say into 4,000 articulate words on the first attempt. Try to get this first draft into the best possible shape so you don't have to work on too many revisions during the school year on top of your homework, college applications, and extracurriculars.
• August/September of Senior Year: Turn in your first draft of your EE to your advisor and receive feedback. Work on incorporating their feedback into your essay. If they have a lot of suggestions for improvement, ask if they will read one more draft before the final draft.
• September/October of Senior Year: Submit the second draft of your EE to your advisor (if necessary) and look at their feedback. Work on creating the best possible final draft.
• November-February of Senior Year: Schedule your viva voce. Submit two copies of your final draft to your school to be sent off to the IB. You likely will not get your grade until after you graduate.

Remember that in the middle of these milestones, you'll need to schedule two other reflection sessions with your advisor . (Your teachers will actually take notes on these sessions on a form like this one , which then gets submitted to the IB.)

I recommend doing them when you get feedback on your drafts, but these meetings will ultimately be up to your supervisor. Just don't forget to do them!

The early bird DOES get the worm!

How Is the IB Extended Essay Graded?

Extended Essays are graded by examiners appointed by the IB on a scale of 0 to 34 . You'll be graded on five criteria, each with its own set of points. You can learn more about how EE scoring works by reading the IB guide to extended essays .

• Criterion A: Focus and Method (6 points maximum)
• Criterion B: Knowledge and Understanding (6 points maximum)
• Criterion C: Critical Thinking (12 points maximum)
• Criterion D: Presentation (4 points maximum)
• Criterion E: Engagement (6 points maximum)

How well you do on each of these criteria will determine the final letter grade you get for your EE. You must earn at least a D to be eligible to receive your IB Diploma.

Although each criterion has a point value, the IB explicitly states that graders are not converting point totals into grades; instead, they're using qualitative grade descriptors to determine the final grade of your Extended Essay . Grade descriptors are on pages 102-103 of this document .

Here's a rough estimate of how these different point values translate to letter grades based on previous scoring methods for the EE. This is just an estimate —you should read and understand the grade descriptors so you know exactly what the scorers are looking for.

Here is the breakdown of EE scores (from the May 2021 bulletin):

How Does the Extended Essay Grade Affect Your IB Diploma?

The Extended Essay grade is combined with your TOK (Theory of Knowledge) grade to determine how many points you get toward your IB Diploma.

To learn about Theory of Knowledge or how many points you need to receive an IB Diploma, read our complete guide to the IB program and our guide to the IB Diploma requirements .

This diagram shows how the two scores are combined to determine how many points you receive for your IB diploma (3 being the most, 0 being the least). In order to get your IB Diploma, you have to earn 24 points across both categories (the TOK and EE). The highest score anyone can earn is 45 points.

Let's say you get an A on your EE and a B on TOK. You will get 3 points toward your Diploma. As of 2014, a student who scores an E on either the extended essay or TOK essay will not be eligible to receive an IB Diploma .

Prior to the class of 2010, a Diploma candidate could receive a failing grade in either the Extended Essay or Theory of Knowledge and still be awarded a Diploma, but this is no longer true.

Figuring out how you're assessed can be a little tricky. Luckily, the IB breaks everything down here in this document . (The assessment information begins on page 219.)

40+ Sample Extended Essays for the IB Diploma Programme

In case you want a little more guidance on how to get an A on your EE, here are over 40 excellent (grade A) sample extended essays for your reading pleasure. Essays are grouped by IB subject.

• Business Management 1
• Chemistry 1
• Chemistry 2
• Chemistry 3
• Chemistry 4
• Chemistry 5
• Chemistry 6
• Chemistry 7
• Computer Science 1
• Economics 1
• Design Technology 1
• Design Technology 2
• Environmental Systems and Societies 1
• Geography 1
• Geography 2
• Geography 3
• Geography 4
• Geography 5
• Geography 6
• Literature and Performance 1
• Mathematics 1
• Mathematics 2
• Mathematics 3
• Mathematics 4
• Mathematics 5
• Philosophy 1
• Philosophy 2
• Philosophy 3
• Philosophy 4
• Philosophy 5
• Psychology 1
• Psychology 2
• Psychology 3
• Psychology 4
• Psychology 5
• Social and Cultural Anthropology 1
• Social and Cultural Anthropology 2
• Social and Cultural Anthropology 3
• Sports, Exercise and Health Science 1
• Sports, Exercise and Health Science 2
• Visual Arts 1
• Visual Arts 2
• Visual Arts 3
• Visual Arts 4
• Visual Arts 5
• World Religion 1
• World Religion 2
• World Religion 3

What's Next?

Trying to figure out what extracurriculars you should do? Learn more about participating in the Science Olympiad , starting a club , doing volunteer work , and joining Student Government .

Studying for the SAT? Check out our expert study guide to the SAT . Taking the SAT in a month or so? Learn how to cram effectively for this important test .

Not sure where you want to go to college? Read our guide to finding your target school . Also, determine your target SAT score or target ACT score .

As an SAT/ACT tutor, Dora has guided many students to test prep success. She loves watching students succeed and is committed to helping you get there. Dora received a full-tuition merit based scholarship to University of Southern California. She graduated magna cum laude and scored in the 99th percentile on the ACT. She is also passionate about acting, writing, and photography.

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The experiences of families raising autistic children: A phenomenological study

Farzad faraji-khiavi.

1 Social Determinants of Health Research Center, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

2 Department of Health Services Management, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

Mansour Zahiri

Elham amiri.

3 Department of Rehabilitation Management, Rehabilitation Faculty, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

Behnaz Dindamal

Narges pirani.

4 Department of Health Services Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran

BACKGROUND:

Conditions and needs of autistic children have impacts on both the children and the family members who have crucial roles in raising the child. The prevalence of autism is increasing, and this fact makes it necessary to focus more on experiences of parents who have children with autism spectrum disorder (ASD). Hence, this study aimed to reflect the experiences of parents who have autistic children.

MATERIALS AND METHODS:

The present study was a qualitative research with phenomenology approach which was conducted using content analysis approach. Participants were 14 parents with ASD children in Ahvaz, and they were included based on purposive sampling method. To gather the required data, semi-structured interviews were formed. Data analysis was performed by Colaizzi's seven-step method.

Fifty-four conceptual codes were extracted from interviews of ASD children parents. Parents of these children had two main experiences: first family related and second education and treatment problems. Family problems included three categories (financial, psychological, and family relationships). Education and treatment was categorized into three (schooling, transporting, and quality in facilities).

CONCLUSIONS:

Problems mentioned by parents of autistic children highlight the need for providing training and counseling services as well as emotional supports from both society and government. Planning and implementing supportive plans empower parents to strategically face problems and eventually improve their life quality and mutual understanding.

Introduction

Autism spectrum disorders (ASDs) are a group of pervasive developmental disabilities known as the most prevalent, serious, and yet unknown disorders during childhood.[ 1 , 2 ] Children with ASD are identified by a range of problems in their emotional, physical, and interactional skills, daily routines and playing, language development and natural speech, as well as imitative ability.[ 3 ] ASD symptoms typically are apparent within the 1 st year of age; however, certain clinical diagnosis does not happen before age three.[ 4 ] Although there is little information about the certain cause of ASD,[ 5 ] some studies have found that ASD etiology is not just characterized by a unique factor instead environmental and genetic risk factors, or a combination of both factors, play roles in ASD etiology, however, just recently it is agreed that ASD is mostly caused by genetic factors.[ 6 ]

In the last two decades, the prevalence of ASD has remarkably increased.[ 7 ] It is estimated that ASD prevalence in 2014 was 2.24% which showed three times more than 2000 estimation.[ 8 ] In Iran, ASD prevalence among 5-year olds is estimated at 6.26 in 10,000.[ 9 ]

ASD can be seen among all races, ethnics and across all socioeconomic groups. The prevalence of ASD among boys is four times higher than girls,[ 10 ] but in girls, ADS is more comorbid with some diseases like epilepsy.[ 11 ] Increasing prevalence of autism requires more focus on experiences of these children's parents.[ 12 ] Special needs and conditions of autistic children influence not only the child but also family members who play roles in child development.[ 13 ] Families with ASD children are facing a wide range of stressful and challenging conditions such as unexpected disabilities, child's harmful behaviors, and behavioral disorders, difficulty in getting services, dilemmas in finding an effective treatment, and finally, restricted and dull interaction with other members of the society.[ 14 ]

The most stressful factor that parents with autistic children have experienced is limited acceptance of autistic behavior by society members and failure to receive social support.[ 15 ] Lack of such supports increases parents' stress level.[ 16 ] A fairly large number of studies confirm that mothers of autistic children face more challenges than mothers of other children with special needs, and have lower cognitive well-being[ 17 , 18 ] as well as suffer from more stress.[ 19 ]

A child with ASD may lead to several negative effects; parents feeling guilty, mothers quitting jobs to take care of the child, a low marital life quality, parents' depression and isolation feelings due to lack of time to spend for their personal needs.[ 20 ] In addition, these disorders also insert financial burden on families to cure and rehabilitate children.[ 21 ] In Asian countries, the cost of treatment and care for such children is about 70% of an officeholder.[ 22 ] It is obvious, without instructing and supporting families, their resources (money, energy, time, and spirit) may decrease day by day.[ 14 ]

Based on what went on, identifying ASD parents' problems and needs is crucial due to the impacts of ASD on children and their families, increasing prevalence of the disease, and the fact that autism is a lifetime disorder. Furthermore, Khuzestan province and its capital city, Ahvaz, is one of the autism centers in Iran, yet no comprehensive study has been done on these issues. Therefore, this study was conducted for the first time in Khuzestan province, although it was previously conducted in some other provinces of Iran. Considering multicultural context of this province, high prevalence of ASD, and scattered ASD centers, this study aimed to reflect the Experiences of families with ASD children in Ahvaz.

Materials and Methods

This study was a qualitative research with phenomenology approach which was conducted using content analysis approach.

Participants

Participants were 14 parents with ASD children in Ahvaz. Participants were included based on purposive sampling method, and they were added until data saturation point was obtained. Inclusion criteria were: living autistic child with family, the ability to speak Persian, and consent to participate in the study. Exclusion criteria also included: The family has another autistic child and the child has another physical or mental illness.

Data collection

To gather the required data, semi-structured interviews were formed. Participants answered questions such as: “Do you have financial problems because of your child's illness?” “Do have affected care of your child on marital status?” or “Do you have depressing during in this time?”. The time and place of the interviews were confirmed by the participants; in average, each interview lasted for 90 min ranging 60–120 min regarding each participant's condition. They were informed about the aims of the study, and participants' consent forms were collected. All the interviews were recorded and completed during 3 months (September 22 to December 20, 2018).

Data analysis

All the interviews were transcribed by two of the researchers; the data were analyzed through seven-step Colaizzi's method. (1) Manuscripts of interviews were read several times by research team, (2) Significant statements which were directly related to research subjects were identified, (3) Relevant meanings were extracted and formulated from significant statements, (4) Identified meanings were clustered into categories and themes, (5) An exhaustive description was developed about experiences of families with autism children (6) Fundamental structure of the studied phenomenon was produced, and (7) Fundamental structure verification was sought through asking participants about final categorizations.[ 23 ]

In addition to check the trustworthiness of the data Lincoln and Guba's four-criteria (credibility, dependability, confirmability, and transferability) was used.[ 24 ] The validity of findings increased by means of Investigator Triangulation.

Ethical issues

When the study received ethics code (IR.AJUMS.REC.1397.591) from the Research Ethics Committee of Ahvaz Jundishapur University of Medical Sciences, the researchers were introduced to associated places (ASD care centers, clinics, and households of children with ASD). The participants were informed about the aims of the study and confidentiality of interviews.

The following sections present information related to participants' related demography as well as main themes and sub-themes.

Participants' demographic information

Participants' ages ranged from 20 to 40. They all had office jobs. Half of the parents had two or three kids. Most of them had average and above-average financial status.

In this study, six subthemes were extracted from two main themes based on parents views and included family problems (financial problems and resulting obstacles, parents' psychological and mental problems, marital problems and siblings' relationships), ASD children's education and treatment (problems related to autistic children's education, parents and children transportation problems, and clinic-related problems). Codes (conceptual units) related to each theme are presented in the following table.

Family problems

Totally, parents of children with ASDs mentioned 27 problems which were classified into three subthemes of financial problems and resulting obstacles, parents' psychological and mental problems, marital problems, and siblings' relationships [ Table 1 ].

Family problems in experienced life of Autism spectrum disorder children parents

ASD=Autism spectrum disorder

Most parents mentioned high treatment prices as the most serious problem. Sometimes treatment process was negatively influenced because they could not afford to pay it. Some complain of the costs and insurance policies: “Costs are absolutely pressing us, insurances just cover some parts of the treatment cost” (Participant 3). Other parent mentions a point: “The costs are too high. We have to cut off our other costs to pay for the treatment. We do not spend any more for ourselves; we cannot” (Participant 6)! Another parent limits services as much as possible: “To tell the truth, I cannot afford to send him to speech therapy class; I do the training at home” (Participant 2).

All participants had experienced stress and anxiety feelings. Some of them believed they cannot be happy anymore due to current concerns. Such depressions affected some parents so deeply that they could not pass denial phase. In addition, suicide intention was mentioned by some other interviewees. Some parent feels he even does not have time for himself: “Most of the time I feel depressed but I never had time to visit a psychologist” (Participant 3). Other one remembers: “It is difficult for his mother to accept her child's disease. When our son was two, she was under treatment for her depression” (Participant 7). One of interviewees basically denies problem in public while worries for his wife as well as himself: “I hate the name autism. Wherever I go they say it's autism. I say no. My child has delay in language. My wife is depressed. She says “I want to kill myself.” If I had not stopped her, she could have killed herself. One of my colleagues had a sick child. She went to a psychologist. She got pills. After a while her hands had tremors. I got scared. If I go to a psychologist, I will be affected to” (Participant 5).

Respondents believed child's disorders ended in emotional distance between parents and problems in marital life. Most mothers said they spend all their time and energy for their child with ASD and they have nothing more to spend for the typically growing child such as: “Most of my time is for this child (the autistic one), I have no time to play with the other one” (Participant 3). Some forget about their simple daily jobs: “Anyway, when I am doing my child's daily routines, I lose concentration. Well, for example, after a while you cannot iron your husband's clothes” (Participant 1), While they cannot take a break: “My husband says leave one of the children with me, and you and the other one go to your mom's home for a month, but I am scared to do it” (Participant 5).

Education and treatment problems

Twenty-seven problems were identified as education and treatment problems of children with ASD including problems related to autistic children's education, parents and children transportation problems, and clinic-related problems [ Table 2 ].

Education and treatment problems in experienced life of autism spectrum disorder children parents

As children with ASD have certain stereotypes, and their learning requires more time compared to typically developed children, parents reported problems related to ASD children's education. Although some parents mentioned the need of having a school for ASD children, some parents believed that such schools prevent children from learning social communication skills. A participant says: “I registered him in a private school. After 20 day teachers asked me to go to school. They said your son does not sit on his chair in the class and distracts other students. If he has problems take him to a psychologist” (Participant 5). Other parent recalls: “Once I took him to the kindergarten, the staff didn't let him in. They said your child has stereotypical behaviors. Other children may learn negative behaviors from him. In case of other families notice this, they will not bring their children to this kindergarten; as a result, we have to close the kindergarten” (Participant 3). A mother does not believe in special schools: “In an autism school, it is not possible for children to learn how to communicate with others because all of them are autistic children. Moreover, my child will learn other negative stereotypical behaviour like screaming” (Participant 1). Finally, we can hear from some other parent: “I do not allow my child go to a school where autistic children go. I will pay more money if I have to but I take him to an ordinary private school, because public schools do not register them at all” (Participant 7).

One of the problems that parents of children with ASD suffer from is transportation. Parents were dissatisfied with school buses which are over full. Some other mentioned restlessness and disquiet of the child in the buses as the other problem. A parent mentions: “My child does not sit in the bus. He is restless. Other mothers ask me: what is wrong with your kid? I don't send my child to school by bus because I have seen how drivers are treating children, it is very improper. In addition, kids are piled in the bus about twice of its capacity. All of these kids are aggressive; and I cannot send my child with them, no way. As a result, I have to get a taxi; and it is expensive” (Participant 3). A mother has a point: “As long as his speech has not improved I won't send him with strangers, because they may mistreat him or hurt him and he cannot tell me. There are things in Tehran (the capital city) that you cannot find here. There are special advantages in parking places for parents of ASDs children. I was fined several times because of parking place” (Participant 6).

Another point that parents mentioned was improper conditions of the clinics. Almost all participants were dissatisfied with quality of services in the clinics. Some complained trainers: “His tutors shout at him, this causes the child suffer from personality problems in the future. You have to search a lot to find a good-tempered tutor” (Participant 2). And others were expecting more from related facilities: “I am not satisfied with the facilities, neither private nor public facilities provide appropriate services. They don't have dark rooms. For such children they should have at least one dark room” (Participant 3), or: “It is very crowded here and children have behavioral problems. Once I suggested them to provide a playing room. So we can stay over there with our kids, when kids are restless. As a result, our children do not make noise and cause problems for other classes (and they did nothing)” (Participant 6). At last they try to compare it with other cities: “Compared to Tehran and other cities, Ahvaz facilities are in poor conditions. Hydrotherapy and play therapy places are very limited. The child's conditions do not improve in these contexts” (Participant 5).

The first problem that parents of ASD in this study suggested was financial problems. Studies have concluded expenses of families for children with ASD are up to three times more than typically developed kids as well as mentally and physically disabled children at the same age.[ 25 ] For participants, treatment costs and lack of insurance support were the biggest financial challenges. Sharp argues in his study that even if insurance companies cover medical tests related to diagnosis, they never pay for therapies for behaviors.[ 26 ]

It is suggested that financial supports from government and charities address such families, As Koohkan et al . found in a qualitative study, the role of various charities is very significant in access to financial support for families of sick children.[ 27 ]

In addition, providing a more comprehensive insurance coverage may reduce the total financial burdens of the families. Among all mental conditions that parents mentioned depression, anger, inability, suffer, and guilty feeling were the most repeated. The results of Poretemad et al . show that mothers with autistic children experience higher parental stress levels and this increases their anger.[ 28 ] As a response, it is suggested that autism schools and clinics may help families of children with ASD to face their conditions via setting training courses for decreasing psychological pressures, training effective confrontation, training life skills, and at the end managing anger as well as stress.[ 29 ] Dadipour et al . Also considered necessary the role of training courses and counseling for the mental health of families and their coping with the problems of the sick child.[ 30 ]

One of the results of the present study about the marital conditions of parents was couples' intention to divorce. Tensions of raising autistic children, and their behavior problems, increase the possibility of divorce.[ 31 ]

In line with the results of this study, Hartley et al . found that divorce rate among parents with autistic children is twice as much as it is for parents with normal children.[ 32 ] It seems provision of family consulting can help to restore and develop parents' relation.

Going to school can be considered as the beginning of a new kind of partnership between children with ASD and their parents to deal with special needs of family.[ 33 ] The results of the present study revealed lack of enough autism schools and low educational quality in these schools are pressing problems for training autistic kids. According to Balance et al ., parents with ASD children are always concerned about lack of necessary educational and health services in autistic schools.[ 34 ]

Another identified problem for parents in this study was using public transportation systems for autistic children and their presence in public. Although parents mostly pointed that conditions in other cities, namely Tehran, the capital, are better for children with ASD, the results of previous studies done in Tehran also suggested public transportation as one of the problems.[ 15 ]

It seems that allocating school buses and experienced drivers for transporting these children would be effective if required standards were considered, so that both parents and children benefit from relatively peaceful environment in vehicle as well as safety and security of the conditions. Parents questioned the poor quality of the services presented by the clinics. Ahmadi et al . in 2011 compared the needs of families with ASD children in Iran and Canada. Based on their study, there were three most common needs in special children's families: continuous services, professional expertise, and professional understanding.[ 35 ] These three and other needs in ASD remind us the crucial role of service quality in ASD children. It seems some comprehensive clinics need to be considered and established to provide a wide range of services for special children to meet their needs. Quality development programs may drive these facilities in delivering effective services along with other aspects of quality.

It is obvious that most of the identified problems and needs are not merely related to health field but address other sections; hence, health strategies do not solve the problem by itself. That is, problems, challenges, and meeting the identified needs and expectations of parents of children with ASD require multisector communications and cooperation.

Limitations of the study

Among the limitations of the present study was unwillingness of some families to mention their experience and problems. To encourage them to interview, the interviewers explained that their cooperation and participation may greatly help to identify their problems and try to solve them. In this way, they cooperated more consciously. Furthermore, this study was done in centers of Ahvaz; hence it needs to be cautious to generalize the results. Indeed, qualitative research may not be generalized. Similar research needs to be conducted in other provinces of Iran, then through a meta-analysis reveal the experience and general problems of these families for metropolitan and health policymakers.

Conclusions

Parents of ASD children had two main experiences: first family related and second education and treatment problems. Family problems included three categories (financial, psychological, and family relationships). Education and treatment was categorized into three (schooling, transporting, and quality in facilities). Health policymakers and other stakeholders need to support these families at least in three contact points: at home, school, and ASD facilities. Problems mentioned by parents of autistic children highlight the need for providing training and counseling services as well as emotional supports from both society and government. Planning and implementing supportive plans are necessary to empower parents to strategically face problems and eventually improve their life quality and mutual understanding. Considering the wide range needs of these families, it takes a multisector cooperation in order to provide them proper services and alleviate some of the burdens for families with ASD children.

Financial support and sponsorship

This study was financially supported by “Social Determinants of Health Research Center in Ahvaz Jundishapur University of Medical Sciences in Iran (Grant No.: SDH-9717).

Conflicts of interest

There are no conflicts of interest.

Acknowledgment

The research team appreciates managers of autism centers, instructors, and parents who helped to conduct this study. This study approved by Research Ethics Committee of Ahvaz Jundishapur University of Medical Sciences (Ethics Code: IR.AJUMS.REC.1397.591).

The Silent Warriors of WW1: Submarines in Maritime Warfare

This essay about WW1 submarines explores their pivotal role in maritime warfare. It highlights their technological advancements, such as diesel-electric propulsion and periscopes, which transformed them into stealthy predators of the deep. The essay also discusses the impact of German U-boats and unrestricted submarine warfare on naval tactics and international law. Despite being overshadowed by other aspects of the war, submarines left a lasting legacy, shaping the course of naval warfare and influencing subsequent conflicts through their contributions and challenges to established norms.

How it works

When discussing the annals of World War I, the focus often gravitates towards the thundering clashes of infantry on land or the aerial dogfights that defined the era. However, beneath the waves, a silent yet formidable force was at play – submarines. These underwater vessels, often overshadowed by their surface counterparts, played a pivotal role in shaping the course of the war at sea. In this narrative, we delve into the captivating world of WW1 submarines, exploring their technology, tactics, and lasting impact on naval warfare.

At the outset of World War I, submarines were still in their relative infancy. However, they quickly proved their worth as effective tools of naval warfare. German U-boats, in particular, emerged as a potent threat to Allied shipping lanes, employing daring tactics such as unrestricted submarine warfare. This strategy aimed to starve Britain of vital supplies by sinking merchant vessels without warning, regardless of their neutral status. The devastating effect of these attacks, coupled with the sinking of passenger liners such as the Lusitania, fueled international outrage and significantly escalated the conflict.

One of the defining technological advancements of WW1 submarines was the introduction of diesel-electric propulsion systems. Unlike earlier models reliant on gasoline engines, diesel-electric submarines could operate submerged for extended periods, drastically enhancing their stealth and endurance. Additionally, innovations such as periscopes and torpedo tubes allowed submarines to engage enemy vessels while remaining hidden beneath the surface, transforming them into deadly predators of the deep.

The role of submarines in World War I extended beyond mere military tactics; it fundamentally altered the nature of naval warfare. The concept of unrestricted submarine warfare challenged established norms of maritime conduct and tested the limits of international law. The sinking of civilian vessels sparked debates over the ethics of targeting non-combatants and influenced subsequent treaties and conventions governing naval warfare. Furthermore, the fear instilled by U-boat attacks prompted the development of anti-submarine measures, leading to advancements in sonar technology and convoy escort tactics that would shape naval strategy in future conflicts.

Despite their significant impact, the legacy of WW1 submarines is often overshadowed by other aspects of the war. However, their contributions should not be overlooked. These silent warriors played a pivotal role in shaping the course of maritime history, showcasing the evolving nature of warfare in the modern age. From their humble beginnings to their lasting influence on naval doctrine, submarines of the Great War left an indelible mark on the annals of military history, forever earning their place as integral players in the theater of war.

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