autism spectrum disorder thesis

Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review

• Original Article
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• Published: 16 February 2021
• Volume 8 , pages 267–284, ( 2021 )

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• Amber Makino   ORCID: orcid.org/0000-0003-2406-575X 1 , 2 , 3 ,
• Laura Hartman 1 , 4 ,
• Gillian King 1 , 4 ,
• Pui Ying Wong 3 &
• Melanie Penner 1 , 2 , 3 , 5 , 6  

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The purpose of this review was to identify the quantity, breadth, and methodological characteristics of literature examining parent perspectives of autism spectrum disorder diagnosis, synthesize key research findings, and highlight gaps in the current literature. A systematic search was conducted for the period January 1994–February 2020. One hundred and twenty-two articles underwent data extraction. The majority of studies took place in Europe and North America in high-income countries. Over half of the studies used qualitative methodology. Four key components of the diagnostic experience were identified: journey to assessment, assessment process, delivery of the diagnosis and feedback session, and provision of information, resources, and support. Themes of parental emotions and parental satisfaction with the diagnostic process were also found.

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Autism spectrum disorder (ASD) is a neurodevelopmental disorder defined by impairment in social communication and the presence of restricted repetitive behaviors (American Psychiatric Association 2013 ). ASD has steadily increased in reported prevalence over the past decade (Maenner et al. 2020 ), leading to growing pressure on professionals and systems to provide timely and accurate diagnosis. Aspects of diagnosing ASD have been shown to be challenging for professionals. Firstly, while numerous clinical diagnostic guidelines have been published (Brian et al. 2019 ; Filipek et al. 2000 ; Johnson et al. 2007 ; National Collaborating Centre for Women’s and Children’s Health 2011 ; Volkmar et al. 2014 ; Whitehouse et al. 2018 ), they vary in their recommendations for assessment and are of variable quality, especially in regard to applicability and rigor of development (Penner et al. 2018 ). This variability has led to inconsistent processes and practices across systems, with diagnostic pathways varying according to where a child lives. Delivering the diagnosis to families has also been shown to be challenging for professionals. In a recent large-scale United Kingdom (UK) survey of professionals providing ASD diagnoses, the three most challenging aspects of delivering an ASD diagnosis were reported to be (1) ensuring caregivers understood the diagnosis and why it was given; (2) communicating information that could be comprehended by the family; and (3) managing familial distress (Rogers et al. 2016 ). Professionals are also challenged by making ASD diagnoses and refer to the complexities of assessment, especially when evaluating phenotypic profiles that are seen as “atypical” (e.g., subtle cases, ASD in females) (Rogers et al. 2016 ). Similar themes were found in qualitative studies of physicians caring for children with ASD, which identified barriers to conducting ASD diagnostic assessments including inadequate training, challenges disclosing the diagnosis to families, and concerns about how to help families navigate resources in a fragmented system (Jacobs et al. 2018 ; Penner et al. 2017 ).

While it is important to understand professionals’ views of ASD diagnoses and processes, parents of children diagnosed with ASD are experts on their children and family needs. The goal of diagnostic assessment is not only to clarify the diagnosis but also to help the caregivers and child understand the diagnosis and direct the family to appropriate supports (Abbott et al. 2013 ; Zwaigenbaum and Penner 2018 ). Because families are the constant in the child’s life, they are considered best suited to determine their young child’s needs. Providing family-centered care that supports this approach is broadly considered best practice within the field of pediatrics, especially among children with chronic conditions (King et al. 2004 ). Family-centered care models have also been linked with increased parent satisfaction, decreased parent stress, and improved child outcomes (King et al. 2004 ; Woodside et al. 2001 ). Having a thorough understanding of clients’ and families’ ASD diagnostic experience is an important starting point for optimizing care for children with ASD and their families. Parent perceptions and expertise should therefore be understood and integrated into considerations of the appropriateness of existing diagnostic pathways. To date, reviews have mostly focused broadly on parent perspectives of raising a child with ASD (DePape and Lindsay 2016 ; Keok 2012 ) as opposed to the more specific time period around diagnosis. Recently, a systematic review and meta-synthesis of the qualitative literature about the ASD diagnostic experience for parents in the UK was performed (Legg and Tickle 2019 ). However, to our knowledge, no existing work has provided a systematic, in-depth, and international review of the existing evidence about parent or caregiver perceptions of the ASD diagnostic process.

The purpose of the current review is to (a) identify the quantity, breadth, and methodological characteristics of the current literature examining parent and caregivers’ perspectives of ASD diagnosis, (b) summarize and synthesize key research findings, and (c) highlight gaps and limitations in the current literature to direct future research.

We conducted a scoping review, which is a method of knowledge synthesis that aims to systematically and comprehensively examine a broad exploratory research question (Colquhoun et al. 2014 ). This methodology was chosen given the heterogeneous nature of the research on parent perspectives of ASD diagnosis and our aim for a comprehensive review. The current scoping review was performed following a protocol that was developed a priori and followed the 5-stage framework outlined by Arksey and O'Malley ( 2005 ) and further refined by the Joanna Briggs Institute (Peters et al. 2015 ).

Stage 1: Identify the Research Question

This scoping review addressed the following broad question: What is known about parent or caregiver perspectives of the ASD diagnostic experience?

Stage 2: Identify Relevant Studies

A systematic search of CINAHL, EMBASE, MEDLINE (OVID), PsychINFO, and Scopus databases was conducted. These databases were selected for their relevance to the field concerned. We aimed to identify peer-reviewed articles published between January 1994 (when DSM IV criteria for autism were published) and February 2020 that were focused on the experiences of caregivers of children with ASD during the diagnostic process. A search strategy was developed in consultation with a hospital librarian (PW). All searches included at least one identifier for ASD (e.g., autism, Asperger) linked to at least one identifier for caregiver (e.g., parent), and diagnosis (e.g., assessment). Search terms were truncated when appropriate to maximize recall (see Table 1 for an example of our search strategy).

Stage 3: Select Studies

A systematic selection process was used to arrive at the final article set. After duplicate records were removed, the first author (AM) and principal investigator (MP) independently reviewed the titles and abstracts for relevance. At this stage, all articles identified by either author were included for full-text review. Full texts of potentially relevant articles were assessed by both authors independently for eligibility. Hand searching reference lists of highly relevant articles was also performed to identify additional studies. Inclusion criteria were purposely broad given the comprehensive nature of our research question and comprised of the following: (a) studies that collected or reported on experience data directly from parents/caregivers of a child with ASD; and (b) the diagnostic assessment or time surrounding diagnosis was specifically assessed. We decided not to include unpublished, non-peer-reviewed articles due to the considerable number of publications in peer-reviewed journals as well as the extensive number of unpublished theses found in this subject area, which led to concerns about the feasibility of accurately capturing the gray literature in our narrative synthesis of the study results. Non-English articles were excluded due to inability for the authors to accurately extract data. Consensus for inclusion was achieved between authors in face-to-face discussion. All articles were accessed electronically.

Stage 4: Charting and Analyzing the Data

Descriptive characteristics including the year of publication, country of origin, study methodology, and study objectives were extracted by AM using a customized data extraction sheet which was developed in a draft during protocol development. Findings related to parent perceptions of ASD diagnosis were also charted. This section of the data extraction form was trialed and refined in an iterative manner as familiarity with the data increased. The parent perceptions of the various components of the diagnostic process on which each article focused were identified and charted by AM. These key findings were then grouped under overarching themes which were organized into an inductive conceptual framework constructed through regular discussion between AM and MP. GK and LH reviewed and provided input on the final themes based on synthesized results .

Stage 5: Summarizing and Reporting the Results

The results were summarized in chart format with regard to time, location, and methodology. Quantitative analysis of parental perceptions is presented in tables indicating the frequency of themes in articles. Qualitative analysis of themes is presented narratively. A narrative synthesis format was chosen to discuss results as articles varied in terms of research design and data outcomes.

Search Results

Figure 1 outlines the study retrieval and selection results. The electronic search resulted in 6115 records . Two hundred and twelve articles were identified as potentially relevant. After applying inclusion and exclusion criteria, 122 articles were included.

Identification of included articles (PRISMA diagram)

Year of Publication

Studies were charted by year of publication demonstrating an increase in publications on the topic over the last decade with a dramatic increase in articles published since 2017 (see Fig.  2 ).

Number of articles by publication year

Study Methodology

Study methodology is summarized in Table 2 . More than half of the studies used qualitative methodology ( n  = 66) with the majority analyzing data from interviews and focus groups asking parents about their experience of receiving a diagnosis of ASD for their child. Almost one-quarter of the studies were quantitative questionnaire-based studies of parent perceptions of ASD diagnosis ( n  = 28). Mixed-methods studies made up 16% ( n  = 20) of the literature reviewed, mainly where questionnaire data was analyzed both quantitatively and qualitatively or interview and questionnaire data were combined.

Secondary research reflected the significant amount of qualitative literature in the area with our review finding four qualitative meta-syntheses of parent experiences. One systematic review and meta-synthesis looked at qualitative literature about the parental experience of their child receiving a diagnosis of ASD in the UK (Legg and Tickle 2019 ). Two meta-syntheses by the same author group looked at parental perceptions of advocating for their child with ASD, one specifically during the diagnostic process (Boshoff et al. 2019 ) and the other across the lifespan including diagnosis (Boshoff et al. 2018 ). One meta-synthesis looked at parental perceptions of caring for a child with ASD, in which the diagnostic experience was found to be a major theme (DePape and Lindsay 2016 ). Three non-systematic literature reviews that included discussion of literature on parental experience of ASD diagnosis were also found (Bloch and Weinstein 2009 ; Reed and Osborne 2012 ; Sritharan and Koola 2019 ). One commentary authored by a parent containing their personal experience with receiving an ASD diagnosis for their child was also published (Henderson 2017 ).

Location of Studies

Studies were charted by country of origin and this data was further categorized using the World Bank’s regional and income classification system (The World Bank 2019 ). Until 2004, all but one study took place in the UK or North America. After that time, studies from international sources have increased (see Fig.  3 ). However, over three-quarters of all primary studies were conducted in Europe and North America and 83% of studies were performed in high-income countries (see Tables  3 and 4 ).

Cumulative percentage of articles from countries outside of the UK and North America

Specific Populations

During the last decade, there has been an interest in looking at the unique diagnostic experiences of specific subgroups of parents and their children, including research focused on the experience of parents of girls with ASD (Rabbitte et al. 2017 ), autistic adults (Raymond-Barker et al. 2018 ), children with ASD who have visual impairment (de Verdier et al. 2019 ), and children with ASD who have hearing impairment (Wiley et al. 2014 ). Also, experiences of fathers of children with ASD (Hannon and Hannon 2017 ; Potter 2017 ), African American parents in the USA (Lovelace et al. 2018 ; Pearson and Meadan 2018 ), Latino parents in the USA (Lopez et al. 2018 ; Zuckerman et al. 2014 , 2017 ), immigrant families (Nilses et al. 2019 ; Rivard et al. 2019 ; Sakai et al. 2019 ), and military families (Cramm et al. 2019 ) have been studied.

Key Study Findings

Parental perceptions of ASD diagnosis were coded and organized into themes which were formed into an inductive conceptual framework identifying four central parts of the diagnostic experience for parents: (1) the journey to assessment, (2) the assessment process, (3) delivery of the diagnosis and feedback session, and (4) post-diagnostic provision of information, resources, and support. In addition, themes of parental emotions and reactions at the time of diagnosis and parental satisfaction were also identified. The frequency and presence of these themes in the articles of our review are displayed in Appendix Table 5. Experiences of the diagnostic process vary considerably given the heterogeneity of effects of ASD on individuals, characteristics, and experiences of caregivers, as well as regional variation in ASD diagnostic practice. In the proceeding narrative synthesis, we attempt to articulate the current state of knowledge of parental perceptions of ASD diagnosis based on the key themes identified in our review.

The Journey to Assessment

Of all the parts of the diagnostic experience, parental perceptions of the journey to assessment is the most studied aspect with 70% of articles ( n  = 85) in our review containing findings related to this theme. Overall, the journey to ASD diagnosis is perceived by parents as fraught with delays. The most common way studies measured this delay was with parent-reported time lapse from age of first concern to age of diagnosis with averages ranging from 12 months to 55 months (Bejarano-Martín et al. 2019 ; Chao et al. 2018 ; Crane et al. 2016 ; Hofer et al. 2019 ; Martinez et al. 2018 ; Moh and Magiati 2012 ; Ribeiro et al. 2017 ; Schelly et al. 2019 ). Studies also recorded parent-reported number of professionals consulted in order to obtain a diagnosis with an average of three to five professionals seen (Eggleston et al. 2019 ; Goin-Kochel et al. 2006 ; Hofer et al. 2019 ; Howlin and Asgharian 1999 ; Mahapatra et al. 2019 ; Siklos and Kerns 2007 ; Wong et al. 2017 ). The perceived barriers to timely ASD diagnosis by parents were studied in many articles and the most often reported include (1) false reassurance or dismissal of concerns by health care practitioners (Barnard-Brak et al. 2017 ; Boshoff et al. 2019 ; Brookman-Frazee et al. 2012 ; Chamak and Bonniau 2013 ; Chamak et al. 2011 ; Dababnah and Bulson 2015 ; de Verdier et al. 2019 ; Elder et al. 2016 ; Ferguson and Vigil 2019 ; Henderson 2017 ; Hidalgo et al. 2015 ; Legg and Tickle 2019 ; Lopez et al. 2018 ; Lovelace et al. 2018 ; Navot et al. 2017 ; Oswald et al. 2017 ; Pearson et al. 2020 ; Ribeiro et al. 2017 ; Sansosti et al. 2012 ; Schelly et al. 2019 ; Smith-Young et al. 2020 ; Stahmer et al. 2019 ; Sudhinaraset and Kuo 2013 ; Upoma et al. 2020 ; Wong et al. 2017 ), (2) lack of expertise in ASD diagnosis among consulted health care practitioners (An et al. 2020 ; Brookman-Frazee et al. 2012 ; Crane et al. 2018 ; Lloyd et al. 2019 ; Mitchell and Holdt 2014 ; Pearson and Meadan 2018 ; Pearson et al. 2020 ; Raymond-Barker et al. 2018 ; Reddy et al. 2019 ; Sansosti et al. 2012 ; Zarafshan et al. 2019 ), (3) lack of awareness and knowledge among parents of ASD signs and symptoms (An et al. 2020 ; Chao et al. 2018 ; Crane et al. 2018 ; Elder et al. 2016 ; Rivard et al. 2019 ; Schelly et al. 2019 ; Zuckerman et al. 2014 , 2017 ), (4) misdiagnosis or need for further referral extending wait times (Brookman-Frazee et al. 2012 ; Lloyd et al. 2019 ; Martinez et al. 2018 ; Rabbitte et al. 2017 ; Smith-Young et al. 2020 ; Stahmer et al. 2019 ; Upoma et al. 2020 ), (5) parental denial (Chao et al. 2018 ; Clasquin-Johnson and Clasquin-Johnson 2018 ; Crane et al. 2018 ; Dababnah et al. 2018 ; Hidalgo et al. 2015 ; Pearson and Meadan 2018 ; Sakai et al. 2019 ), (6) waitlist times for assessment (Lappe et al. 2018 ; Legg and Tickle 2019 ; Raymond-Barker et al. 2018 ; Sakai et al. 2019 ; Wong et al. 2017 ; Yi et al. 2020 ), and (7) cultural beliefs and differences that act as barriers to diagnosis (Dababnah et al. 2018 ; Mahapatra et al. 2019 ; Pearson and Meadan 2018 ; Reddy et al. 2019 ; Rivard et al. 2019 ; Sritharan and Koola 2019 ; Stahmer et al. 2019 ; Zeleke et al. 2018 ; Zuckerman et al. 2014 ).

The Assessment Process

There has been comparatively less research focus on parental perceptions of the diagnostic assessment process itself. Research on parental perceptions in this area tends to have a mix of positive and negative perception which may be related to practice variation in service delivery across studies. Many studies collected information on structural aspects of the diagnostic assessment such as who completed the assessment (Brogan and Knussen 2003 ; Crane et al. 2016 ; Daniels et al. 2017 ; Eggleston et al. 2019 ; Goin-Kochel et al. 2006 ; Hackett et al. 2009 ; Osborne and Reed 2008 ; Rhoades et al. 2007 ; Siklos and Kerns 2007 ; Zarafshan et al. 2019 ), where the assessment took place (Brogan and Knussen 2003 ; Renty and Roeyers 2006 ), and how long it took (Ha et al. 2017 ; Raymond-Barker et al. 2018 ). A number of studies reporting on parental perceptions of the process include comments on the length and perceived thoroughness of the overall assessment process with some studies reporting parents felt the process was too lengthy and overly comprehensive (Mulligan et al. 2012 ; Wong et al. 2017 ) and others reporting that the assessment was perceived as too short and superficial (Ha et al. 2017 , Selimoglu et al. 2013 ; Yi et al., 2020 ; Zarafshan et al. 2019 ). Some studies commented on parental perceptions of validity of methods used for assessment (Bejarano-Martín et al. 2019 ; Crane et al. 2018 ; Ha et al. 2017 ; Ho et al. 2014 ; Raymond-Barker et al. 2018 ; Wiley et al. 2014 ; Zarafshan et al. 2019 ) and professional’s qualifications, experience, or competence (Bejarano-Martín et al. 2019 ; Carlsson et al. 2016 ; de Verdier et al. 2019 ; Harrington et al. 2006 ; Wiley et al. 2014 ) with a mix of positive and negative perceptions. In a few studies, parents reported wanting to be prepared for the assessment with information on the nature and structure of the assessment upfront (Braiden et al. 2010 ; Hackett et al. 2009 ; Mockett et al. 2011 ). Desire and appreciation for parental involvement and collaboration with assessor was reported in a number of studies (Ha et al. 2017 ; Moh and Magiati 2012 ; Selimoglu et al. 2013 ; Wiley et al. 2014 ). Some studies commented on private assessment practices being perceived as superior to publicly funded assessments and also noting that the associated shorter wait times were also desirable (Ho et al. 2014 ; Hurt et al. 2019 ).

Two studies in this review compared parental perceptions between different diagnostic models (Ahlers et al. 2019 ; Reese et al. 2013 ). One study looked at parental perceptions of a model where assessment for ASD was done first by general pediatricians with only uncertain cases being referred for further assessment by psychologists compared with a model where all cases referred for psychologist ASD assessment. It found no significant differences in parental satisfaction, perceptions of family-centered care, or shared decision-making between the two models of assessment (Ahlers et al. 2019 ). The other study compared the process of completing diagnostic tools including the Autism Diagnostic Interview-Revised and the Autism Diagnostic Observational Schedule (Module 1) in-person versus using teleconferencing technology. The study found no significant difference in parent satisfaction when comparing both methods (Reese et al. 2013 ).

Delivery of the Diagnosis and Feedback Session

Nearly one-third of articles ( n  = 39) in our review reported parental perceptions of the delivery of the ASD diagnosis and feedback session. Findings indicate that the tone and approach employed when delivering the diagnosis of ASD is very important to parents. Caregivers report that they want professionals delivering the diagnosis to be empathetic (Finnegan et al. 2014 ; Ho et al. 2014 ; Jegatheesan et al. 2010 ; Molteni and Maggiolini 2015 ; Nissenbaum et al. 2002 ; Osborne and Reed 2008 ). Parents desire a strength-based approach that highlights positive attributes about their child and they want to hear optimistic statements about prognosis and intervention that preserve hope (Abbott et al. 2013 ; Crane et al. 2018 ; Mulligan et al. 2012 ; Nissenbaum et al. 2002 ). On a practical level, parents report wanting opportunity to ask questions and time to process the information provided (Abbott et al. 2013 ; Brogan and Knussen 2003 ; Molteni and Maggiolini 2015 ). Parents appreciate and desire discussion about prognosis and what might be expected in the future (Braiden et al. 2010 ; de Alba and Bodfish 2011 ; Hennel et al. 2016 ; Ho et al. 2014 ; Molteni and Maggiolini 2015 ; Osborne and Reed 2008 ).

A number of studies reported that parents perceived inadequate explanation of their child’s diagnosis (Samadi et al. 2012 ; Selimoglu et al. 2013 ; Yi et al., 2020 ; Zarafshan et al. 2019 ) whereas a few studies contained parental reports of being overwhelmed by the amount of information provided during the feedback (Abbott et al. 2013 ; Jashar et al. 2019 ; Renty and Roeyers 2006 ). Several studies found that when children have been given tentative diagnoses of “probably,” “suspected,” and “borderline” ASD as well as “autistic traits, tendencies, or features” this leads to parental confusion and lower levels of satisfaction (Brogan and Knussen 2003 ; Ho et al. 2014 ; Molteni and Maggiolini 2015 ; Samadi et al. 2012 ). Some studies reported a perceived hierarchical relationship between the physician and parent impacting effectiveness of communication (Carlsson et al. 2016 ; Ha et al. 2017 ; Ho et al. 2014 ).

Post-diagnostic Provision of Information, Resources, and Support

The provision of information and support immediately post-diagnosis was reviewed in more than one-third of the articles ( n  = 46) included in our review. Studies repeatedly showed that information at diagnosis is extremely important to parents. In particular, parents report that they value and desire information and recommendations that are tailored to the specific needs of their child, as opposed to more generic information on ASD (Crane et al. 2016 ; de Verdier et al. 2019 ; Hennel et al. 2016 ; Ho et al. 2014 ; Nissenbaum et al. 2002 ; Renty and Roeyers 2006 ; Sansosti et al. 2012 ). Specifically, caregivers report that being provided with information on intervention services (de Alba and Bodfish 2011 ; Hennel et al. 2016 ; Moh and Magiati 2012 ; Tait et al. 2016 ) and about school support (de Alba and Bodfish 2011 ; Hennel et al. 2016 ; Renty and Roeyers 2006 ) is highly important. Two studies reported that parents find it beneficial if they receive written information (Brogan and Knussen 2003 ; Chamak et al. 2011 ). In three studies, parents expressed a desire to be connected to other parents who have a child diagnosed with ASD where they could be provided with practical advice from other caregivers (de Verdier et al. 2019 ; Osborne and Reed 2008 ; Stahmer et al. 2019 ).

The post-diagnosis support provided to caregivers was widely reported to be unsatisfactory and an area of particular concern (Crane et al. 2016 ; Dababnah and Bulson 2015 ; Hurt et al. 2019 ; Jacobs et al. 2020 ; Legg and Tickle 2019 ; Mitchell and Holdt 2014 ; Potter 2017 ; Rasmussen et al. 2020 ; Raymond-Barker et al. 2018 ; Tait et al. 2016 ). Parents feel “alone” and abandoned after the diagnosis (Carlsson et al. 2016 ; Ho et al. 2014 ; Jegatheesan et al. 2010 ; Raymond-Barker et al. 2018 ; Tait et al. 2016 ) and multiple studies reported parental desire for further support and direction with service navigation and coordination (de Verdier et al. 2019 ; Legg and Tickle 2019 ; Pearson et al. 2020 ; Rabba et al. 2019 ; Tait et al. 2016 ). A number of studies mentioned barriers to accessing interventions including lack of referral to interventions provided (Yi et al., 2020 ; Zarafshan et al. 2019 ), language barriers (Ferguson and Vigil 2019 ; Jegatheesan et al. 2010 ; Sakai et al. 2019 ), and the need to advocate in order to get support (Carlsson et al. 2016 ; Mulligan et al. 2012 ; Rabbitte et al. 2017 ).

Parental Emotions and Reactions Around the Time of Diagnosis

Parent’s self-reported emotional reactions around the time of diagnosis were reported or analyzed in over half of all included articles ( n  = 64) in this review (see Appendix Table 5). Overall, the literature indicates that receiving a diagnosis of ASD for their child is an emotionally intense experience for parents. Parents reported a range of difficult reactions to a diagnosis of ASD in their child including the commonly described feelings of shock, sadness, stress, grief, denial, guilt, anger, and worry. A number of studies reported that parents felt the diagnosis of ASD was associated with stigma which led to shame and isolation (Russell and Norwich 2012 ; Sakai et al. 2019 ; Sansosti et al. 2012 ; Tait et al. 2016 ). However, the most frequently cited reaction to the diagnosis across studies was relief, and parents also report positive aspects of the diagnosis including providing an explanation for their child’s behavior for which they are not to blame (Jacobs et al. 2020 ; Nissenbaum et al. 2002 ; Reddy et al. 2019 ) and as a means of accessing support for their child (Chamak et al. 2011 ; Chell 2006 ; Nissenbaum et al. 2002 ; Osborne and Reed 2008 ; Rasmussen et al. 2020 ; Russell and Norwich 2012 ).

Satisfaction

Parental satisfaction was examined in more than three-quarters of quantitative studies ( n  = 23) in this review (see Appendix Table 5). A majority of the studies measured parental satisfaction with the diagnostic process overall (Chamak and Bonniau 2013 ; Chamak et al. 2011 ; Crane et al. 2016 ; Eggleston et al. 2019 , Goin-Kochel et al. 2006 ; Hidalgo et al. 2015 ; Hofer et al. 2019 ; Howlin and Asgharian 1999 ; Howlin and Moore 1997 ; Jashar et al. 2019 ; Renty and Roeyers 2006 ; Sansosti et al. 2012 ; Siklos and Kerns 2007 ; Yi et al., 2020 ) and some studies measured satisfaction with various components of the process such as: professional response to initial concerns (Bejarano-Martín et al. 2019 ), wait times for assessment (Bejarano-Martín et al. 2019 ; Eggleston et al. 2019 ), methods used for assessment (Bejarano-Martín et al. 2019 ; Raymond-Barker et al. 2018 ), communication style of the diagnosing professional (Bejarano-Martín et al. 2019 ; Brogan and Knussen 2003 ; Crane et al. 2016 ), information provided at diagnosis (Bejarano-Martín et al. 2019 ; Brogan and Knussen 2003 ; Chiu et al. 2014 ; Crane et al. 2016 ; Mansell and Morris 2004 ; Raymond-Barker et al. 2018 ), the diagnostic report (Eggleston et al. 2019 ) and post-diagnostic supports (Bejarano-Martín et al. 2019 ; Crane et al. 2016 ; Eggleston et al. 2019 ; Mansell and Morris 2004 ). While the majority of studies used Likert scales to measure satisfaction, there is inconsistency between studies with how the scales were defined. Studies also examined the correlation between overall satisfaction with the diagnostic process and other factors such as age of child at diagnosis (Brogan and Knussen 2003 ; Goin-Kochel et al. 2006 ; Renty and Roeyers 2006 ; Siklos and Kerns 2007 ), severity level, or features of ASD (Brogan and Knussen 2003 ; Howlin and Asgharian 1999 ; Jashar et al. 2019 ; Moh and Magiati 2012 ), parent income and/or education level (Goin-Kochel et al. 2006 ; Hidalgo et al. 2015 ; Jashar et al. 2019 ) and family race/ethnicity (Jashar et al. 2019 ). A few studies have correlated decreased satisfaction with increased parental reported stress levels during the diagnostic period (Crane et al. 2016 ; Jashar et al. 2019 ; Moh and Magiati 2012 ). Perhaps unsurprisingly, multiple studies have found that delay in diagnosis correlated with decreased levels of parental satisfaction with the diagnostic process overall (Bejarano-Martín et al. 2019 ; Crane et al. 2016 ; Goin-Kochel et al. 2006 ; Howlin and Moore 1997 ; Howlin and Asgharian 1999 ; Mansell and Morris 2004 ; Moh and Magiati 2012 ; Sansosti et al. 2012 ; Wong et al. 2017 ). Studies also made attempts to see how other key aspects of the diagnostic process affect overall satisfaction. Overall satisfaction has been found to positively correlate with satisfaction with the following areas: professional’s initial reactions to first concerns (Brogan and Knussen 2003 ), manner of the diagnosing professional (Brogan and Knussen 2003 ; Crane et al. 2016 ; Moh and Magiati 2012 ), information provided at diagnosis (Brogan and Knussen 2003 ; Crane et al. 2016 ; Moh and Magiati 2012 ; Renty and Roeyers 2006 ), the diagnostic report (Eggleston et al. 2019 ), and post-diagnostic supports (Crane et al. 2016 ). Across studies results of correlation attempts have been inconsistent and there is great variation in how these correlates were measured.

This review summarizes the growing body of research on parent perceptions of ASD diagnosis using systematic methods. Over the last two decades, research on the topic has evolved from focusing on studies originating in North America and the UK to a more global perspective, reflective of increasing research activity and awareness of ASD around the world. However, over three-quarters of studies in this review still took place in Europe and North America among high-income countries. As we anticipate the global interest in research of the diagnostic experience to continue to grow and evolve, research synthesizing perspectives by location, such as the recent meta-synthesis from the UK by Legg and Tickle ( 2019 ), would be helpful to further understanding how to improve systems on a local level. Our work also showed that more recent research has begun examining the unique experiences of different subgroups of children and parents, showing recognition of the fact that receiving a diagnosis of ASD for one’s child is a complex and individual experience influenced by personal, cultural, and environmental factors.

The current review revealed four central components of the diagnostic experience that are often studied: the journey to assessment, the diagnostic assessment itself, delivery of the diagnosis, and provision of information and support. Many articles in the review also studied parental emotions at the time of diagnosis and many measured parental satisfaction with the diagnostic process. While some jurisdictions were able to show a general trend over time towards increasing satisfaction among parents (Chamak et al. 2011 ; Crane et al. 2016 ), overall this review revealed many aspects of the diagnostic process that should be highlighted for improvement.

This review shows that wait times for diagnostic assessment have been a persistent concern among parents over the years with many families reporting their journey to diagnosis lasting multiple years. This is a concern from a public health perspective; delay in accessing diagnosis often means delay in accessing early therapies, which have been shown to be more effective at younger ages (Perry et al. 2011 ). Multiple studies in this review reveal that the wait period between initial referral for concerns and assessment is especially anxiety provoking and affects families’ overall satisfaction with the diagnostic process (Abbott et al. 2013 ; Bejarano-Martín et al. 2019 ; Crane et al. 2016 ; Goin-Kochel et al. 2006 ; Howlin and Moore 1997 ; Howlin and Asgharian 1999 ; Mansell and Morris 2004 ; Moh and Magiati 2012 ; Sansosti et al. 2012 ; Wong et al. 2017 ). This presents a strong argument to provide families with clear expectations for an expected length of wait for a diagnosis, as well as efforts to help families feel supported while they wait. Research examining how best to build capacity for diagnosis to reduce wait times and support timely access to services has the potential to improve the diagnostic experience for families.

Our review also indicates that parents perceive cultural barriers and stigma as contributors to delays in their decision to access diagnosis (Dababnah et al. 2018 ; Mahapatra et al. 2019 ; Pearson and Meadan 2018 ; Reddy et al. 2019 ; Rivard et al. 2019 ; Sritharan and Koola 2019 ; Stahmer et al. 2019 ; Zeleke et al. 2018 ; Zuckerman et al. 2014 ). Identifying and addressing such cultural factors could influence early detection for many families. There is a need for initiatives that address cultural barriers and stigma as well as for increasing the amount, quality, and diversity of research in this area for a more comprehensive understanding of the factors and how best to address them. In the interim, clinicians should seek to understand parents’ experiences of their child’s diagnosis and potential cultural influences on the family’s perception of diagnosis in order to provide supports and services that are best tailored and beneficial to the family. There is research to indicate that the impact of stigma tends to decrease over time as parents form social networks of people who accept their child’s ASD diagnosis (Gray 2002 ). Practitioners should attempt to connect families to support networks early. Longer term studies demonstrate that many parents describe benefits to caring for a child with ASD such as becoming more patient, less judgmental, and better at coping with life’s challenges (DePape and Lindsay 2016 ). Our review revealed that connecting families with experienced peer supports is desired (de Verdier et al. 2019 ; Osborne and Reed 2008 ; Stahmer et al. 2019 ) and may help dispel negative stereotypes and highlight these rewards of caring for a child with ASD.

Attitudes and knowledge of professionals were also reported to be a barrier to diagnosis from the parent perspective in our review. Early identification of ASD is complex due to the significant heterogeneity in presentation (Anagnostou et al. 2014 ). It is clear, however, that professionals should be careful not to dismiss early parental concerns. In fact, recent research confirms that parents are often more accurate than clinicians in identifying clinically relevant behaviors in toddlers with ASD based on their day-to-day observations (Sacrey et al. 2018 ). Primary care providers have been shown to often be parents’ first point of contact after a concern has been identified and education efforts focused on this group are likely to improve access to diagnosis (Hyman et al. 2020 ).

Our review revealed that little attention has been given to parent perceptions of diagnostic assessment methods. This is in contrast to the amount of research examining the diagnostic accuracy of various tools for diagnosis (Randall et al. 2018 ). A recent Canadian study examining self-reported practice patterns and wait times for ASD diagnosis revealed an association between longer time spent on assessment and longer total wait from referral to diagnosis (Penner et al. 2018 ). Our review found that parents prefer to know what to expect in terms of length and components of the assessment ahead of time and that they expect the diagnostician or diagnostic team to collaborate with them, taking the time to understand their perspectives as experts on their own children (Ha et al. 2017 ; Moh and Magiati 2012 ; Selimoglu et al. 2013 ; Wiley et al. 2014 ). However, further study is needed to examine acceptability of different assessment methods and diagnostician characteristics (i.e., multi-disciplinary team versus solo practitioner, generalist versus sub-specialist). In our review, two studies comparing different diagnostic models examined parent acceptability (Ahlers et al. 2019 ; Reese et al. 2013 ). Future studies examining the accuracy and efficiency of different assessors and assessment methods should also consider parent acceptability as this has the potential to affect acceptance of the diagnosis and sets the tone for future interactions with healthcare and support services.

Our review highlights that parent preferences in regard to diagnosis delivery echo many of the themes noted in studies of parents receiving a diagnosis of other childhood disabilities, chronic diseases, and even life-threatening illness (Sardell and Trierweiler 1993 ; Sharp et al. 1992 ; Sloper and Turner 1993 ). Parents receiving life-changing diagnoses want clarity, transparency, compassion, and optimism. They remember in vivid detail their diagnostic experiences and perceive the delivery of the diagnosis as framing their experience going forward either positively or negatively. They also perceive that the delivery of the diagnosis affects their future coping and adjustment. The Autism Treatment Network Guide for Providing Effective Feedback to Families Affected by Autism (Austin et al. 2012 ) contains practical recommendations for ASD diagnosis delivery, including preparing for the session, discussing the child’s strengths, prioritizing next steps, and providing written information. However, no guideline can provide the best response for each question posed by each family. Our study showed variation in preferences among parents, such as individual differences in the preferred amount and form in which information is provided. This speaks to the additional requirement that providers be flexible and able to adjust in real-time to the family in front of them.

Our review found that challenges and stress associated with navigating the healthcare system persist long after diagnosis. Diagnosis appears to be just one event in an ongoing series of adaptations. Our review highlighted that parents often feel alone and burdened with educating themselves on how best to care for their child. However, reviews that take a longer lifespan perspective indicate that parents often evolve from feeling dissatisfied with the information received to feeling empowered as advocates for their child (DePape and Lindsay 2016 ). A recent qualitative study on parent engagement showed the close relationship between parent engagement and the process of navigating the system (Gentles et al. 2019 ). Parents themselves have suggested various supports that could be helpful during this period including one-stop access to therapy, access to advisors, and other case coordination support (Legg and Tickle 2019 ; Pearson et al. 2020 ; Rabba et al. 2019 ; Tait et al. 2016 ). As current early identification efforts are happening in the context of limited publicly funded services and long waitlists for therapy, innovative treatment delivery models are likely required. Some parents are highly motivated to take action to help their children during this time, and parent-mediated therapies such as Social ABCs (Brian et al. 2017 ) and Joint Attention Symbolic Play and Engagement Regulation (JASPER; Shire et al. 2016 ) may present effective options.

Parent perspectives in our review show alignment as well as important differences when compared with the perspectives of professionals and service providers in studies. Like parents, professionals are concerned about accessibility and have also indicated a need to improve knowledge and training of professionals referring individuals to ASD diagnostic services, to create effective referral pathways, and to reduce wait times (Rogers et al. 2016 ). Studies of professionals’ perceptions indicate that one of the most helpful aspects of an ASD diagnosis is the practical supports that the diagnosis opens up in terms of information, explanation, and supports (Jacobs et al. 2018 ). Our review indicates that while parents are seeking supports, they perceive that the supports they receive are often lacking, leaving them responsible for information-seeking and navigation. Clinicians should be mindful of this gap between their perceived utility of the ASD diagnosis and the perceptions of families, who shoulder much of the post-diagnostic work of accessing information and services. The concern from professionals about managing distress and appropriately tailoring information to the needs of parents (Rogers et al. 2016 ) indicates that diagnosticians are acutely aware of the emotional impact of delivering a diagnosis and they see the value of adapting information to the family in front of them.

Our review revealed that for parents, receiving a diagnosis of ASD for their child is an emotionally complex process. While our review revealed a diverse range of challenging emotions experienced, many parents also reflected on positive aspects of diagnosis. Helping parents frame diagnosis around these positive aspects, which include providing understanding of their child’s behavior, relieving guilt and self-blame, and as a means of accessing support, may help parents adjust to the diagnosis. At the same time, denial appeared to be a common barrier and parental reaction to diagnosis. Clinicians need to validate that the experience of receiving a diagnosis can be scary and they should try to meet parents where they are at in their personal emotional process. Relational continuity between care providers and families allows reactions and perceptions to be revisited and is likely to be particularly beneficial.

In addition to the gaps in research already highlighted, a major limitation of the current literature is the inconsistency of tools used to measure parent satisfaction, which tends to be a poorly defined term. Because of this variability, meta-analysis of the existing quantitative literature is not currently possible. Studies interested in measuring trends in parent satisfaction over time or with adjustments to the process should give consideration to using consistent scales and validated tools, such as the Measures of Processes of Care (King et al. 1995 ), a standardized measure of perceptions of family-centeredness of care.

There are some limitations associated with this review. Although we had intended to include gray literature, due to the large number of articles we retrieved in the scientific literature, we were unable to extend our search to gray literature, excluding many thesis projects in the area. This would be important to note and consider if any further qualitative syntheses of the literature are being performed. As well, we limited the included studies to those disseminated in English, which may have decreased the international content and therefore limits generalizability of our results. Despite this limitation, the review still captured many studies from around the world, adding a global perspective to our synthesis. Due to the heterogeneity of methodological approaches in the literature at this time, a scoping review with narrative summary was selected as the most appropriate method but we anticipate that as the body of the literature continues to grow, other more precise methods of analysis will be possible and more appropriate including meta-synthesis and meta-analysis.

This scoping review revealed a growing body of literature looking at the experience of parents during ASD diagnostic assessment. In recent years, there has been a shift in the literature towards understanding the unique experiences of different subgroups of parents and children and a more global perspective in the literature, although gaps remain in terms of understanding the full breadth of factors that influence the diagnostic experience for all families. Researchers are encouraged to study parent acceptability with the evolution of diagnostic pathways. There are certain elements of the diagnostic experience that have been studied in depth including the path to assessment, the diagnostic assessment itself, the delivery of the diagnosis, and provision of supports. Despite variation in experience and satisfaction, studies indicate that diagnosis is a uniquely stressful and emotionally intense experience for parents.

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Makino, A., Hartman, L., King, G. et al. Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review. Rev J Autism Dev Disord 8 , 267–284 (2021). https://doi.org/10.1007/s40489-021-00237-y

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A systematic review of the thesis on language and communication skills of individuals with autism spectrum disorder

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The Impact of Autism Spectrum Disorder on Parents in Arab Countries: A Systematic Literature Review

Jamal m. alkhateeb.

1 Department of Special Education, The University of Jordan, Amman, Jordan

Muna S. Hadidi

Wissam mounzer.

2 Department of Special Education, Stockholm University, Stockholm, Sweden

Associated Data

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author/s.

Having a child with autism spectrum disorder can have significant psychological effects on parents. This systematic review summarizes the current state of literature underscoring the impact of autism spectrum disorder (ASD) on parents in Arab countries

A systematic search of seven databases (PubMed, Scopus, ProQuest, Google Scholar, ERIC, Academic Search Complete, and PsycINFO) was performed, which identified 24 studies (20 quantitative studies and four qualitative studies) that included 3,299 parents or caregivers of children with ASD. These studies were conducted in 10 Arab countries (Saudi Arabia, Jordan, Egypt, Kuwait, Bahrain, Oman, Emirates, Palestine, Qatar, and Lebanon).

The majority of the included studies found that ASD has a significant negative impact on the mental health and wellbeing of Arab parents. It was found that parents of children with ASD have a poor quality of life (QoL) and an increased risk of psychological disorders. These findings were in contrast to findings of parents of typically developing children and children with other developmental disorders. Challenges faced by parents of children with ASD were associated with several child- and parent-related factors. The most common coping strategy used by parents was religious coping.

The impact of ASD on parents has only recently gained traction among researchers in Arab countries. Despite several knowledge gaps, published studies have provided useful information outlining the impact of ASD on parents in some of these countries. Further research comprising larger random samples and using varied research and data-collection methods is required to understand the multifaceted challenges experienced by parents raising children with ASD in Arab countries.

Introduction

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder that intersects racial, ethnic, and socioeconomic boundaries, and is characterized by persistent impairments in social interactions, verbal and non-verbal communication, as well as restricted and repetitive patterns of behavior, interest, or activities (American Psychiatric Association, 2013 ). Over the past three decades, there has been a global increase in the prevalence of ASD (Elsabbagh et al., 2012 ; Blaxill et al., 2022 ).

Extensive research indicates that parents of children with ASD often experience elevated levels of parenting stress (Hoffman et al., 2009 ), increased mental health problems (Cohrs and Leslie, 2017 ), and reduced physical health (Smith et al., 2012 ; Eisenhower et al., 2013 ) in contrast to parents of typically developing children (Ingersoll and Hambrick, 2011 ; Padden and James, 2017 ), and parents of children diagnosed with other disabilities (Hayes and Watson, 2013 ; Barroso et al., 2018 ). Furthermore, ASD significantly impacts family life as well as the marriage system (Karst and Van Hecke, 2012 ; Serrata, 2012 ; Pisula and Porebowicz-Dörsmann, 2017 ).

Increasing evidence suggests that the impact of ASD on parents may be attributed to the severity of the emotional and behavioral problems exhibited by the child (Leyfer et al., 2006 ; Baker et al., 2012 ; Karst and Van Hecke, 2012 ). Furthermore, this is exacerbated by exhaustive caregiving demands, poor parental coping capabilities, lack of support (Weiss et al., 2014 ; Papadopoulos, 2021 ), economic burden (Ou et al., 2015 ), as well as the perception and understanding of ASD among parents (Ilias et al., 2018 ).

The literature also suggests that cultural background is an important variable to consider when analyzing the impact of ASD on parents (Ilias et al., 2018 ; Zakirova-Engstrand et al., 2020 ). Parents' awareness and beliefs about the etiology and prognosis of ASD can affect parental responses, coping strategies, as well as treatment decision-making (Hebert and Koulouglioti, 2010 ; Zuckerman et al., 2016 ; Brewton et al., 2021 ).

The majority of ASD research has been conducted across the United States (US) and the United Kingdom (UK) (Clark and Adams, 2020 ; Roche et al., 2021 ), in contrast to other parts of the world where research on ASD is relatively limited (Samadi and McConkey, 2011 ; Rice et al., 2012 ). In Arab countries, ASD is a new field of research that has gradually evolved in the past two decades. However, severe information disparities with regards to the different aspects of ASD have been noted, namely, epidemiology, characteristics, burden, as well as support available to children and families.

To date, four literature reviews have been published on ASD research in Arab countries (Hussein and Taha, 2013 ; Salhia et al., 2014 ; Alnemary et al., 2017 ; Alallawi et al., 2020 ). Alallawi et al. ( 2020 ) conducted a systematic scoping review of social, educational, and psychological research relevant to persons with ASD and their families in Arab countries. Using eight databases, Alallawi et al. ( 2020 ) identified 70 studies published predominantly by researchers from Saudi Arabia and Lebanon. Most of the identified studies investigated the prevalence of ASD; diagnosis issues; the experiences and outcomes of Arab caregivers for individuals with ASD; as well as the social and communication behavior of Arab individuals with ASD. The results of the scoping review revealed significant gaps in research related to ASD interventions and services. Furthermore, upon appraisal of the identified studies, the authors found them to be of low quality.

Alnemary et al. ( 2017 ) reviewed published research on ASD in the Arab world from 1992 to 2014. The authors searched for studies published in English using PubMed, Web of Science, and EMBASE databases. In total, the authors identified 142 publications that were produced mostly by researchers in Saudi Arabia, Egypt, and Oman. For the most part, these publications addressed the biology, risk factors, and diagnosis of ASD. However, limited studies investigated intervention, services, infrastructure and surveillance, or life span issues related to ASD.

Hussein and Taha ( 2013 ) analyzed published literature on ASD in the Arab world from 1992 to 2012 using the Medline database. In total, 79 articles were identified that focused predominantly on the etiology of ASD as opposed to services and interventions.

Finally, Salhia et al. ( 2014 ) conducted a systemic review of the epidemiology of ASD in Arab Gulf countries, namely, Saudi Arabia, United Arab Emirates, Oman, Kuwait, Qatar, and Bahrain. The literature search was conducted using PubMed and ScienceDirect databases. However, limited studies investigating the epidemiology of ASD were identified by the authors. Those studies showed a prevalence rate ranging from 1.4 to 29 per 10,000 persons. Furthermore, no studies explored the burden of ASD on the child, family, or society.

Due to the limited scientific evidence available on challenges faced by parents raising children with ASD in Arab countries (Alnemary et al., 2017 ; Al Khateeb et al., 2019 ; Alallawi et al., 2020 ), the current systematic literature review was undertaken. This review aimed to address this crucial knowledge gap in ASD research by locating and synthesizing all studies underscoring the impact of ASD on parents in Arab countries.

Search Strategy

Studies investigating the impact of ASD on parents in Arab countries were reviewed and analyzed. To identify the relevant literature, seven databases were searched, namely, PubMed, Google Scholar, ERIC, CINAHL, Education Research Complete, Springer Link, and Psychology and Behavioral Sciences Collection. The review was conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Moher et al., 2009 ). Three sets of search terms were used in the initial search, namely, “Autism” OR “ASD” OR “Asperger” OR “Pervasive Developmental Disorders” AND “parents” OR “mothers” OR “fathers” OR “stress” OR “well-being” OR “mental health problems” AND “Arab countries” OR “Algeria” OR “Egypt” OR “Libya” OR “Tunisia” OR “Morocco” OR “Mauritania” OR “Sudan” OR “Somalia” OR “Djibouti” OR “Bahrain” OR “Emirates” OR “Oman” OR “Kuwait” OR “Qatar” OR “Saudi” OR “Yemen” OR “Jordan” OR “Syria” OR “Iraq” OR “Lebanon” OR “Comoros” OR “Palestine.” Furthermore, the key concept of ASD was searched using the term “Arab countries OR Arab World” to identify studies that might have been omitted. Finally, the reference lists of the studies included in the review were scanned for additional studies.

Inclusion and Exclusion Criteria

This review included studies that were: empirical, conducted in an Arab country, related to ASD impact on parents, published in English, and published in a peer-reviewed journal. Literature reviews, doctoral dissertations or master theses, conference papers, chapters, and theoretical articles were excluded. Publication dates were not restricted to ensure all possibly relevant articles were included.

Study Selection

Figure 1 presents a flowchart of the process used to identify and select relevant studies. The database and keyword search listed above yielded 714 studies. Eighty-eight articles were excluded due to duplication across the databases. Upon screening the titles for eligibility, 572 articles were excluded. Furthermore, seven articles were excluded after reading the abstracts. After assessing the full texts of the remaining 47 articles, 22 articles were excluded. These articles were excluded because 10 of them were not empirical studies, six were review articles, three articles were not available in full text and five articles were not primary studies. A manual search of reference lists of the identified articles resulted in the identification of two additional studies. Therefore, the final sample included 24 studies.

PRISMA flow chart of the study identification process.

Charting the Data

The authors developed a coding form to assist with the data extraction. The coding form comprised sections designed to obtain information regarding the author(s), publication year, country, purpose, methods, and key findings. Thereafter, the first author used this chart to extract data from the included articles. The second author independently extracted data for 29% ( n = 10) of the included articles. Disagreements among the authors were resolved through discussion. Finally, the information was analyzed to identify themes and gaps in the literature and to suggest implications for future research and practice.

Description of the Included Studies

Table 1 summarizes the study design, sample, main objectives, methods, and key findings of the 24 included publications. The studies underscoring the impact of ASD on parents in the Arab world were conducted in 10 countries. Among these publications, six were from Saudi Arabia, six were from Jordan, three were from Egypt, two were from Kuwait, two were from Bahrain, and one study was from Oman, Emirates, Palestine, Qatar, and Lebanon. The remaining Arab countries, namely, Algeria, Libya, Tunisia, Morocco, Mauritania, Sudan, Somalia, Djibouti, Yemen, Syria, Iraq, or Comoros, did not have any published articles.

Overview of the included studies ( n = 24).

Twenty publications (84%) were quantitative studies, which were mostly cross-sectional, while four publications (16%) were qualitative studies. The samples used in eight of the studies included only mothers (Obeid and Daou, 2015 ; Al-Kandari et al., 2017 ; Al-Ansari and Jahrami, 2018 ; Gobrial, 2018 ; Al Ansari et al., 2021 ; El-Monshed and Amr, 2021 ; Shattnawi et al., 2021 ; Lamba et al., 2022 ), while one study (Ahmad and Dardas, 2015 ) included only fathers.

Data Collection Tools

This review employed 19 different data collection tools including the World Health Organization Quality of Life Assessment (WHOQOL-BREF), the Depression, Anxiety and Stress Scale (DASS-21), the Perceived Stress Scale (PSS), the 36-Item Short Form Survey (SE-36), the Brief Version of the Coping Orientation to Problems Experienced Inventory (Brief -COPE), the Hospital Anxiety and Depression Scale (HADS), Oberst Caregiver Burden Scale time and difficulty subscales (OCBS-T and OCBS-D), Bakas Caregiving Outcome Scale (OCBS), Zarit Burden Interview (ZBI-12), Patient Health Questionnaire (PHQ)-9, Parenting Stress Index—Short Form (PSI—SF), Ways of Coping Checklist-Revised (WCC-R), Beck's Depression Inventory (BDI), the Standard Recall Short Form 36 (SF-36 v2), Family Stress and Coping Interview-Adapted Scale (FSCI-A), the Satisfaction with Life Scale (SWLS), Interpersonal Support Evaluation List (ISEL), General Health Questionnaire (GHQ-12), and the Positive Reappraisal Coping (PRC) Subscale of the Cognitive Emotion Regulation Questionnaire (CERQ).

The included studies were all published in the past 10 years and most of these studies ( n = 16, 67%) were conducted between 2017 and 2021.

Participants in the Included Studies

In total, 3,299 parents or caregivers, namely, 2,415 parents or caregivers of children with ASD and 884 controls, were included as participants in these studies. The total number of mothers and fathers of children with ASD was 813 and 327, respectively. Eleven studies comprising 1,275 parents or caregivers of children with ASD did not specify the gender of the parent and referred only to the term “parents” (Kheir et al., 2012 ; Almansour et al., 2013 ; Fido and Al Saad, 2013 ; Al-Farsi et al., 2016 ; and Rayan and Ahmad, 2017 ; Al-qahtani, 2018 ; Alnazly and Abojedi, 2019 ; Alshekaili et al., 2019 ; Amireh, 2019 ; Alenazi et al., 2020 ; Khusaifan and El Keshky, 2021 ). All the studies used non-probability sampling methods (i.e., convenience samples, purposefully selected samples, snowball samples, and voluntary samples) except for one study which used a probability sample (a systematic random sample; Alshekaili et al., 2019 ).

Impact of ASD on Parents

Data from studies included in this review revealed that parents raising children with ASD in Arab countries experience considerable stress and strain. Nine studies reported high levels of parental stress (Dababnah and Parish, 2013 ; Dardas and Ahmad, 2014 ; Ahmad and Dardas, 2015 ; Al-Farsi et al., 2016 ; Rayan and Ahmad, 2017 ; Amireh, 2019 ; Al Ansari et al., 2021 ; El-Monshed and Amr, 2021 ; Khusaifan and El Keshky, 2021 ). Furthermore, depression symptoms were reported among parents in nine studies (Almansour et al., 2013 ; Dababnah and Parish, 2013 ; Fido and Al Saad, 2013 ; Al-Farsi et al., 2016 ; Rayan and Ahmad, 2017 ; Alnazly and Abojedi, 2019 ; Al Ansari et al., 2021 ; Alshahrani and Algashmari, 2021 ). Anxiety was experienced by parents in six studies (Almansour et al., 2013 ; Al-Farsi et al., 2016 ; Rayan and Ahmad, 2017 ; Alnazly and Abojedi, 2019 ; Al Ansari et al., 2021 ). Decreased QoL of parents was found in five studies (Kheir et al., 2012 ; Dardas and Ahmad, 2014 ; Ahmad and Dardas, 2015 ; Alenazi et al., 2020 ). Physical health problems were reported in two studies (Al-qahtani, 2018 ; Shattnawi et al., 2021 ). Five studies reported social burden among parents of children with ASD (Al-qahtani, 2018 ; Gobrial, 2018 ; Alenazi et al., 2020 ; Al-Masa'deh et al., 2020 ; Shattnawi et al., 2021 ), while four studies reported psychological burden (Dababnah and Parish, 2013 ; Al-Ansari and Jahrami, 2018 ; Al-qahtani, 2018 ; Shattnawi et al., 2021 ). Parents of children with ASD reported financial burden in three of the studies (Dababnah and Parish, 2013 ; Al-qahtani, 2018 ; Shattnawi et al., 2021 ).

Parents of Children With and Without ASD

In six studies, parents raising children with ASD were compared with parents raising children with other disabilities and children without any disabilities (Fido and Al Saad, 2013 ; Obeid and Daou, 2015 ; Al-Farsi et al., 2016 ; Al-Ansari and Jahrami, 2018 ; Amireh, 2019 ; Al Ansari et al., 2021 ). These studies were conducted in six Arab countries, namely, Bahrain, Oman, Saudi Arabia, Egypt, Kuwait, and Lebanon. The majority of these studies found that parents of children with ASD experienced higher levels of stress, reduced wellbeing, and other psychological difficulties compared to the controls. One study found that there were no significant differences between parents of children with ASD and controls in QoL or physical health (Al-Ansari and Jahrami, 2018 ). Furthermore, Fido and Al Saad ( 2013 ) found no significant differences in psychological distress between fathers of children with ASD and fathers of typically developing children. Only four studies made a comparison in parental stress among mothers and fathers of children with ASD. In two studies, no significant differences were found between the fathers and mothers of children with ASD in terms of depressive symptoms (Alshahrani and Algashmari, 2021 ), or physical, psychological, and social wellbeing (Dardas and Ahmad, 2014 ). However, two other studies reported that mothers experienced significantly higher levels of depressive symptoms (Al-Farsi et al., 2016 ) and impaired QOL in contrast to fathers (Alenazi et al., 2020 ).

Factors Associated With the Impact of ASD on Parents

Factors associated with psychological disorders and the burden experienced by parents of children with ASD were explored in some of the studies. These studies found that several factors were associated with the impact of ASD on parents, including the severity of ASD, social support, economic status, maternal education, financial hardship, marital status, parental age, and the gender of the child (Al-Kandari et al., 2017 ; Alnazly and Abojedi, 2019 ; Alshekaili et al., 2019 ; Al-Masa'deh et al., 2020 ; Alshahrani and Algashmari, 2021 ; Khusaifan and El Keshky, 2021 ).

Coping Strategies of Parents of Children With ASD

Limited studies have investigated coping strategies used by parents raising children with ASD in Arab countries. Religious coping was the most common coping strategy found in some of these studies (Dababnah and Parish, 2013 ; Al-Kandari et al., 2017 ; Amireh, 2019 ; Khusaifan and El Keshky, 2021 ). Other strategies used were acceptance, positive reframing, withdrawal from the community, denial of the ASD diagnosis, increasing social interactions, and accessing information.

Resilience in Parents of Children With ASD

Only two studies examined the psychological resilience of parents. Dababnah and Parish ( 2013 ) reported that Palestinian parents in the West Bank demonstrated remarkable resilience in raising children with ASD. Furthermore, Alshahrani and Algashmari ( 2021 ) found high levels of resilience among parents and caregivers of children with ASD in Saudi Arabia.

This systematic review was conducted to identify studies that addressed the impact of ASD on parents in Arab countries. The included studies were reviewed in terms of participants, general characteristics, methodology used, and the main findings. This review found that the impact of ASD on parents and caregivers has only recently gained traction among researchers in some Arab countries. Approximately 80% of the studies included in this review were conducted in Saudi Arabia, Jordan, Egypt, Kuwait, and Bahrain. Most of these studies used cross-sectional study designs and included non-random samples. Furthermore, the study participants of the included studies comprised more mothers than fathers. Moreover, most of the included studies did not distinguish between the different subtypes of ASD.

The majority of studies found that ASD has a significant negative impact on the mental health and wellbeing of Arab parents. This finding is consistent with previous studies conducted in several countries, suggesting that parents of children with ASD experience significant levels of stress, depression, and anxiety (Loukisas and Papoudi, 2016 ; Reddy et al., 2019 ; Papadopoulos, 2021 ). Consistent with previous research, this review also showed that parents of children with ASD in Arab countries have poorer QoL (Lee et al., 2008 ; Vasilopoulou and Nisbet, 2016 ). Thus, parents of children with ASD face an increased risk of developing psychological disorders in contrast to parents of both typically developing children and children with other developmental disorders (Karst and Van Hecke, 2012 ; Schnabel et al., 2020 ; Papadopoulos, 2021 ). In addition, several studies found that these parents reported a high caregiver burden (e.g., Estes et al., 2013 ; Picardi et al., 2018 ).

Studies exploring the factors associated with stress in parents and caregivers of children with ASD are limited in Arab countries. These factors include the severity of ASD, social support, economic status, maternal education, financial hardship, marital status, parental age, and the gender of the child. Overall, these results are consistent with literature indicating a relationship between the impact of ASD on parents and various characteristics among the child and extended family (Karst and Van Hecke, 2012 ; Rivard et al., 2014 ; Iadarola et al., 2019 ).

Furthermore, studies addressing the coping strategies used by parents raising children with ASD are even more limited in Arab countries. Although limited, these studies found that the most common coping strategy used by parents was religious coping followed by acceptance, positive reframing, withdrawal from the community, denial of the ASD diagnosis, increasing social interactions, and accessing information. Moreover, two studies found high levels of resilience in parents and caregivers. However, since the studies are limited, these results should be interpreted with caution. Moreover, most of the studies used self-report questionnaires and lacked a qualitative measurement. As a result, socially desirable responses may have been provided by the parents and caregivers, underscoring the limitations of the data collection methods used.

The findings of this systematic review have several important implications for future research in Arab countries. Parents that have a child with ASD are severely impacted (Picardi et al., 2018 ). Despite the evidence provided by published studies about the impact of ASD on parents in Arab countries, there are still several knowledge gaps. For example, studies identified in this review provided minimal or no information about the impact of ASD on parental self-efficacy, physical health problems, marital relationships, or family socialization.

Furthermore, further research is required to underscore the difference in the experience of the burden associated with raising a child with ASD between mothers and fathers. While several studies have indicated that mothers of children with ASD suffer from increased levels of mental health challenges and burdens compared to fathers, some studies have yielded mixed results (Picardi et al., 2018 ; Al Khateeb et al., 2019 ; Rudelli et al., 2021 ). Thus, further research is required to enhance the understanding of the different challenges experienced by parents raising children with ASD in Arab countries, particularly qualitative studies (Leko et al., 2021 ).

Moreover, the majority of the studies included in this review used small non-random samples based on a limited number of countries. Consequently, this limited the generalizability of the findings to all parents in the Arab region. Thus, future research including larger random samples is required.

Limitations

Several limitations should be considered when interpreting the findings of the current review. First, only studies published in English in peer-reviewed journals were included in this review. The researchers excluded literature published in the Arabic language due to the severe lack of Arabic electronic databases. Furthermore, conducting a comprehensive manual search would have been a formidable task (Alkhateeb and Alhadidi, 2019 ). As a result, the included studies may not be representative of all the evidence (Morrison et al., 2012 ). Second, narrow search parameters were applied resulting in the exclusion of other potential sources of information such as conference papers and theses or dissertations that could uncover other relevant literature. Third, this review did not include a critical appraisal of the identified studies. Although the review was confined to studies published in peer-reviewed journals (71% of which had an Impact Factor >1.0), this does not necessarily guarantee the methodological quality of reviewed studies. Therefore, some of the included studies may be of low quality, warranting further research. Despite these limitations, this systematic review facilitates the understanding of the impact of ASD on parents in Arab countries.

This systematic review summarized the results of studies underscoring the impact of ASD on parents in Arab countries. Twenty-four studies met inclusion criteria and most of the included studies were quantitative studies that were conducted within the last 5 years in Saudi Arabia, Jordan, Egypt, Kuwait, and Bahrain. Furthermore, most of the identified studies found that ASD has a significant negative impact on the mental health and wellbeing of Arab parents. Moreover, significant gaps were found in the evidence base, including research on coping strategies and interventions aimed at reducing stress and burden among parents and caregivers. However, this review contributes valuable insights for future studies on parents of children with ASD in Arab countries.

Data Availability Statement

Author contributions.

JA conceptualized the manuscript and research questions, performed the initial article search, and reviewed all articles identified during the search. MH and WM participated in the acquisition of data, analysis, and manuscript drafting. All authors read and approved the final manuscript.

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.

Publisher's Note

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.

Acknowledgments

We would like to thank Editage ( www.editage.com ) for English language editing.

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Identification, Evaluation, and Management of Children With Autism Spectrum Disorder

Collaborators.

• COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS : Dennis Z Kuo ,  Susan Apkon ,  Lynn F Davidson ,  Kathryn A Ellerbeck ,  Jessica E A Foster ,  Garey H Noritz ,  Mary O'Connor Leppert ,  Barbara S Saunders ,  Christopher Stille ,  Larry Yin ,  Carol C Weitzman ,  David Omer Childers Jr ,  Jack M Levine ,  Ada Myriam Peralta-Carcelen ,  Jennifer K Poon ,  Peter J Smith ,  Nathan Jon Blum ,  John Ichiro Takayama ,  Rebecca Baum ,  Robert G Voigt ,  Carolyn Bridgemohan

Affiliations

• 1 Golisano Children's Hospital, University of Rochester, Rochester, New York; [email protected].
• 2 Children's Hospital of Philadelphia, Philadelphia, Pennsylvania; and.
• 3 Geisinger Autism & Developmental Medicine Institute, Danville, Pennsylvania.
• PMID: 31843864
• DOI: 10.1542/peds.2019-3447

Autism spectrum disorder (ASD) is a common neurodevelopmental disorder with reported prevalence in the United States of 1 in 59 children (approximately 1.7%). Core deficits are identified in 2 domains: social communication/interaction and restrictive, repetitive patterns of behavior. Children and youth with ASD have service needs in behavioral, educational, health, leisure, family support, and other areas. Standardized screening for ASD at 18 and 24 months of age with ongoing developmental surveillance continues to be recommended in primary care (although it may be performed in other settings), because ASD is common, can be diagnosed as young as 18 months of age, and has evidenced-based interventions that may improve function. More accurate and culturally sensitive screening approaches are needed. Primary care providers should be familiar with the diagnostic criteria for ASD, appropriate etiologic evaluation, and co-occurring medical and behavioral conditions (such as disorders of sleep and feeding, gastrointestinal tract symptoms, obesity, seizures, attention-deficit/hyperactivity disorder, anxiety, and wandering) that affect the child's function and quality of life. There is an increasing evidence base to support behavioral and other interventions to address specific skills and symptoms. Shared decision making calls for collaboration with families in evaluation and choice of interventions. This single clinical report updates the 2007 American Academy of Pediatrics clinical reports on the evaluation and treatment of ASD in one publication with an online table of contents and section view available through the American Academy of Pediatrics Gateway to help the reader identify topic areas within the report.

Copyright © 2020 by the American Academy of Pediatrics.

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Conflict of interest statement

POTENTIAL CONFLICT OF INTEREST: MeMix LLC is a company that makes an application (for phones). Dr Levy is on the advisory board for the application’s development. This application is being developed to assist in nutritional and dietary management of children with autism. Dr Levy has not received any money yet from this company. This application is the focus of a National Institutes of Health R21 grant, for which Dr Levy is funded for ∼2% of her salary. Once it is studied and marketed (if appropriate), Dr Levy will (possibly in the future) earn some money. Her years of relationship with the company are 2015 to the present. Dr Hyman has a relationship with Roche. Dr Hyman is the site principal investigator of a clinical trial of a novel agent being tested to promote social function in patients with autism. The University of Rochester (Dr Hyman’s institution) was 1 of >40 sites and had 2 study participants in 2018. University of Rochester will be leaving the trial in 2019 (withdrawal submitted) because of staffing, and that reimbursement for staff time does not cover the cost of participation. Funding was for the staff to complete the assessments required for the clinical trial. Dr Hyman got no personal reimbursement from the company; the funding was for staff time for recruitment and assessment and clinical research center support for the trial.

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• Published: 10 June 2024

New advances in the diagnosis and treatment of autism spectrum disorders

• Lei Qin 1 ,
• Haijiao Wang 2 ,
• Wenjing Ning 1 ,
• Mengmeng Cui 1 &
• Qian Wang 3  

European Journal of Medical Research volume  29 , Article number:  322 ( 2024 ) Cite this article

431 Accesses

Metrics details

Autism spectrum disorders (ASD) are a group of neurodevelopmental disorders that affect individuals' social interactions, communication skills, and behavioral patterns, with significant individual differences and complex etiology. This article reviews the definition and characteristics of ASD, epidemiological profile, early research and diagnostic history, etiological studies, advances in diagnostic methods, therapeutic approaches and intervention strategies, social and educational integration, and future research directions. The highly heritable nature of ASD, the role of environmental factors, genetic–environmental interactions, and the need for individualized, integrated, and technology-driven treatment strategies are emphasized. Also discussed is the interaction of social policy with ASD research and the outlook for future research and treatment, including the promise of precision medicine and emerging biotechnology applications. The paper points out that despite the remarkable progress that has been made, there are still many challenges to the comprehensive understanding and effective treatment of ASD, and interdisciplinary and cross-cultural research and global collaboration are needed to further deepen the understanding of ASD and improve the quality of life of patients.

Autism spectrum disorders (ASD) are a broad group of neurodevelopmental disorders that affect an individual's social interactions, communication skills, and behavioral patterns [ 1 , 2 ]. The characteristics of ASD vary significantly between individuals, from mild social impairments to severe communication and behavioral problems, a diversity that reflects the use of the term “spectrum” [ 3 ]. Although the exact causes of ASD are not fully understood, research suggests that both genetic and environmental factors play a key role in its development [ 4 ].

Characteristics of ASD

Difficulties in social interaction.

Individuals with ASD often exhibit significant difficulties in social interactions. These difficulties may include difficulty understanding the feelings and intentions of others, maintaining eye contact and facial expressions, and adapting to social norms and expectations. Individuals with ASD may experience challenges in establishing and maintaining friendships, they may not understand the two-way nature of social interactions, or they may feel uncomfortable sharing interests and activities [ 5 ].

Communication disorders

Communication deficits are another core feature of ASD. This may manifest itself in delays in language development, including delays in uttering first words or simple sentences. Some individuals with ASD may not use language to communicate at all. Even among individuals with ASD who have normal language skills, they may have difficulty using language in conversations to communicate thoughts, feelings, or needs. In addition, nonverbal communication, such as the understanding and use of body language and facial expressions, may also be affected [ 6 ].

Repetitive behaviors and interests

Individuals with ASD often display restricted, repetitive patterns of behavior and interests. These may include a strong fixation on specific topics or activities, repetitive body movements (e.g., rocking, clapping), and an overreliance on daily routines. These repetitive behaviors are sometimes seen as a way of self-soothing or as an attempt to control an environment that otherwise feels unpredictable and overwhelming to them [ 7 ].

Sensory sensitivity

Many individuals with ASD have abnormalities in sensory processing and may have very strong or delayed responses to sound, light, touch, taste or odor. For example, some individuals with ASD may find background noises in their everyday environment unusually harsh, or they may not notice pain or other bodily sensations [ 8 ].

Epidemiologic profile of ASD

According to the World Health Organization (WHO), the average prevalence of ASD among children globally is approximately 1% [ 9 ]. However, this figure varies significantly between regions and countries. For example, the Centers for Disease Control and Prevention (CDC) reports that the prevalence of ASD among 8-year-olds in the U.S. is 1 to 54. ASD is significantly more prevalent in males than females, at a ratio of approximately 4:1 [ 10 ]. This gender difference may reflect differences in genetic susceptibility and/or gender bias in the diagnostic process. Early diagnosis is key to improving developmental outcomes for children with ASD. Despite this, many children are not diagnosed by age 3. The CDC reports that most children are first evaluated for ASD by age 4, but diagnosis may occur later. Research suggests that ASD is highly heritable, but multiple genetic variants are associated with disease risk and environmental factors also play a role [ 11 ]. For example, there is an increased risk of ASD in preterm and low birth weight infants. Socioeconomic factors influence ASD diagnosis and treatment access. Families of lower socioeconomic status may face greater challenges, including barriers to accessing early intervention services, etc. ASD is a global public health problem, and its incidence, time to diagnosis, and treatment access are influenced by multiple factors [ 12 ]. Ongoing epidemiologic research and the advancement of a deeper understanding of ASD are critical to the development of effective prevention, diagnosis, and interventions.

Historical background

Early history of research and diagnosis of asd.

The concept of ASD was first clearly defined in the 1940s, when a group of children exhibiting extreme self-isolation and lack of responsiveness to the environment was first described by American psychiatrist Leo Kanner [ 13 ]. Almost simultaneously, Austrian child psychologist Hans Asperger described a similar but higher level of functioning in a condition that came to be known as Asperger’s syndrome [ 14 ]. These two independent studies laid the foundation for the modern understanding of ASD. For the first few decades, ASD was considered extremely rare and was often confused with schizophrenia. Due to a lack of in-depth understanding of ASD, early diagnostic criteria were unclear and treatment was largely limited to behavioral interventions and psychotherapy. Over time, researchers began to pay more attention to the genetic and neurobiological underpinnings of ASD, thus contributing to a more comprehensive understanding of this complex condition. Since the 1990s, the diagnosis of ASD has risen significantly, as diagnostic criteria have continued to be refined and public awareness has increased. This period has also witnessed an increased awareness of the importance of early diagnosis and intervention for ASD, which has led to significant improvements in the prognosis and quality of life for many children and adults with ASD [ 15 ].

Evolution of research paradigms

The research paradigm for ASD has undergone a remarkable evolution since the mid-twentieth century, a process that reflects a deepening of the understanding of ASD as well as advances in scientific research methods [ 16 ]. In the early stages, ASD research focused on behavioral observations and psychoanalysis, when ASD was often mistaken for an emotional disorder due to an indifferent mother. During this period, understanding of ASD was relatively limited and treatments focused primarily on psychotherapy and behavior modification. Into the second half of the twentieth century, with advances in genetics and neuroscience, researchers began to explore the biological basis of ASD. This marked a shift from a psychosocial to a biomedical model, and the focus of research gradually shifted to genetic factors and abnormalities in brain structure and function. Through a large number of family and twin studies, scientists found that ASD has a high genetic predisposition, while neuroimaging studies revealed the specificity of brain development in ASD patients. In the twenty-first century, with the application of bioinformatics and high-throughput gene sequencing technology, the study of ASD has entered a new stage [ 17 ]. Researchers have not only been able to identify specific genetic variants associated with ASD, but have also begun to explore the interaction between environmental factors and genetic susceptibility. In addition, the adoption of interdisciplinary research approaches, such as combining neuroscience, genetics, psychology, and computational modeling, has provided new perspectives for understanding the complexity of ASD.

Recently, the concepts of precision medicine and personalized treatment strategies have been introduced to the study of ASD, aiming to develop customized intervention programs based on each patient’s genetic background and symptom profile. With advances in technology and improved methods of data analysis, future research on ASD is expected to reveal more knowledge about its pathomechanisms and provide more effective support and treatment for patients with ASD.

Etiologic studies

Genetic factors, monogenic genetic cases.

The etiology of ASD is multifactorial, involving a complex interaction of genetic and environmental factors. Although most cases of ASD are thought to be the result of polygenic interactions, there are some cases that are directly associated with variations in a single gene, and these are referred to as monogenic genetic cases. Monogenic genetic cases provide an important window into understanding the genetic basis of ASD, although they represent a relatively small proportion of all ASD cases [ 18 ]. A number of specific genetic syndromes, such as fragile X syndrome, tuberous sclerosis, 15q11-q13 duplication syndrome, and Rett syndrome, have been found to be associated with a higher risk of ASD. These conditions, often caused by mutations or abnormalities in a single gene, can lead to significant differences in brain development and function, thereby increasing the probability of an ASD phenotype. Fragile X syndrome is one of the most common forms of inherited intellectual disability and the single-gene disorder known to be most strongly associated with ASD. It is caused by a repeat expansion on the FMR1 gene [ 19 ]. Tuberous sclerosis (TSC) is an inherited disorder that affects multiple systems and is caused by mutations in the TSC1 or TSC2 genes, and the prevalence of ASD is higher in patients with TSC. 15q11-q13 duplication syndrome (Dupuy 15q syndrome) involves a region of chromosome 15, the duplication of which is associated with an increased risk of ASD [ 20 ]. Rett syndrome, which predominantly affects females, is caused by mutations in the MECP2 gene, and patients often exhibit some of the features of ASD, such as impaired social interactions [ 21 ]. The association of these classical candidate genes with ASD is summarized in Table  1 .

The discovery of these monogenic genetic cases is not only crucial for understanding the genetic mechanisms of ASD, but also potentially valuable for the development of interventional and therapeutic strategies targeting specific genetic variants. However, even in these cases, the expression of the genetic variants showed a degree of heterogeneity, suggesting that the diversity of phenotypic features and clinical manifestations, even in monogenic genetic cases, may be influenced by other genetic and environmental factors. Therefore, an in-depth study of these conditions will not only improve our understanding of the genetic basis of ASD, but also provide clues for the development of more personalized therapeutic strategies.

Multigene interactions

The development of ASD is widely recognized as a result of the interaction of genetic and environmental factors, with polygenic interactions occupying a central position in the genetic background of the disease. Unlike monogenic cases, polygenic interactions involve variants or polymorphisms in multiple genes that together increase the risk of ASD. These genetic variants may contribute a smaller effect in each individual, but when acting together they can significantly increase the probability of ASD development [ 30 ]. Current research suggests that no single gene can explain all cases of ASD. Instead, hundreds of genetic loci have been identified that are associated with an increased risk of ASD. These genes are often involved in key processes such as brain development, neuronal signaling, and intercellular communication, suggesting that ASD involves extensive regulation of brain function and structure. The complexity of multigene interactions means that genetic studies of ASD require large-scale genomic data and sophisticated statistical methods to reveal those genomic variants that increase risk.

Meta-analyses of large-sample genome-wide association studies (GWAS) have identified several consistently replicated ASD risk gene loci, such as those in the chromosomal regions 3p21, 5p14, 7q35, and 20p12. These loci contain genes like CNTN4, CNTNAP2, and NRXN1, which play crucial roles in neurodevelopment and synaptic function, particularly in processes such as synaptic adhesion and neurotransmission. These findings provide a more robust understanding of the genetic architecture of ASD and highlight the importance of integrating genetic findings with functional studies to advance our understanding of the disorder. They also have implications for future research, such as the development of personalized diagnostic and therapeutic strategies based on an individual's genetic profile. Through genome-wide association studies (GWAS) and other genomic approaches, scientists are gradually unraveling the genetic landscape of this complex disease. Understanding the impact of multiple gene interactions on ASD not only helps us understand its genetic basis, but also opens up the possibility of developing personalized treatment and intervention strategies [ 31 ].

Environmental factors

Maternal exposure.

Exposure during pregnancy refers to a mother’s exposure to specific environmental factors or substances during fetal development, which may increase the child's risk of developing ASD in the future. These exposures include certain prescription medications (e.g., anti-seizure medications and opioids), environmental pollutants (e.g., heavy metals and air pollutants), infections (e.g., rubella and influenza viruses), and poor nutrition or deficiencies in specific nutrients (e.g., folic acid). These factors may increase the risk of ASD by affecting fetal brain development and the maturation process of the nervous system. Understanding the effects of exposure during pregnancy can help to take preventive measures to reduce the incidence of ASDs [ 32 ].

Effects of early developmental stages

The early developmental stages of ASD are influenced by a variety of factors that include genetic predisposition, environmental exposures, and early life experiences. During a child's early development, the brain experiences rapid growth and the formation of neural networks. Any disruption during this critical period may interfere with the proper development of brain structure and function, thereby increasing the risk of ASD. For example, very early lack of social interaction, delayed language development or abnormal sensory processing may be early signs of ASD. These developmental abnormalities reflect difficulties in the brain’s nervous system in processing information, making connections and adapting to environmental changes. Early identification and intervention are essential to promote optimal development in children with ASD [ 33 ].

Genetic–environmental interactions

The genetic–environmental interactions are summarized in Fig.  1 . ASD develops as a result of the interaction between genetic and environmental factors, and this interaction reflects the complexity of the combination of genetic background and external environmental factors that influence ASD risk. Specifically, certain genetic susceptibilities may be activated in response to environmental triggers, leading to the development of ASD. For example, genetic variants may make individuals more sensitive to certain environmental exposures (e.g., substance use during pregnancy, environmental pollutants, or maternal nutritional status), which together may increase the risk of ASD by acting on key brain developmental stages [ 34 ]. This complex genetic–environmental interaction underscores the need to understand multifactorial etiological models of ASD and the importance of developing personalized intervention strategies.

Advances in diagnostic methods

Traditional diagnostic methods.

Traditional diagnostic methods for ASD rely heavily on detailed assessments of behavior and developmental history. These assessments are usually conducted by specialized health care providers such as pediatricians, neuropsychologists, or psychiatrists. The diagnostic process encompasses direct observation of the child as well as in-depth interviews with parents or caregivers to gather information about the child's social interactions, communication skills, and behavioral patterns [ 35 ]. Diagnostic tools include, but are not limited to, the Childhood Autism Rating Scale (CARS), the Autism Diagnostic Observation Scale (ADOS), and the Autism Diagnostic Interview-Revised (ADI-R). These tools are designed to identify core symptoms of ASD, such as social communication deficits and repetitive behaviors or interests. In addition, the doctor may perform a series of developmental or cognitive assessments to rule out other conditions that may explain the child’s behavior, such as language disorders or other neurodevelopmental disorders [ 36 ]. While these traditional diagnostic methods are highly effective in recognizing ASD, they rely on subjective assessments and the experience of the professional, and therefore may have some degree of variability. In recent years, with a deeper understanding of ASDs, new diagnostic techniques and methods are being developed and adopted to improve diagnostic accuracy and efficiency.

Latest diagnostic techniques and tools

Genetic testing.

Genetic testing for ASD is a method of identifying risks associated with ASD by analyzing genetic variants in an individual's DNA. This testing looks for specific genetic variants that have been linked by scientific research to the development of ASD. Although the genetic background of ASD is extremely complex, involving multiple genes and the interaction of genes with environmental factors, variants in specific genes have been identified as having a significant impact on ASD risk [ 37 ]. For example, variants in the SHANK3 gene are associated with Phelan–McDermid syndrome, and patients with this syndrome often exhibit ASD features. Variants in the FMR1 gene are responsible for fragile X syndrome, which is the most common single-gene cause of ASD known to be associated with ASD. Mutations in the MECP2 gene have been associated with Rett syndrome, and patients with Rett syndrome often exhibit ASD condition. In addition, variants in the NRXN1 and NLGN3/4 genes have been found to increase the risk of ASD [ 38 ]. Genetic testing can help provide more precise diagnostic information, and in those cases of ASD where the cause is unknown, it may even reveal the underlying genetic cause. This will not only help to understand the genetic mechanisms of ASD, but also provide more targeted intervention and support strategies for patients and families.

Neuroimaging

Neuroimaging techniques in the study of ASD provide a non-invasive way to explore changes in brain structure and function, helping scientists better understand the biological basis of ASD. These techniques include functional magnetic resonance imaging (fMRI), structural magnetic resonance imaging (sMRI), diffusion tensor imaging (DTI), and positron emission tomography (PET). Through these neuroimaging techniques, researchers are able to observe structural and functional differences in specific regions and networks of the brain in individuals with ASD [ 39 ]. For example, fMRI can reveal patterns of brain activity when performing specific tasks, helping to understand the impairments in social, language, and cognitive functioning in individuals with ASD. dTI focuses on the microstructure of the brain’s white matter, revealing the connections of bundles of nerve fibers, which can help to study neural connectivity issues in ASD. PET scans, on the other hand, are able to assess the activity of specific chemicals in the brain, providing clues to study the neurochemical basis of ASD [ 40 ]. With these advanced neuroimaging techniques, researchers will not only be able to delve deeper into the neurodevelopmental abnormalities of ASD, but also identify possible novel therapeutic targets that can provide a scientific basis for developing more effective interventions. However, while these techniques provide valuable perspectives in understanding ASD, a complete understanding of the complexity of the brain remains a challenge for future research.

Early screening methods

Recently, the field of early screening for ASD has witnessed the application of a number of innovative techniques designed to improve the accuracy and convenience of screening. One notable new approach is the use of artificial intelligence (AI) and machine learning techniques to analyze children's behavioral videos and biomarkers. By training algorithms to recognize specific behavioral patterns and physiological signals associated with ASD, these technologies can help physicians and researchers identify potential ASD symptoms earlier [ 41 ]. Another area of innovation is eye-tracking technology, which assesses children’s social and cognitive development by analyzing their eye movement patterns when viewing pictures or videos. Studies have shown that the eye movement patterns of children with ASD while viewing social scenes differ from those of typically developing children, providing a non-invasive window for early screening [ 42 ]. The application of these state-of-the-art technologies not only improves the efficiency and accessibility of early screening, but also provides new perspectives for understanding the complexity and individual differences in ASD [ 43 ]. Although these approaches are still in the research and development stage, they demonstrate the great potential of utilizing technological advances to improve the process of ASD screening and diagnosis. With further validation and refinement of these techniques, it is expected that they will make a significant contribution to the early identification and intervention of ASD in the future.

Treatment approaches and intervention strategies

Behavioral and educational interventions, applied behavior analysis (aba).

Applied behavior analysis (ABA) is an intervention approach based on the principles of behavioral psychology that is widely used in the treatment of children with autism spectrum disorders (ASD). ABA works to understand and improve specific behaviors, particularly to enhance social, communication, academic skills, and daily living skills, while reducing maladaptive behaviors. It helps individuals learn new skills and behaviors by systematically applying reinforcement strategies that encourage and reward desired behaviors [ 44 ]. ABA therapy is highly individualized and customized to each child’s specific needs and abilities. Treatment planning begins with a detailed behavioral assessment to identify target behaviors and intervention strategies. Learned behaviors are then reinforced and cemented through one-on-one teaching sessions using positive reinforcement. ABA also emphasizes the importance of data, which is collected and analyzed on an ongoing basis by the therapist to monitor progress and adjust the treatment plan as necessary [ 45 ]. Research has shown that ABA is an effective way to improve social interactions, communication skills, and learning in children with ASD. Through early and consistent intervention, ABA can significantly improve the independence and overall quality of life of children with ASD. Although ABA treatment requires a commitment of time and resources, the long-term benefits it brings to children with ASD and their families are immeasurable.

Social skills training

Social skills training (SST) for children with autism spectrum disorders (ASD) is an intervention designed to improve their ability to interact socially in everyday life. This training focuses on teaching children with ASD the ability to understand social cues, establish effective communication skills, and develop friendships. Through SST, children learn how to recognize and interpret other people's facial expressions, body language, and social etiquette, which are essential for building positive relationships [ 46 ]. Social skills training typically includes a series of structured instructional activities such as role-playing, social stories, interactive group exercises, and peer modeling. These activities are designed to provide practice in real-world social situations in a supportive and interactive manner, helping children with ASD learn and practice new skills in a safe environment [ 47 ]. In addition, SST can include teaching emotion management and conflict resolution skills to help children with ASD better understand and express their emotions and cope with challenges in social interactions. Through regular and consistent practice, children with ASD can improve their self-confidence, increase their social engagement, and ultimately improve their social competence and quality of life. SST has been shown to be significantly effective in enhancing social adjustment and interpersonal interactions in children with ASD [ 48 ].

Medical treatment

While there is no cure for ASD, certain medications can be used to manage specific symptoms associated with ASD, such as behavioral problems, attention deficits, anxiety, and mood swings that are common in individuals with autism. Medication is often used as part of a comprehensive intervention program designed to improve the quality of life and daily functioning of the patient [ 49 ]. Medications commonly used for ASD symptom management include antipsychotics, antidepressants, stimulants, and anxiolytics. For example, two antipsychotics, risperidone and aripiprazole, have been approved by the FDA for the treatment of stereotypic and aggressive behavior in children and adolescents with ASD. In addition, selective serotonin reuptake inhibitors (SSRIs) may be helpful in managing anxiety and depressive symptoms in individuals with ASD.

Importantly, medication needs to be closely monitored by a physician to ensure the effectiveness and safety of the medications, as they may have side effects. We have summarized the research evidence on the efficacy and safety of commonly used medications in ASD, including antipsychotics for treating irritability and aggression, antidepressants for co-occurring anxiety and depression, and other medications such as stimulants and melatonin. While these medications can be helpful in managing specific symptoms, they also carry potential side effects and risks, such as weight gain, metabolic disturbances, and behavioral activation. Therefore, a thorough diagnostic evaluation, individualized treatment planning, close monitoring, and regular follow-up are essential when considering pharmacotherapy for individuals with ASD. The decision to medicate should be based on an individualized assessment that takes into account the patient’s specific needs, the severity of symptoms, and possible side effects. At the same time, pharmacological treatments are often used in combination with non-pharmacological treatments such as behavioral interventions and educational support to achieve optimal therapeutic outcomes [ 50 ].

Biofeedback and neuromodulation

Biofeedback and neuromodulation are innovative approaches that have been explored in recent years in the treatment of ASD, aiming to reduce ASD symptoms by improving brain function. Biofeedback techniques enable individuals to learn how to control physiological processes that are not normally under conscious control, such as heart rate, muscle tension, and brainwave activity. Through real-time feedback, patients can learn how to regulate their physiology, resulting in improved concentration, reduced anxiety, and improved emotional regulation. Neuromodulation, specifically transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS), affects neural activity in the brain through external stimulation. tMS utilizes a magnetic field to affect neuronal activity in specific areas of the brain, while tDCS modulates neuronal excitability by applying a weak electrical current. These methods have been studied for improving social communication skills and reducing stereotypical behaviors in people with ASD [ 51 ].

Biofeedback helps individuals develop self-regulation skills by providing real-time feedback on physiological states, while neuromodulation techniques like TMS and tDCS modulate cortical excitability and neural plasticity in aberrant circuits implicated in ASD. Current research suggests potential benefits of these techniques in improving emotional regulation, social functioning, and cognitive performance, but mixed results highlight the need for larger, well-controlled trials to validate efficacy, safety, and optimal protocols. Despite challenges, these techniques show promise as adjunctive therapies in the comprehensive management of ASD, warranting further research to guide their translation into clinical practice. Although biofeedback and neuromodulation show potential in the treatment of ASD, research on these techniques is currently in its infancy. More clinical trials and studies are needed to evaluate their effectiveness, safety, and long-term effects and to determine which patients may benefit from these interventions. Nevertheless, as non-pharmacologic treatments, they offer promising complementary options to the comprehensive treatment of ASD.

Emerging intervention approaches

Technology-assisted interventions.

Technology-assisted interventions have become an important development in the field of ASD treatment in recent years, providing new ways for children with ASD to learn and communicate. These interventions utilize computers, tablets, smartphone apps, and virtual reality technology to design a range of interactive learning tools and games designed to improve social skills, communication, and cognitive functioning in children with ASD [ 52 ]. A key advantage of technology-assisted interventions is their ability to provide highly personalized learning experiences. Software and applications can be adapted to a child's specific needs and interests, ensuring that learning content is both engaging and appropriate to the individual's developmental level. In addition, the feedback provided by technology is often immediate and consistent, helping children with ASD to better understand and process information. The use of virtual reality technology, by simulating social situations, provides a safe and controlled environment for children with ASD to practice social interaction and problem-solving skills, which is often difficult to achieve in traditional educational and therapeutic settings [ 53 ]. Although technology-assisted interventions have demonstrated great potential, research on their long-term effects and optimal implementation is still ongoing. To maximize the benefits of these tools, it is often recommended that technology-assisted interventions be used in conjunction with other therapeutic approaches to provide a comprehensive intervention program.

Diet and nutrition interventions

Dietary and nutritional interventions have received increasing attention in the treatment of ASD, based on the observed potential link between nutritional imbalances and ASD symptoms. This intervention approach aims to improve the behavioral performance and overall health of children with ASD by optimizing their diet. Specific strategies include restricting certain foods that may exacerbate symptoms, such as gluten and lactose, as well as increasing intake of foods rich in essential nutrients to support brain development and function [ 54 ]. Several studies support the potential benefits of specific dietary interventions, such as implementing a gluten-free lactose-free (GFCF) diet, which may help improve behavioral and digestive symptoms in some children with ASD. In addition, supplementation with omega-3 fatty acids, vitamins, and minerals (e.g., magnesium and zinc) have been proposed as potentially beneficial strategies to support neurologic health and alleviate ASD-related symptoms [ 55 ]. However, the effectiveness of dietary and nutritional interventions may vary by individual and more scientific research is needed to gain a deeper understanding of their long-term effects on children with ASD. Before implementing any dietary intervention, it is recommended to consult with a physician or nutritional expert to ensure that the individual needs of the child are met and to avoid malnutrition. In combination, dietary and nutritional interventions can be used as part of a comprehensive treatment plan for ASD, complementing traditional behavioral and educational interventions.

Social and educational integration

Educational integration of children with asd.

Educational integration of children with ASD is an inclusive educational practice that seeks to integrate children with ASD into the mainstream educational system to learn and grow with their typically developing peers. This integration model emphasizes individualized learning plans and adaptive teaching strategies to meet the unique needs of children with ASD while promoting their social inclusion and emotional development. Through educational integration, children with ASD are provided with opportunities to interact with other children, which is essential for them to learn social skills, enhance their communication abilities, and improve their ability to adapt to society. To support the successful integration of children with ASD, schools often provide special education services such as speech and language therapy, occupational therapy, and behavioral interventions, which take place in classroom settings to ensure their academic and social progress. Educational inclusion is not only beneficial for children with ASD, but it also helps to foster a sense of inclusion and diversity among their peers. By learning and playing together, all children learn to respect and understand differences, laying the foundation for a more inclusive society. However, effective integrated education requires close collaboration among teachers, parents and professionals, as well as the availability of appropriate resources and support systems [ 56 ].

Social integration and employment of adults with ASD

The social integration and employment of adults with ASD is a current focus of attention in ASD research and social services. For many adults with ASD, social integration challenges include establishing stable relationships, participating in community activities, and finding and keeping a job. Although adults with ASD may have unique skills and interests in specific areas, social communication deficits and fixed patterns of behavior may make it difficult for them in traditional work settings. In recent years, more and more organizations and businesses have begun to recognize the value of diversity and inclusion and are working to create work environments that are better suited for adults with ASD. This includes providing flexible work arrangements, clear communication guidelines, and individualized support measures such as workplace co-worker support and professional career counseling. In addition, social service programs and non-profit organizations offer training and job readiness programs specifically designed for adults with ASD to help them develop necessary vocational skills and social competencies. Through these efforts, adults with ASD will not only be able to find jobs that meet their interests and abilities, but also find a place for themselves in society, enhancing their independence and life satisfaction. However, the realization of this goal requires sustained social awareness-raising and the construction of an ASD-friendly environment [ 57 ].

Future research directions

Application of precision medicine in asd treatment.

The application of precision medicine in the treatment of ASD represents a paradigm of a personalized treatment strategy that aims to tailor the treatment plan to each patient's genetic information, biomarkers, history of environmental exposure, and lifestyle factors. The philosophy behind this approach is that, although ASD is classified as a spectrum, each patient's etiology, symptoms, and their severity are different, and therefore treatment should be highly individualized [ 58 , 59 ]. By fully sequencing a patient's genome, scientists and physicians can identify specific genetic variants that may affect ASD symptoms, allowing them to develop targeted treatments. For example, if a particular ASD patient's symptoms are linked to an abnormality in a specific metabolic pathway, that pathway could be modulated through dietary adjustments, nutritional supplements, or specific medications with a view to improving symptoms. In addition, precision medicine involves the consideration of environmental factors and personal behavior to ensure that treatment options are not only scientifically effective, but also appropriate to the patient's lifestyle. Although precision medicine is still in its early stages in the field of ASD, it offers great potential for delivering more personalized and effective treatment regimens, which are expected to significantly improve the quality of life of people with ASD [ 60 ].

Prospects for emerging biotechnologies

Emerging biotechnologies in the field of ASD, such as gene editing, stem cell therapies, and biomarker development, are opening up new possibilities for treating and understanding ASD. Gene editing technologies, particularly the CRISPR-Cas9 system, provide researchers with the means to precisely modify genetic variants associated with ASD, promising to reveal how specific genetic variants affect brain development and function, thereby providing clues for the development of targeted therapies [ 61 ]. Stem cell therapies utilize a patient's own induced pluripotent stem cells (iPSCs) to study the pathomechanisms of ASD by mimicking the neurodevelopmental process in vitro, as well as exploring potential cellular alternative treatments. In addition, the discovery of biomarkers facilitates early diagnosis and monitoring of disease progression, making personalized treatment possible [ 62 ]. In addition, induced pluripotent stem cell (iPSC)-derived brain organoids from ASD patients have emerged as a powerful tool for studying the neurodevelopmental abnormalities associated with ASD. These 3D, self-organizing models recapitulate key features of human brain development in vitro, allowing researchers to investigate the cellular and molecular mechanisms underlying ASD pathogenesis. By comparing brain organoids derived from ASD patients with those from healthy controls, researchers can identify alterations in neuronal differentiation, migration, and connectivity that may contribute to the development of ASD. Moreover, patient-derived brain organoids provide a personalized platform for drug screening and testing, enabling the identification of targeted therapies that can be tailored to an individual's genetic background. This approach has the potential to revolutionize the development of precision medicine strategies for ASD, by providing a more accurate and relevant model system for investigating disease mechanisms and testing novel therapeutic interventions. As the field continues to advance, iPSC-derived brain organoids are expected to play an increasingly important role in unraveling the complex etiology of ASD and guiding the development of personalized treatment strategies [ 63 ]. The development of these technologies has not only improved our understanding of the complex etiology of ASD, but also provided more precise and effective treatment options for ASD patients. Although most of these emerging biotechnologies are still in the research phase, they bring hope and anticipation for the future of ASD treatment and management. As research progresses and technology matures, it is expected that these innovative approaches will bring substantial benefits to individuals with ASD and their families.

Interaction between social policy and ASD research

The interaction between social policy and ASD research is key to achieving better social inclusion and quality of life for individuals with ASD and their families. Effective social policies can provide the necessary financial support and legal framework for ASD research, promoting a deeper understanding of ASD and the development of new treatments. For example, policies can promote collaboration in interdisciplinary research, encourage the use of innovative technologies and methods, and support long-term follow-up studies. In addition, social policies play a crucial role in ensuring that ASD research results are translated into practical applications and that education, employment, and social services are provided to individuals with ASD. Through the development of inclusive education policies, employment assistance programs, and the provision of integrated social services, policies can help individuals with ASD realize their potential and better integrate into society. At the same time, advances in ASD research also provide a scientific basis for the development of more targeted and effective social policies, helping policymakers understand the needs of individuals with ASD and develop more precise support measures. Thus, there is a close interplay between social policy and ASD research, which together have contributed to the advancement of the understanding of ASD and coping strategies.

Limitations of the current research

Although significant progress has been made in ASD research, a number of key limitations remain. First, the etiology of ASD is extremely complex, involving genetic and environmental factors and their interactions, making it extremely challenging to identify specific etiologies and develop targeted treatment strategies. Second, the heterogeneity of ASD is reflected in the extreme variability of symptoms among patients, which makes it difficult to develop uniform diagnostic criteria and treatment approaches. In addition, most studies have focused on children, and adult patients with ASD have been relatively understudied, which limits the understanding of the full lifespan of ASD. In terms of research methodology, most current ASD research relies on small, short-term studies, which may affect the broad applicability of results and the assessment of long-term effectiveness. In addition, although advances in technology have provided new tools for ASD diagnosis and intervention, the popularization and application of these technologies still face economic and resource constraints. Finally, ASD research is unequal across the globe, with far more research conducted in resource-rich countries and regions than in resource-limited areas. This imbalance limits a comprehensive understanding of ASD in different cultural and social contexts. Therefore, to overcome these limitations, more interdisciplinary, cross-cultural, and long-term research, as well as global collaborations, are needed to deepen the understanding of ASD and improve the quality of life of individuals with ASD.

Perspectives on future research

The outlook for future prevention and treatment of ASD points in a more individualized, integrated, and technology-driven direction. With a deeper understanding of the genetic and environmental factors of ASD, it is expected that more targeted interventions and therapeutic strategies will be developed that will be based on an individual's specific genetic background and pathologic characteristics. The application of precision medicine is expected to improve treatment outcomes, reduce unwanted side effects, and optimize resource allocation. Meanwhile, technological advances, particularly artificial intelligence, machine learning, and virtual reality, are expected to revolutionize the way ASDs are diagnosed, monitored, and treated. These technologies are capable of delivering customized learning and treatment programs that enhance the acceptability and effectiveness of interventions. In addition, interdisciplinary research will be strengthened, and social policies and public health strategies will focus more on early screening and intervention, as well as increasing public awareness and understanding of ASD. Most importantly, the future of ASD prevention and treatment will place greater emphasis on the needs of patients and families, promote social integration and employment of patients, and improve their quality of life. As society's awareness of diversity and inclusion increases, individuals with ASD will receive more support and respect and enjoy fuller opportunities for social participation.

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Lei Qin, Wenjing Ning & Mengmeng Cui

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Haijiao Wang

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Qin, L., Wang, H., Ning, W. et al. New advances in the diagnosis and treatment of autism spectrum disorders. Eur J Med Res 29 , 322 (2024). https://doi.org/10.1186/s40001-024-01916-2

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Doing a PhD with Autism Spectrum Disorder (ASD)

Anecdotally I know that there are many PhD candidates out there with ASD: Autism spectrum disorder . I have quite a few family members and friends who are not neuro-typical, so I’m uncomfortable with the word ‘disorder’. As my nephew, who was diagnosed as being on the spectrum around age 7, puts it: “you say ASD like it’s a bad thing, when it’s just how I am”.

He’s totally right. ‘ Neurotypicals’ are sometimes blind to the unique skills and capabilities that people with ASD have. The world is built around neurotypical ways, which makes studying while being on the spectrum particularly hard. I often get asked about PhD strategies for people with ASD, but, despite experience living and working with people on the spectrum, I am no expert. I was happy when Kim sent in this post and I hope it might encourage others living with ASD to share their experience.

Kim Kemmis has spent the last ten years working full time and pursuing postgraduate study in the Department of History at the University of Sydney. He recently completed his PhD on the life and career of the Australian soprano Marie Collier. His interests include Australian cultural history and the history of sexuality, and is currently writing on opera as a social phenomenon in Australia.

When I started my PhD I knew there would be challenges. For people with Autism Spectrum Disorder (ASD) there’s a huge boulder blocking the road, stopping us from turning intention into action. The way we process information and respond to the world affects how we work and how we connect to others, and for the HDR student there are some particular difficulties.

If research were only sitting in the archive working on documents it would be the best of all possible worlds. I can focus on the detail and feel the brain fire up with new information and connections and ideas. Back in the university study space where the work is more varied I need routine and habit, working at regular times in a quiet, unchanging working place, with minimal environmental noise like air conditioning hum or banging doors, where people don’t constantly walk past your desk or change your computer settings or move your books around. You will know this place by the unicorns roaming outside. Hot-desking is a vicious variation on the hell of open-plan, where even neurotypicals suffer.

Even in optimal conditions my brain won’t do what I want it to. At my worst, is not a matter of diving-in but zeroing-in. The brain takes its own time to engage with the text I’m working on. It doesn’t connect with anything beyond the immediate phrase I’m looking at. I circle around the text, looking for a phrase to spring off the screen or to catch my attention, to coax the brain into comprehension. Every few minutes I have to give the brain a break, preferably by doing something work-related or tuning into my music rather than social media. But usually it’s five minutes on, fifteen off until I get back to where I was. Sometimes I have to drag the brain back, with the to-do list, or by breaking the task down so I can do it in baby steps—any structure I can use to keep moving in the right direction.

On good days form takes care of itself. On bad days syntax and sentence structure fail catastrophically. The brain switches off between phrases and jumps to something else; I grab at what I thought I was writing, but my thinking has moved on and the sentence is a series of non sequiturs. My advanced writing skills need conscious reinforcement, and I can’t see if I’m making sense until I finish the sentence.

But after three-quarters of an hour teasing out the phrases and connections I suddenly get into the zone. Words start flowing out through the fingers and the actual ‘writing’ happens, and I have some sentences, even paragraphs that I can come back to and polish.

Connecting with others is difficult; activities such as class participation and supervision are complicated, and you become estranged from many of the collegial experiences. In my undergraduate days I was criticised for not joining in the discussions, even though I was probably working the hardest of anyone: trying to establish what people what were saying, analyse it, draw conclusions, then find a way of verbalising them, while not being able to read the class dynamics. Now that happens in supervision meetings. I try to work out the nuances (‘What exactly does she mean by subjectivity ? Whose? Is that what I call subjectivity or is it something else?’), but there is no time to linger, and I have to hold the idea unresolved and try to pick up cues from the rest of the conversation. After twenty-minutes I run out of stamina, and I can’t express myself verbally. I have lost count of the follow-up emails starting, ‘I tried to say…’ or ‘I should have said…’, or even pretending ‘It’s occurred to me that…’ (NB I didn’t disclose my ASD to my supervisors: in retrospect, a big mistake.)

As a historian I have to interview people. It’s a misconception that people with ASD don’t have empathy. But using that empathy is exhausting, and so are the burdens of initiating and maintaining conversation, and the emails and phone calls required to keep the relationship going.

As a research student you have to make contact with peers and influencers and grow your network. That’s why we have conferences, which can be another circle of hell. You can stick with people you know and connect through their connections. But otherwise it’s cold calling, talking to people while pouring a coffee, using the pre-prepared starters, ‘What are you writing about?’, ‘How many years do you have to go?’, and the one-sentence, thirty-second or three-minute summaries of my research, formulated to avoid the full-immersion experience to which I have been known to subject people; all the while fighting the chaotic and exhausting coffeebreak noise, and the anxiety that as you lurch from sentence to sentence you will lose the thread or not be able to reply.

During papers I try not to be distracted by the rustling of pens scratching on poor quality notepaper, or the suspicion that the weird smells from the seats are possibly organic in origin. I enjoy the para-conference that Twitter provides; distilling the essence of a paper to 280 characters including the conference hashtag helps me engage, and the online interaction complements the more difficult physical socialising.

Presenting isn’t a problem. Once I’m at the lectern the technique kicks in and the anxiety starts to dissipate. But I stink without a script. Every word is prepared, even the impromptu remarks. Questions can be an adventure: remembering not to over-answer, monitoring the questioner’s expression to see if I have to ask ‘Am I answering your question or have I missed the point?’

Now I have finished my PhD I look forward to life as an Early Career Researcher and ask, ‘Does it get easier?’ No. But I have found ways of working that work for me—which is what the PhD is all about, for all of us.

Thanks for sharing your experience Kim! I’m wondering what you think – have you been diagnosed with ASD, or suspect you might have tendencies? What strategies do you have in place to cope with the challenges? Love to hear your ideas in the comments.

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Autism Spectrum Disorder (ASD)

ASD is a complex developmental disorder that affects how a person behaves, interacts with others, communicates, and learns. NICHD is one of many federal agencies and NIH Institutes working to understand ASD. NICHD supports and conducts research on what causes autism, how best to detect signs of autism, how best to treat autism and its symptoms, and other topics.

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Treatment of stress-induced exhaustion disorder has wrong focus, researcher suggests

by Uppsala University

A new thesis at Uppsala University questions the traditional view of stress-induced exhaustion disorder. A new model is proposed in its place that puts more focus on meaningfulness rather than recovery.

"There are no established evidence-based models for the psychological treatment of stress-induced exhaustion disorder. The concepts of 'recovery' and 'stress' are so widely accepted in our current era that it is difficult to examine them critically," says Jakob Clason van de Leur, a recently graduated doctoral student at the Department of Psychology at Uppsala University.

"It's easy to think that patients with stress-related exhaustion should prioritize rest and relaxation, but an overly one-sided focus on recovery can lead to a passive existence that it's easy to get stuck in and can instead become harmful over time."

He has been working with patients suffering from stress-related exhaustion for 10 years. In his thesis, he describes how traditional treatment can be limiting and tends to overlook important psychological and social aspects of this condition.

He has followed 915 patients with stress-related exhaustion who have participated in comprehensive rehabilitation programs, including medical, psychological, and physiotherapeutic methods, based on CBT. While the results are positive, he concludes that this approach is relatively ineffective overall.

"We shoot with everything we have, hoping to hit something, but we don't know what really helped. With so many people experiencing stress-related exhaustion, it becomes a problem that the standard treatment is so extensive. The treatments used to last up to one year when I started—now we are working on a 12-week digital program ," Clason van de Leur continues.

The shorter program is based on a new treatment model based on Acceptance and Commitment Therapy (ACT), in which stress-induced exhaustion disorder is seen as an existential crisis resulting from a lack of contact with meaningfulness. This may involve a patient's need to feel love, community, or a clearer work role.

A pilot study tested this new model by following 26 exhaustion patients through a 12-week online treatment program. The main part consists of a digital CBT treatment followed by chats with a psychologist and video check-ups. It also included support with returning to work.

"Despite being a small study, the results show similar effects to our previous six-month treatment program, using only a quarter of the clinical resources. This means that the treatment can be made available to more patients in the health care system," he explains.

He also thinks that the concept of stress needs to be discussed, as he believes the focus is often on the negative aspects of stress, despite stress being central to human development.

"Given the widespread incidence of mental ill health, we need better models to understand why people feel stressed. Our results indicate that treatment for stress-induced exhaustion disorder may be more effective with a different focus. While further studies are necessary, this may be a first small step towards a more theoretically grounded approach to clinically treating stress-related exhaustion," he concludes.

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