scholarly essays on autism

CONCEPTUAL ANALYSIS article

Research, clinical, and sociological aspects of autism.

• ESPA Research, Unit 133i Business Innovation Centre, The Robert Luff Laboratory, Education & Services for People With Autism Research, Sunderland, United Kingdom

The concept of autism continues to evolve. Not only have the central diagnostic criteria that define autism evolved but understanding of the label and how autism is viewed in research, clinical and sociological terms has also changed. Several key issues have emerged in relation to research, clinical and sociological aspects of autism. Shifts in research focus to encompass the massive heterogeneity covered under the label and appreciation that autism rarely exists in a diagnostic vacuum have brought about new questions and challenges. Diagnostic changes, increasing moves towards early diagnosis and intervention, and a greater appreciation of autism in girls and women and into adulthood and old age have similarly impacted on autism in the clinic. Discussions about autism in socio-political terms have also increased, as exemplified by the rise of ideas such as neurodiversity and an increasingly vocal dialogue with those diagnosed on the autism spectrum. Such changes are to be welcomed, but at the same time bring with them new challenges. Those changes also offer an insight into what might be further to come for the label of autism.

Introduction

Although there is still debate in some quarters about who first formally defined autism ( 1 ), most people accept that Kanner ( 2 ) should be credited as offering the first recognised description of the condition in the peer-reviewed scientific literature. The core diagnostic features covering issues in areas of social and communicative interaction alongside the presence of restricted and/or repetitive patterns of behaviour ( 3 ) described in his small caseload still remain central parts of the diagnosis today. The core issue of alterations in social cognition affecting emotion recognition and social attention ( 4 ) remain integral to the diagnosis of autism. The additional requirement for such behaviours to significantly impact on various areas of day-to-day functioning completes the diagnostic criteria.

From defining a relatively small group of people, the evolution of the diagnostic criteria for autism has gone hand-in-hand with a corresponding increase in the numbers of people being diagnosed. Prevalence figures that referred to 4.5 per 10,000 ( 5 ) in the 1960s have been replaced by newer estimates suggesting that 1 in 59 children (16 per 1,000) present with an autism spectrum disorder (ASD) in 2014 ( 6 ). The widening of the definition of autism has undoubtedly contributed to the significant increase in the numbers of people being diagnosed. It would be unacceptably speculative however, to define diagnostic changes as being the sole cause of the perceived prevalence increases.

Alongside the growth in numbers of people being diagnosed with autism so there have been changes in other areas related to autism; specifically those related to the research, clinical practice and sociological aspects of autism. Many of the changes have centred on key issues around the acceptance that autism is an extremely heterogeneous condition both in terms of presentation and also in relation to the genetic and biological complexity underlying its existence. That autism rarely exists in some sort of diagnostic vacuum is another part of the changes witnessed over the decades following the description of autism.

In this paper we highlight some of the more widely discussed changes in areas of research, clinical practice and sociological terms in relation to autism. We speculate on how such changes might also further develop the concept of autism in years to come.

Autism Research

As the definition of autism has subtly changed over the years, so ideas and trends in autism research have waxed and waned. The focus on psychology and behaviour as core descriptive features of autism has, in many respects, guided research and clinical views and opinions about the condition. Social cognition, including areas as diverse as social motivation, emotion recognition, social attention and social learning ( 4 ), remains a mainstay of research in this area. The rise of psychoanalysis and related ideas such as attachment theory in the early 20th century for example, played a huge role in the now discredited ideas that maternal bonding or cold parenting were a cause of autism. The seemingly implicit need for psychology to formulate theories has also no doubt played a role in perpetuating all-manner of different grand and unifying reasons on why autism comes about and the core nature of the condition.

As time moved on and science witnessed the rise of psychiatric genetics, where subtle changes to the genetic code were correlated with specific behavioural and psychiatric labels, so autism science also moved in the same direction. Scientific progress allowing the genetic code to be more easily and more cost-effectively read opened up a whole new scientific world in relation to autism and various other labels. It was within this area of genetic science that some particularly important discoveries were made: (a) for the vast majority of people, autism is not a single gene “disorder,” and (b) genetic polymorphisms whilst important, are not the only mechanism that can affect gene expression. Mirroring the role of genetics in other behavioural and psychiatric conditions ( 7 ), the picture that is emerging suggests that yes, there are genetic underpinnings to autism, but identifying such label-specific genetic issues is complicated and indeed, wide-ranging.

What such genetic studies also served to prove is that autism is heterogeneous. They complemented the wide-ranging behavioural profiles that are included under the diagnostic heading of autism. Profiles that ranged from those who are profoundly autistic and who require almost constant attention to meet their daily needs, to those who have jobs, families and are able to navigate the world [seemingly] with little or minimal support for much of the time.

It is this heterogeneity that is perhaps at the core of where autism is now from several different perspectives. A heterogeneity that not only relates to the presentation of the core traits of autism but also to how autism rarely manifests in a diagnostic vacuum ( 8 ). Several authors have talked about autism as part of a wider clinical picture ( 9 , 10 ) and how various behavioural/psychiatric/somatic issues seem to follow the diagnosis. Again, such a shift mirrors what is happening in other areas of science, such as the establishment of the Research Domain Criteria (RDoC) project ( 11 ). RDoC recognised that defining behavioural and psychiatric conditions on the basis of presented signs and symptoms does not necessarily “reflect” the relevant underlying processes and systems that might be important. It recognised that in order to deliver important clinical information about how and why a condition manifests, or the best strategies to intervene, research cannot just singularly start with the label. Science and clinical practice need more information rather than just a blanket descriptive label such as autism.

To talk about autism as a condition that also manifests various over-represented comorbid labels also asks a fundamental question: is the word “comorbidity” entirely accurate when referring to such labels? ( 12 ). Does such comorbidity instead represent something more fundamental to at least some presentations of autism or is it something that should be seen more transiently? Numerous conditions have been detailed to co-occur alongside autism. These include various behavioural and psychiatric diagnoses such as depression, anxiety and attention-deficit hyperactivity disorder (ADHD) ( 13 ). Other more somatic based conditions such as epilepsy ( 14 ), sleep ( 15 ) and various facets of gastrointestinal (GI) functioning ( 16 ) have also been discussed in the peer-reviewed science literature. Some of these co-occurring conditions have been described in the context of specific genetic conditions manifesting autism. Issues with the BCKDK (Branched Chain Ketoacid Dehydrogenase Kinase) gene for example, have been discussed in the context of autism, intellectual (learning) disability and epilepsy appearing together ( 17 ). Such a diagnostic combination is not unusual; autism often being described as the primary diagnosis with epilepsy and learning disability seen as “add-ons.” But should this be the case? Other evidence pointing to the possibility that epilepsy might under some circumstances beget autism ( 18 ) suggests that under some circumstances, such co-occurring conditions are so much more than just co-occurring or comorbid.

Other evidence for questioning the label “comorbid” comes from various animal models of autism. Accepting that one has to be particularly careful about extrapolating from animal models of autism to the more complex presentation of autism in humans ( 19 ), various models have suggested that autism may for some, fundamentally coexist with GI or bowel issues ( 20 , 21 ). Such observations have been noted across different animal models and cover important issues such as gut motility for example, that have been talked about in the context of autism ( 22 ).

Similarly, when one talks about the behavioural and psychiatric comorbidity in the context of autism, an analogous question arises about whether comorbidity is the right term. Anxiety and depression represent important research topics in the context of autism. Both issues have long been talked about in the context of autism ( 1 , 13 , 23 ) but only in recent years have their respective “links” to autism been more closely scrutinised.

Depression covers various different types of clinical presentations. Some research has suggested that in the context of autism, depressive illnesses such as bipolar disorder can present atypically ( 24 ). Combined with other study ( 25 ) suggesting that interventions targeting depressive symptoms might also impact on core autistic features, the possibility that autism and depression or depressive symptoms might be more closely linked than hitherto appreciated arises. Likewise with anxiety in mind, similar conclusions could be drawn from the existing research literature that anxiety may be a more central feature of autism. This on the basis of connections observed between traits of the two conditions ( 26 ) alongside shared features such as an intolerance of uncertainty ( 27 ) exerting an important effect.

A greater appreciation of the heterogeneity of autism and consideration of the myriad of other conditions that seem to be over-represented alongside autism pose serious problems to autism research. The use of “autism pure” where research participants are only included into studies on the basis of not having epilepsy or not possessing a diagnosis of ADHD or related condition pose a serious problem when it comes to the generalisation of research results to the wider population. Indeed, with the vast heterogeneity that encompasses autism, one has to question how, in the context of the current blanket diagnosis of autism or ASD, one could ever provide any universal answers about autism.

Autism in the Clinic

As mentioned previously, various subtle shifts in the criteria governing the diagnosis of autism have been witnessed down the years. Such changes have led to increased challenges for clinicians diagnosing autism from several different perspectives. One of the key challenges has come about as a function of the various expansions and contractions of what constitutes autism from a diagnostic point of view. This includes the adoption of autism as a spectrum disorder in more recent diagnostic texts.

The inclusion of Asperger syndrome in the DSM-IV and ICD-10 diagnostic schedules represented an expansion of the diagnostic criteria covering autism. Asperger syndrome defined by Hans Asperger ( 28 ) as autistic features without significant language impairment and with intelligence in the typical range, was included in the text for various different reasons. Allen Frances, one of the architects of the DSM-IV schedule, mentioned the importance of having a “ specific category to cover the substantial group of patients who failed to meet the stringent criteria for autistic disorder, but nonetheless had substantial distress or impairment from their stereotyped interests, eccentric behaviors, and interpersonal problems ” ( 29 ). It is now widely accepted that the inclusion of Asperger syndrome in diagnostic texts led to an increase in the number of autism diagnoses being given.

More recent revisions to the DSM criteria covering autism—DSM-5—included the removal of Asperger syndrome as a discrete diagnosis on the autism spectrum ( 30 ). Instead, a broader categorisation of autism spectrum disorder (ASD) was adopted. The reasons for the removal of Asperger syndrome from DSM-5 are complex. The removal has however generally been positively greeted as a function of on-going debates about whether there are/were important differences between autism and Asperger syndrome to require a distinction ( 31 ) alongside more recent revelations about the actions of Asperger during World War II ( 32 ). Studies comparing DSM-IV (and its smaller revisions) with DSM-5 have also hinted that the diagnostic differences between the schedules may well-impact on the numbers of people in receipt of a diagnosis ( 33 ).

Shifts in the diagnostic text covering autism represent only one challenge to autism in the clinical sense. Other important factors continue to complicate the practice of diagnosing autism. Another important issue is a greater realisation that although the presence of observable autistic features are a necessary requirement for a diagnosis of autism, such features are also apparent in various other clinical labels. Autistic features have been noted in a range of other conditions including schizophrenia ( 34 ), personality disorders ( 35 ) and eating disorders ( 36 ) for examples. Coupled with the increasingly important observation that autism rarely exists in a diagnostic vacuum, the clinical challenges to accurately diagnosing autism multiply as a result.

The additional suggestion of “behavioural profiles” within the autism spectrum adds to the complexity. Terms such as pathological demand avoidance (PDA) coined by Newson and colleagues ( 37 ) have started to enter some diagnostic processes, despite not yet being formally recognised in diagnostic texts. Including various autistic traits alongside features such as “resisting and avoiding the ordinary demands of life” and the “active use of various strategies to resist demands via social manipulation,” debate continues about the nature of PDA and its diagnostic value ( 38 ).

Early diagnosis and intervention for autism have also witnessed some important clinical changes over the years. Driven by an acceptance of the idea that earlier diagnosis means that early intervention can be put in place to “ameliorate” some of the more life-changing effects of autism, there has been a sharp focus on the ways and means of identifying autism early and/or highlighting those most at risk of a diagnosis. It's long been known that there is a heritable aspect to autism, whether in terms of traits or diagnosis ( 39 ). In this respect, preferential screening for autism in younger siblings when an older child has been diagnosed is not an uncommon clinical sentiment ( 40 ). Other work looking at possible “red flags” for autism, whether in behaviour ( 41 ) or in more physiological terms still continue to find popularity in both research and clinical terms.

But still however, autism continues to confound. As of yet, there are only limited reliable red flags to determine or preclude the future presence of autism ( 42 ). Early behavioural interventions for autism have not yet fulfilled the promise they are said to hold ( 43 ) and autism is not seemingly present in the earliest days of development for all ( 44 , 45 ). There is still a way to go.

Autism in a modern clinical sense is also witnessing change in several other quarters. The traditional focus of autism on children, particularly boys, is being replaced by a wider acceptance that (a) autism can and does manifest in girls and women, and (b) children with autism age and mature to become adults with autism. Even the psychological mainstay of autism—issues with social cognition—is undergoing discussion and revision.

On the issue of autism presentation in females, several important themes are becoming more evident. Discussions about whether there may be subtle differences in the presentation of autism in females compared to males are being voiced, pertinent to the idea that there may be one or more specific female phenotypes of autism ( 46 ). Further characterisation has hinted that sex differences in the core domain of repetitive stereotyped behaviours ( 47 ) for example, may be something important when it comes to assessing autism in females.

Allied to the idea of sex differences in autism presentation, is an increasing emphasis on the notion of camouflaging or masking ( 48 ). This masking assumes that there may active or adaptive processes on-going that allow females to hide some of their core autistic features and which potentially contributes to the under-identification of autism. Although some authors have talked about the potentially negative aspects of masking in terms of the use of cognitive resources to “maintain the mask,” one could also view such as adaptation in a more positive light relating to the learning of such a strategy as a coping mechanism. Both the themes of possible sex differences in presentation and masking add to the clinical complexity of reliably assessing for autism.

Insofar as the growing interest in the presentation of autism in adulthood, there are various other clinical considerations. Alongside the idea that the presentation of autism in childhood might not be the same as autism in adulthood ( 49 ), the increasing number of people receiving a diagnosis in adulthood is a worthy reminder that autism is very much a lifelong condition for many, but not necessarily all ( 50 ). The available research literature also highlights how autism in older adults carries some unique issues ( 51 ) some of which will require clinical attention.

Insofar as the issue of social cognition and autism, previous sweeping generalisations about a deficit in empathy for example, embodying all autism are also being questioned. Discussions are beginning debating issues such as how empathy is measured and whether such measurements in the context of autism are as accurate as once believed ( 52 ). Whether too, the concept of social cognition and all the aspects it encompasses is too generalised in its portrayal of autism, including the notion of the “double empathy problem” ( 53 ) where reciprocity and mutual understanding during interaction are not solely down to the person with autism. Rather, they come about because experiences and understanding differ from an autistic and non-autistic point of view. Such discussions are beginning to have a real impact on the way that autism is perceived.

Autism in Sociological Terms

To talk about autism purely through a research or clinical practice lens does not do justice to the existing peer-reviewed literature in its entirety. Where once autism was the sole domain of medical or academic professionals, so now there is a growing appreciation of autism in socio-political terms too, with numerous voices from the autism spectrum being heard in the scientific literature and beyond.

There are various factors that have contributed to the increased visibility of those diagnosed with autism contributing to the narrative about autism. As mentioned, the fact that children with autism become autistic adults is starting to become more widely appreciated in various circles. The expansion of the diagnostic criteria has also played a strong role too, as the diagnostic boundaries of the autism spectrum were widened to include those with sometimes good vocal communicative abilities. The growth in social media and related communication forms likewise provided a platform for many people to voice their own opinions about what autism means to them and further influence discussions about autism. The idea that autistic people are experts on autism continues to grow ( 54 ).

For some people with autism, the existing narrative about autism based on a deficit model (deficits in socio-communicative abilities for example) is seemingly over-emphasised. The existing medical model of autism focusing such deficits as being centred on the person does not offer a completely satisfying explanation for autism and how its features can disable a person. Autism does not solely exist in a sociological as well as diagnostic vacuum. In this context, the rise and rise of the concept of neurodiversity offered an important alternative to the existing viewpoint.

Although still the topic of some discussion, neurodiversity applied to autism is based on several key tenets: (a) all minds are different, and (b) “ neurodiversity is the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome ” ( 55 ). The adoption of the social model of disability by neurodiversity proponents moves the emphasis on the person as the epicentre of disability to that where societal structures and functions tend to be “ physically, socially and emotionally inhospitable towards autistic people ” ( 56 ). The message is that subtle changes to the social environment could make quite a lot of difference to the disabling features of autism.

Although a popular idea in many quarters, the concept of neurodiversity is not without its critics both from a scientific and sociological point of view ( 57 ). Certain key terms often mentioned alongside neurodiversity (e.g., neurotypical) are not well-defined or are incompatible with the existing research literature ( 58 ). The idea that societal organisation is a primary cause of the disability experienced by those with the most profound types of autism is also problematic in the context of current scientific knowledge and understanding. Other issues such as the increasing use of self-diagnosis ( 59 ) and the seeming under-representation of those with the most profound forms of autism in relation to neurodiversity further complicate the movement and its aims.

The challenges that face the evolving concept of neurodiversity when applied to autism should not however detract from the important effects that it has had and continues to have. Moving away from the idea that autistic people are broken or somehow incomplete as a function of their disability is an important part of the evolution of autism. The idea that autism is something to be researched as stand-alone issue separate from the person is something else that is being slowly being eroded by such a theory.

The concept of autism continues to evolve in relation to research, clinical practice and sociological domains. Such changes offer clues as to the future directions that autism may take and the challenges that lie ahead.

The continuing focus on the huge heterogeneity and comorbidity clusters that define autism are ripe for the introduction of a new taxonomy for describing the condition. A more plural definition—the autisms—could represent one starting position ( 60 ) encompassing a greater appreciation that (a) there is variety in the presentation of the core features of autism, (b) there are seemingly several different genetic and biological pathways that bring someone to a diagnosis of autism, (c) different developmental trajectories are an important facet of the autism spectrum, and (d) the various “comorbidities” that variably present alongside autism may offer important clues about the classification of autism. Some authors have stressed that a multi-dimensional conceptualisation may be more appropriate than a categorical concept ( 61 ) but further investigations are required.

In relation to the proposed pluralisation of the label, several long held “beliefs” about autism are also ripe for further investigation. The idea that autism is innate and presents in the earliest days in all does not universally hold ( 45 ). The finding that some children experience a period of typical development and then regress into autism ( 62 ) is becoming more readily discussed in research and clinical circles, albeit not universally so. Similarly, the belief that autism is a lifelong condition for all is also not borne out by the peer-reviewed literature ( 63 ). Terms such as optimal outcome ( 64 ) might not be wholly appropriate, but do nonetheless, shed light on an important phenomenon noted in at least some cases of autism where diagnostic cut-off points are reached at one point but not another. These and other important areas provide initial support for the adoption of the idea of the plural autisms.

Allied to the notion of “the autisms” is the requirement to overhaul the terminology around the use of the “level of functioning” phrase ( 65 ). “High functioning” is typically used to describe those people on the spectrum who present with some degree of communicative language, possess typical or above-average intelligence and who can seemingly traverse the world with only minimal levels of support. “Low functioning”, conversely, is used to describe those with significant support needs who may also be non-communicative. Aside from the societal implications of labelling someone “low functioning” and the possible connotations stemming from such a label, such functioning categorisation do not seemingly offer as accurate a representation as many people might think. The high-functioning autistic child who for example, has been excluded from school on the basis of their behaviour, cannot be readily labelled “high-functioning” if the presentation of their autistic behaviours has led to such a serious outcome. This on the basis that part of the diagnostic decision to diagnose autism is taken by appreciation of whether or not presented behaviours significantly interfere with day-to-day living ( 3 ). What might replace functioning labels is still a matter for debate. The use of “levels of support requirement” utilised in current diagnostic criteria offer a template for further discussions. Such discussions may also need to recognise that the traits of autism are not static over a lifetime ( 51 ) and support levels may vary as a result.

Whatever terminology is put forward to replace functioning labels, there is a need to address some very apparent differences in the way that parts of the autism spectrum are viewed, represented and included in research. Described as the “understudied populations” by some authors ( 66 ) those with limited verbal communicative language and learning disability have long been disadvantaged in research terms and also in more general depictions of autism. In more recent times, there has been a subtle shift to acknowledge the bias that exists against those with a more profound presentation of autism ( 67 ). Further developments are however required to ensure that such groups are not excluded; not least also to guarantee the generalisability of autism research to the entire spectrum and not just one portion of it.

On the topic of generalisability to the entire autism spectrum, the moves to further involve those diagnosed with autism in research, clinical and sociological discussions presents opportunities and obstacles in equal measure. The application of the International Classification of Functioning, Disability and Health (ICF) to autism ( 68 ) to measure “health-related functioning” represented a key moment in autism participatory research. Taking on board various views and opinions about autism, the development of the ICF core autism sets has allowed those with autism and their significant others to voice their opinions about autism ( 69 ).

Such joint initiatives are to be welcomed on the basis of the multiple perspectives they offer including lived experience of autism. But with such participation, so questions are also raised about how representative such opinions are to the entire autism spectrum ( 70 ). Questions on whether those who are able to participate in such initiatives “can ever truly speak for the entire autism spectrum?” are bound to follow. Questions also about whether such first-hand reports are more important than parental or caregiver input when it comes to individuals on the autism spectrum are likewise important to ask. This bearing in mind that those with autism participating in such initiatives bring with them the same potential biases as researchers and clinicians carry with them about the nature of autism, albeit not necessarily in total agreement.

The translation of research findings into clinical practice represents another important issue that has yet to be suitably addressed. Although covering a sizeable area, several important stumbling blocks have prohibited the move from “bench to bedside” when it comes to autism research. The focus for example, on the overt behavioural presentation of autism, has in some senses continued to hinder the translational progress of more biological-based findings into autism practice. Nowhere is this seemingly more evident than when it comes to the over-representation of gastrointestinal (GI) issues in relation to autism and their management or treatment. Despite multiple findings of such issues being present ( 16 ), very little is seemingly offered despite autism-specific screening and management guidance being in place for nearly a decade at the time of writing ( 71 ). Other quite consistently reported research findings in relation to low functional levels of vitamin D ( 72 ) for example, have similarly not sparked massive shifts in clinical practices. Ignoring such potentially important clinical features contributes to a state of relative health inequality that is experienced by many on the autism spectrum.

Without trying to prioritise some areas over others, there are some important topics in relation to autism that are becoming important to autism research and clinical practice. Many of these topics are more “real life” focused; taking into account the impact of autism or autistic traits on daily living skills and functioning. These include issues such as the truly shocking early mortality statistics around autism ( 73 ) and the need for more detailed inquiry into the factors around such risks such as suicide ( 74 ) and self-injury ( 75 ) and wandering/elopement ( 76 ) alongside the considerable influence of conditions such as epilepsy.

Although already previously hinted at in this paper, the nature of the relationship between autism and various “comorbid” conditions observed to be over-represented alongside is starting to become more widely discussed in scientific circles. Whether for example, moves to intervene to mitigate issues such as depression in relation to autism might also have knock-on effects on the presentation of core autistic features is something being considered. Interest in other topics such as employment, ageing, parenting and the worrying issue of contact with law enforcement or criminal justice systems ( 77 ) are also in the ascendancy.

Conclusions

Autism as a diagnostic label continues to evolve in research, clinical practice and sociological terms. Although the core features described by Kanner and others have weathered such evolution, important shifts in knowledge, views and opinions have influenced many important issues around those core behaviours. As well as increasing understanding of autism, many of the changes, past and present, have brought about challenges too.

Author Contributions

All authors contributed equally to the writing and review of this manuscript.

This paper was fully funded by ESPA Research using part of a donation from the Robert Luff Foundation (charity number: 273810). The Foundation played no role in the content, formulation or conclusions reached in this 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.

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Keywords: autism, research, clinical, sociological, knowledge, future

Citation: Whiteley P, Carr K and Shattock P (2021) Research, Clinical, and Sociological Aspects of Autism. Front. Psychiatry 12:481546. doi: 10.3389/fpsyt.2021.481546

Received: 28 June 2019; Accepted: 30 March 2021; Published: 29 April 2021.

Reviewed by:

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

*Correspondence: Paul Whiteley, paul.whiteley@espa-research.org.uk

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

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Article Contents

Introduction, increase in prevalence of autism spectrum disorder, clinical presentation, dsm-5 changes in autism spectrum criteria, implications of changes in dsm-5 diagnostic criteria for autism spectrum disorder, gender related differences in autism presentation, aetiology of asd, controversial risk factors, controversial treatments and interventions, early diagnosis and intervention, future directions, conclusions, conflict of interest statement.

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Autism spectrum disorder

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Lisa Campisi, Nazish Imran, Ahsan Nazeer, Norbert Skokauskas, Muhammad Waqar Azeem, Autism spectrum disorder, British Medical Bulletin , Volume 127, Issue 1, September 2018, Pages 91–100, https://doi.org/10.1093/bmb/ldy026

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This article is based on key recent published literature including international guidelines and relevant reviews and meta-analyses. Authors have also supplemented this material with their own clinical experience.

There is an agreement that autism spectrum disorder (ASD) have a strong hereditary component. There is also a consensus that the reported prevalence estimates have increased in the last 5 years. There is strong support for using the broader spectrum disorder conceptualization of the DSM-5.

Higher public awareness of ASD has generated several controversial theories of causation. We review a number of environmental risk factors receiving media attention including: vaccines, mercury, heavy metal exposure and Selective Serotonin Uptake Inhibitors (SSRIs). Popular yet controversial treatment interventions are discussed. Early diagnostic screening tools are also addressed.

There is increasing scientific interest in identifying biomarkers of autism with potential for early diagnosis, prognostic indicators and predictive treatment responses. We review evidence from genetics, neuroimaging and eye tracking as candidate biomarkers.

Family studies point to a strong hereditary component in the aetiology of autism. However these studies have not established 100% concordance rates, suggesting a role for environmental factors. The gene–environment interplay has not received enough attention in scientific research. This represents an important new avenue for research in ASD.

Autism spectrum disorder (ASD) is one the most common neurodevelopmental disorders, 1 characterized by persistent impairment in reciprocal communication and social interactions as well as restricted repetitive pattern of behaviours, interests or activities. 2 Kanner 3 wrote the first published description of autism in 1943 and after one year, Hans Asperger, a paediatrician from University of Vienna wrote about a group of children with almost similar pattern of behaviours as Kanner’s. The disorder is evident in all racial, ethnic and socioeconomic groups. 4 The diagnostic process of ASD is complex and recent changes in diagnostic criteria and how the disorder is conceptualized has initiated a discussion among professionals, policy makers as well as patients and their families. 5 In order to ensure best standards of care for these individuals, it is important for clinicians to have a better understanding of the disorder. This review provides a broader understanding of research findings, highlights current areas of agreement and controversies, clinical implications as well as critical issues for the research.

There has been a dramatic increase in the prevalence of autism spectrum disorders, with current estimates of 1 in 68 children in the United States having ASD. 4 This figure is ~30% higher than what was reported in 2012 by the Center for Disease Control as 1 in 88 children having autism. However, it is unclear whether these numbers represent a true increase in prevalence, or are the result of increased awareness, differences in study methodology, or inclusion of subthreshold cases.

Autism is currently conceptualized as a spectrum disorder with significant variations in patients’ social, communicative and intellectual abilities. Symptoms lead to significant impairment in multiple domains of adaptive functioning. Individuals suffering from ASD need varying levels of psychosocial support to achieve relative independence, and in some cases, may need continuous care.

Social communication

Depending on age and intellectual abilities, children diagnosed with autism have a varying degree of communication deficits. These deficits range from speech delays, monotonous speech, echolalia, pronoun reversal, poor comprehension to a complete lack of spoken language. Nonverbal communication is also impaired and may include poor eye contact, difficulties in understanding facial expressions and descriptive gestures, to name a few.

Another important feature of individuals with ASD is deficits in socio-emotional reciprocity. These individuals are less likely to initiate conversation, show less interest in peer interactions and overall find it difficult to adjust their behaviour according to different social situations.

Restricted repetitive behaviours

Individuals with ASD have a varying presentation of restricted and repetitive behaviours. Repetitive behaviours may include simple stereotypical motor behaviour (e.g. hand flapping, finger flicking), repetitive use of objects (e.g. lining up toys), or repetitive speech (echolalia). Restricted behaviours may present as resistance to change or highly restricted fixated interests, which are abnormal in intensity or focus. Further, some children with ASD my present hyper and hyposensitivity to various sensory stimuli, presenting an extreme response to various sounds, lights or smells, or a decreased reaction to pain.

Associated clinical features

Individuals with ASD often have comorbid intellectual disability and also are prone to emotional difficulties such as anxiety or depression.

Comparison of changes in DSM-5 with DSM IV-TR in the diagnostic criteria of autism spectrum disorder

Differences in DSM-5 criteria for ASD in comparison to DSM-IV 6 have led to debates regarding the impact on the prevalence of the disorder, as well as the diagnosis, and subsequently clinical practice.

The DSM-5 taxonomy offers more stringent criteria for a diagnosis of ASD. 7 The literature raises concern that individuals who used to get the diagnosis of Asperger’s disorder, or Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) under DSM-IV, are now less likely to meet criteria for the ASD diagnosis by using DSM-5 and therefore will not be eligible for services. 8 Studies also support the notion that young children and females 9 may be at higher risk of being underdiagnosed according to the DSM-5 criteria. 10 – 12 These results are of concern as children who are less impaired are more likely to benefit from early intervention, may now be least likely to qualify for such services.

It is however important to note before the publication of DSM-5, there was a growing consensus among clinicians that subcategories of pervasive developmental disorders in DSM IV cannot be reliably diagnosed. 9 , 13 Thus, despite the concerns of being a stringent criteria, efforts to conceptualize autism as a broad spectrum of disorders in the DSM-5 had met with less criticism by professionals. Several groups investigating the validity of shifting from a triadic model to a two-factor model (integration of impaired social interaction and limited social communication into one category) have also yielded support for it. 9 , 14

There are no significant differences in ASD core symptomatology between males and females. However, research consistently shows that females tend to have more severe symptoms, more associated intellectual disability, as well as higher risk of comorbid psychiatric problems. 15

There is a consensus in the literature that autism is caused by both genetic and environmental factors. Although family studies support a strong genetic component in the aetiology of idiopathic autism, concordance rates are not 100%, indicating that environmental factors also contribute to ASD. 16

Unproven risk factors cited in the literature

Measles, mumps and rubella

Few subjects in the field of autism have garnered greater attention and controversy than that of vaccines and their potential causal link to autism. The issue was first brought forward in 1998 after an article published in the Lancet 20 in which authors postulated a causal association between the measles, mumps and rubella (MMR) vaccine and the development of autism. The study involved a group of 12 children with a prior diagnosis of autism who had also received the MMR vaccine before being diagnosed with autism. In their investigation, the authors concluded that the children were found to have an unrecognized form of inflammatory bowel disease along with small traces of the measles virus that matched the strain of measles in the vaccine. These findings led to the interpretation that the MMR vaccine, which contains a live virus, had caused a measles infection in the gastrointestinal system which in turn led to a ‘leaky gut.’ Autism was hypothesized to be the result of toxins entering the blood stream via the gut and affecting the nervous system.

The outcome of this publication gained significant media attention, however an overwhelming body of scientific evidence has since been put forth refuting a relationship between ASD and MMR, 21 , 22 yet the issue remains controversial. The initial article published in Lancet on this topic was retracted in 2010 citing that ‘several elements’ of 1998 paper ‘are incorrect, contrary to the findings of an earlier investigation’.

Mercury and thimerosal

Another issue that added fuel to the vaccination controversy was thimerosal. Thimerosal, a mercury-based vaccine preservative is frequently found in combined vaccines, including diphtheria-tetanus-pertussis (DTP). Thimerosal contains 50% ethyl mercury, which is similar to methylmercury, which at high doses can be toxic to humans. 23 The controversy with thimerosal was not related to the MMR vaccine, given this vaccine never contained ethyl mercury. However, public scepticism with vaccination led to the viewpoint that high levels of thimerosal could lead to autism in children. A vast amount of scientific data on the topic has overwhelmingly disproven this claim. 24 Despite the lack of evidence and steps taken by public health officials to counteract these claims, this controversy has had significant consequences on childhood immunity and infectious disease control.

Heavy metal exposure

One meta-analyses 25 has examined metal concentrations in children with ASD. The heavy metals most commonly studied in this population have been cadmium, lead, arsenic and aluminium. There is little evidence to support a link between aluminium and ASD, whereas the evidence concerning the others is conflicting. The authors conclude that while there is evidence suggesting heavy metal exposure as a risk factor for the development of autism, data to conclusively support these claims is still lacking.

Air pollution is speculated to have neurological consequences including inflammation and oxidative damage in the brain that, in turn, leads to abnormal neural development. There is also some research suggesting that residing near a freeway or highway during the latter stages of pregnancy could increase the risk of a child developing autism. 26 Again, conclusive evidence supporting this claim is lacking.

Selective serotonin reuptake inhibitors

The evidence for a link between prenatal maternal selective serotonin reuptake inhibitors (SSRI) antidepressants exposure and ASD is relatively new and controversial and mainly relies on animal and preclinical studies. 27

The challenge of developing a universal theory on the aetiology of autism, along with variations in the developmental trajectory are some of the factors that account for the wide range of interventions proposed to, and endorsed by, families of children with ASD. At times, families sometimes turn to interventions which lack empirical validity or have even been found to be harmful to the child development. 28

In recent years, dietary interventions including gluten-free or casein-free diets (GFCF) have received a significant amount of interest from parents and researchers alike. In Europe, according to one report, 13.5% of families of children with ASD 28 have tried this dietary restriction. The rationale for this approach appears to stem from the ‘Opioid-Excess Theory’, 20 , 29 according to which some individuals do not produce sufficient gluten- and casein-related digestive enzymes. Without enough of these enzymes, gluten and casein-related peptides do not get adequately metabolized and cross the brain–blood barrier. Symptoms of ASD are believed to be the result of these peptides attaching to opioid neuro-receptors, which in turn disrupts the central nervous system. However, support for this theory, the underlying mechanism, and method of treatment is limited.

The ScanBrit study 30 examined the effects of a GFCF diet in Danish children and found positive changes in symptom presentation following this intervention. However, there were several limitations to this study, including the lack of a placebo group and a high attrition rate. In contrast, two recent systematic reviews 31 , 32 have since shown no significant differences in symptom relief in children with ASD following a GFCF diet.

Dietary supplements are another popular nutritional approach considered by parents and caregivers of children with ASD. These include mineral supplementation (e.g. calcium, zinc, iron), as well as folic acid. Vitamin D supplementation has received significant attention because of its impact on neural developmental, anti-inflammatory properties and effects on detoxification pathways. However, evidence supporting dietary and vitamin D supplementation is again limited and inconsistent. 33 , 34

Hyperbaric oxygen

Hyperbaric oxygen therapy (HBOT) provides a higher concentration of oxygen by delivering oxygen to a chamber with elevated atmospheric pressure. The rationale for HBOT in individuals with autism includes its potential to heighten cerebral perfusion, reduce inflammation and oxidative stress. 35 Advocates of HBOT believe that improvements in these underlying pathophysiological mechanisms will lead to improvements in autistic symptoms. Evidence supporting its effectiveness in relieving symptoms of ASD is mixed at best. The few randomized controlled studies 36 that have been conducted have shown no evidence to support the benefit of HBOT in children with ASD, with some identifying adverse events in the hyperbaric oxygen group (minor-grade ear barotrauma). The United States Food and Drug Administration (USFDA) 37 has published a warning for parents cautioning them against the use of HBOT in treating symptoms of ASD.

Chelation therapy

Chelation therapy involves the administration of several chemical substances to bind and then remove specific metals from the person’s body. It is estimated that between 7% and 8% of children with ASD in the United States 38 and 1–3% of children with ASD in Europe 28 undergo this form of therapy. However, one randomized clinical trial comparing multiple doses of chelating agents have found no evidence to suggest that oral chelating agents had any effect on ASD symptomatology. 39 Moreover, serious adverse side effects have been reported including hypocalcaemia and impaired renal function in individuals undergoing chelation therapy.

Pharmacological treatments

Medications are sometime needed to treat the comorbid symptoms of irritability, aggression, and hyperactivity in individuals of ASD. The FDA has approved two atypical antipsychotic medications, risperidone and aripiprazole for this purpose. 40 , 41 Although evidence has suggested short-term improvements in the behaviour of children with ASD, long-term benefits and pros and cons of this strategy are still being debated.

SSRIs are also often prescribed to treat comorbid symptoms in ASD, but clinical trials have yet to demonstrate their effectiveness. A review of nine randomized controlled-trials assessed various SSRIs including fluoxetine and citalopram 42 but failed to show a positive result in symptoms reduction.

Autism is a clinical diagnosis, made on the presentation and history of the individual and in spite of a very active hunt for biomarkers, no laboratory test has been found. The literature on early diagnosis and treatment is in agreement that there is an inverse relationship between age at diagnosis and a positive prognosis, which makes early detection by health care providers critical. A 10-year study spanning from 2004 to 2014 examined diagnostic trends in the UK 43 and found no statistical change in improving early detection during this period, with the average age at diagnosis remaining at 55 months. This was despite parents noting their first concern about their child development much earlier than the time when the child was diagnosed with ASD.

The American Academy of Pediatrics 44 , 45 has recommended that paediatricians use autism screening tools, such as the Modified Checklist for Autism in Toddlers (M-CHAT) and the Social Communication Questionnaire (SCQ) at the 18 and 24-month check-up visits. A newer, improved two-step revision of the M-CHAT with Follow-up Interview (M-CHAT/F), has been developed, and is reliable and sensitive in identifying toddlers at high, medium and low risk for ASD. 46 Data are still lacking to determine if an early detection has in fact improved following its implementation.

Early detection has a positive impact on prognosis, in large part due to the fact that those children are able to benefit from early intervention. A substantial amount of scientific literature is derived from data looking at the efficacy of Applied Behaviour Analysis (ABA). ABA is an intensive treatment programme, developed in the 1960s, based on using learning principles, such as positive reinforcement to help children develop appropriate behaviours. Over the last five decades, there has been accruing evidence documenting the effectiveness of ABA in treating ASD. 47 There is also evidence that those children who received earlier and more intensive ABA therapy, were more likely to have a positive prognosis in later childhood and adulthood. 48

Biological markers or biomarkers are defined as ‘biological variables associated with the disease of interest and measurable directly in a given patient or his/her biomaterials using sensitive and reliable quantitative procedures’. 49 The identification of early biomarkers of autism is important as it can be used in providing earlier, more reliable diagnoses, and helps to predict prognosis and response to specific interventions.

As noted earlier, there is strong support for a hereditary component to the presentation of ASD with higher concordance rates of autism in monozygotic twins than dizygotic twins. Some studies are also finding higher rates in families with two or more children diagnosed with autism, with rates approaching 50% affected. However, to date, no consistent genetic variant has been identified. Moreover, given its varied clinical and behavioural manifestations, it has been estimated that there are over 500 distinct genetic variants that may be related to ASD, 50 which makes it difficult to identify the target genes accurately.

Neuroimaging

Head circumference and grey matter thickness is under investigation as a relevant diagnostic indicator, given findings of accelerated brain growth and brain size in ASD children. Whereas newer neuroimaging techniques have helped to elucidate findings on the pathophysiology of ASD, the current scientific evidence on the subject is not adequate to establish reliable neuroimaging biomarkers. 51

Eye tracking

One promising technique is using the eye-tracking technology under the assumption that infants and toddlers with ASD prefer geometric images as compared to social images. One such study 52 examined a subset of children with ASD who fixated on the geometric images and concluded that visual preference might potentially be used as an early indicator in identifying subtypes with more severe symptoms and likely negative prognosis.

A common feature of autism research is that studies mostly consist of small samples and do not portray the full heterogeneity that is present in ASD. Given the various pathophysiological pathways that have been proposed to account for the development of this disorder, it is doubtful that a single biomarker is responsible for ASD. Furthermore, the heterogeneous features of ASD mean that different ASD patients have different requirements when it comes to treatments and interventions.

One large scale investigation aiming to address this issue is the EU‑AIMS Longitudinal European Autism Project (LEAP). LEAP is a worldwide, multidisciplinary study 52 that will include ASD and control participants across childhood and into adulthood collecting data on genomics, prenatal environmental risk factors, magnetic resonance imaging (MRI), functional MRI (fMRI), electroencephalogram (EEG) and biochemical biomarkers. The study holds promise not only in its potential to identify markers of autism but also to provide clinicians with predictive value in determining symptom progress and treatment response, which will also open up the possibility of targeted treatments.

As noted earlier, while there is a strong hereditary component thought to be involved in the aetiology of autism, environmental factors are also believed to play a role in its development. Some of the processes thought to be involved includes metabolic processes such as oxidative stress, immune function and inflammation. These processes are believed to be derived from environmental influences such as the parent’s immune functioning, pollutants, diet and other risk factors as listed above. The gene–environment interaction has received less attention than basic genetics, but future research using a developmental framework and taking into account the interplay between genes and their environment represents yet another scientific approach.

ASD is a complex and heterogeneous neurodevelopmental disorder. In the last decades, there has been a steep rise in public awareness on ASD that has also coincided with a rise in prevalence. Whether the rising prevalence is a true reflection of an increase in rates of ASD or due to other confounding factors, these findings highlight the need for further research into ASD, particularly with regards to its aetiology, treatments and interventions. Evidence from biomarker studies offers promising insight into early identification and targeted treatments, but research is still in its infancy. Supporting and empowering families with children diagnosed with ASD and helping highlight their children’s strengths can also help make a difference in these families’ lives. 53

The authors have no potential conflicts of interest.

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• Published: 28 May 2021

Advances in autism research, 2021: continuing to decipher the secrets of autism

• Julio Licinio   ORCID: orcid.org/0000-0001-6905-5884 1 &
• Ma-Li Wong 1  

Molecular Psychiatry volume  26 ,  pages 1426–1428 ( 2021 ) Cite this article

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• Autism spectrum disorders
• Neuroscience

We are proud to publish this Special Issue focused on autism, a topic that has been exceedingly important for Molecular Psychiatry since our inception. It is not too bold a statement to say that we were a fundamental contributor to bringing autism to the forefront of the national discourse. A Pubmed search reveals 403 articles published in Molecular Psychiatry since our founding in 1996. Our first autism article by Vincent et al., published in July 1996, examined the fragile X syndrome gene (FMR1) for mutations in autistic individuals, using single-stranded conformational polymorphism analysis; those authors identified three new FMR1 polymorphisms and identified specific and significant association findings with autism [ 1 ].

In late 2001–early 2002 we received four exciting papers with findings on the genetics of autism that were published together in our March 2002 issue, with an accompanying editorial [ 2 , 3 , 4 , 5 , 6 ]. We issued then a press release that was picked up by Time magazine and served as the basis for their unprecedented May 6, 2002 cover story on autism, featuring as that iconic magazine’s cover a young boy who was visibly autistic [ 7 ]. That was the first time that a person with autism was the cover of a national magazine. The magazine’s cover displayed in big yellow letters “Inside the world of autism” and it had a subtitle stating “More than one million Americans may have it, and the number of new cases is exploding. What scientists have discovered. What families should know.” The full story, by Nash [ 8 ], was entitled: “The Secrets of Autism,” with the following subtitle: “The number of children diagnosed with autism and Asperger’s in the U.S. is exploding. Why?” Time ’s cover article was so successful that their editors expanded that from a single issue into an entire series on autism over multiple issues. That Time series effectively made autism emerge as a mainstream topic of kitchen table conversations across America. As that effort was triggered by our press release and four articles on autism, it is reasonable to boast that Molecular Psychiatry launched the national conversation on autism.

The four papers highlighted in our March 2002 issue were within the first 20 articles that we published on this topic. Now, 383 papers later, we have a much more substantial body of work that further unravels the secrets of autism, the culmination of which is this autism Special Issue, with 26 truly superb papers on autism [ 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 ]. These extraordinary articles cover essentially all aspects of this disorder, from the training of specialists, to the interface with other disorders, such as polycystic ovarian syndrome and Alzheimer’s disease, and in-depth analyses of genetics, structural and functional imaging, as well as neuroscience, including postmortem brain studies, transcriptome of induced pluripotent stem cell models, assessments of the role of vitamin D, and studies highlighting the contributions of inflammatory mediators to autism.

We have had for over three decades a particular interest on the interface of immune mediators and psychiatric disorders [ 35 ]. It is very rewarding to see the interface of immune mediators and psychiatry evolve from a hypothesis, that we and others explored decades ago, into a broad and established area within psychiatric neuroscience. As we have developed a new model of analysis of the simultaneous contributions of multiple genes and environmental factors to a psychiatric phenotype [ 36 ], were also encouraged to see studies looking at the polygenic risk for autism in the context of childhood trauma, life-time self-harm, and suicidal behavior and ideation [ 30 ], as well in comparison to several other psychiatric disorders [ 32 ].

One paper in this issue, by Frye et al., is highly usual, and particularly intriguing: it investigates the role of the mitochondrion, in the influence of prenatal air pollution exposure on neurodevelopment and behavior in 96 children with autism spectrum disorder [ 22 ]. Second and third trimester average and maximal daily exposure to fine air particulate matter of diameter ≤2.5 µm (PM 2.5 ) was obtained from the Environmental Protection Agency’s Air Quality System. Mediation analysis found that mitochondrial respiration linked to energy production accounted for 25% and 10% of the effect of average prenatal PM 2.5 exposure on neurodevelopment and behavioral symptoms, respectively. Those results suggest that prenatal exposure to PM 2.5 disrupts neurodevelopment and behavior through complex mechanisms, including long-term changes in mitochondrial respiration and that patterns of early development need to be considered when studying the influence of environmental agents on neurodevelopmental outcomes.

We are honored to have initiated the national conversation on autism twenty years ago and we believe that the 403 autism papers published to date in Molecular Psychiatry , including, but not limited to those highlighted in this Special Issue, report major advances in a key area of molecular psychiatry. It is particularly rewarding to see that these articles cover the full spectrum of research translation [ 37 ], from molecules to society.

In future issues, Molecular Psychiatry will continue to publish outstanding advances in autism research.

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Pasca SP, Veenstra-VanderWeele J, McPartland JC. Research and training in autism spectrum disorder to catalyze the next genomic and neuroscience revolutions. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0830-5 . [Epub ahead of print].

Lombardo MV. Ribosomal protein genes in post-mortem cortical tissue and iPSC-derived neural progenitor cells are commonly upregulated in expression in autism. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0773-x . [Epub ahead of print].

Griesi-Oliveira K, Passos-Bueno MR. Reply to Lombardo, 2020: An additional route of investigation: what are the mechanisms controlling ribosomal protein genes dysregulation in autistic neuronal cells? Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0792-7 . [Epub ahead of print].

Menon V, Andrade C, Thennarasu K. Polycystic ovarian syndrome and autism spectrum disorder in the offspring: Should the primary outcome have been different? Mol Psychiatry. 2019. https://doi.org/10.1038/s41380-019-0571-5 . [Epub ahead of print].

Chapman R, Veit W. The essence of autism: fact or artefact? Mol Psychiatry 2020. https://doi.org/10.1038/s41380-020-00959-1 . [Epub ahead of print].

Niesler B, Rappold GA. Emerging evidence for gene mutations driving both brain and gut dysfunction in autism spectrum disorder. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0778-5 . [Epub ahead of print].

Antunes C, Da Silva JD, Guerra-Gomes S, Alves ND, Ferreira F, Loureiro-Campos E, et al. Tet3 ablation in adult brain neurons increases anxiety-like behavior and regulates cognitive function in mice. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0695-7 . [Epub ahead of print].

Xiong GJ, Cheng XT, Sun T, Xie Y, Huang N, Li S, et al. Defects in syntabulin-mediated synaptic cargo transport associate with autism-like synaptic dysfunction and social behavioral traits. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0713-9 .

Rapanelli M, Tan T, Wang W, Wang X, Wang ZJ, Zhong P, et al. Behavioral, circuitry, and molecular aberrations by region-specific deficiency of the high-risk autism gene Cul3. Mol Psychiatry. 2019. https://doi.org/10.1038/s41380-019-0498-x . [Epub ahead of print].

Guo D, Peng Y, Wang L, Sun X, Wang X, Liang C, et al. Autism-like social deficit generated by Dock4 deficiency is rescued by restoration of Rac1 activity and NMDA receptor function. Mol Psychiatry. 2019. https://doi.org/10.1038/s41380-019-0472-7 . [Epub ahead of print].

Gordon A, Forsingdal A, Klewe IV, Nielsen J, Didriksen M, Werge T, et al. Transcriptomic networks implicate neuronal energetic abnormalities in three mouse models harboring autism and schizophrenia-associated mutations. Mol Psychiatry. 2019. https://doi.org/10.1038/s41380-019-0576-0 . [Epub ahead of print].

Ben-Reuven L, Reiner O. Dynamics of cortical progenitors and production of subcerebral neurons are altered in embryos of a maternal inflammation model for autism. Mol Psychiatry. 2019 Nov 18. https://doi.org/10.1038/s41380-019-0594-y . [Epub ahead of print].

Ramirez-Celis A, Becker M, Nuno M, Schauer J, Aghaeepour N, Van de Water J. Risk assessment analysis for maternal autoantibody-related autism (MAR-ASD): a subtype of autism. Mol Psychiatry. 2021. https://doi.org/10.1038/s41380-020-00998-8 . [Epub ahead of print].

Frye RE, Cakir J, Rose S, Delhey L, Bennuri SC, Tippett M, et al. Prenatal air pollution influences neurodevelopment and behavior in autism spectrum disorder by modulating mitochondrial physiology. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-00885-2 . [Epub ahead of print].

Lee BK, Eyles DW, Magnusson C, Newschaffer CJ, McGrath JJ, Kvaskoff D, et al. Developmental vitamin D and autism spectrum disorders: findings from the Stockholm Youth Cohort. Mol Psychiatry. 2019. https://doi.org/10.1038/s41380-019-0578-y .

Griesi-Oliveira K, Fogo MS, Pinto BGG, Alves AY, Suzuki AM, Morales AG, et al. Transcriptome of iPSC-derived neuronal cells reveals a module of co-expressed genes consistently associated with autism spectrum disorder. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0669-9 . [Epub ahead of print].

Rontani P, Perche O, Greetham L, Jullien N, Gepner B, Feron F, et al. Impaired expression of the COSMOC/MOCOS gene unit in ASD patient stem cells. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0728-2 . [Epub ahead of print].

Ivashko-Pachima Y, Hadar A, Grigg I, Korenkova V, Kapitansky O, Karmon G, et al. Discovery of autism/intellectual disability somatic mutations in Alzheimer’s brains: mutated ADNP cytoskeletal impairments and repair as a case study. Mol Psychiatry. 2019. https://doi.org/10.1038/s41380-019-0563-5 . [Epub ahead of print].

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Andersson M, Tangen A, Farde L, Bolte S, Halldin C, Borg J, et al. Serotonin transporter availability in adults with autism-a positron emission tomography study. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-00868-3 . [Epub ahead of print].

Zurcher NR, Loggia ML, Mullett JE, Tseng C, Bhanot A, Richey L, et al. [(11)C]PBR28 MR-PET imaging reveals lower regional brain expression of translocator protein (TSPO) in young adult males with autism spectrum disorder. Mol Psychiatry. 2020. https://doi.org/10.1038/s41380-020-0682-z . [Epub ahead of print].

Warrier V, Baron-Cohen S. Childhood trauma, life-time self-harm, and suicidal behaviour and ideation are associated with polygenic scores for autism. Mol Psychiatry. 2019. https://doi.org/10.1038/s41380-019-0550-x . [Epub ahead of print].

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Licinio, J., Wong, ML. Advances in autism research, 2021: continuing to decipher the secrets of autism. Mol Psychiatry 26 , 1426–1428 (2021). https://doi.org/10.1038/s41380-021-01168-0

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

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

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

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

Parameters of the Commentary

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

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

Historical Precedents to Education Interventions

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

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

Key Themes in Education for Autistic Children and Youth

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

Adult-led and Naturalistic Forms of Instruction

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

Adult-Directed and Discrete Trial Training

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

Naturalistic Intervention

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

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

Education in Inclusive Settings

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

Intervention and Instruction in Content Areas

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

Explicit Instruction for Academic Skills

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

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

Interventions to Promote Social Engagement, Skills and Relationships

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

Adult-led Teaching and Reinforcement Interventions

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

Social Reciprocity and Peer-Mediated Interventions

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

Group-Based Social skills Training

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

Forms and Functions of Communication for Autistic Children and Youth

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

Communication and Verbal Language Skills

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

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

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

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

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

Aversive Strategies and Increased Focus on Positive Behavior Supports and Intervention

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

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

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

Collateral Mental Health Conditions

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

Post-School Outcomes

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

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

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

Self-Determination

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

Technology-Assisted Instruction and Interventions

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

Ineffective Interventions

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

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

Evidence-Based Practices for Children and Youth with Autism

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

Schools as Contexts for Implementing Interventions

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

Complexity of School Settings

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

Structure of Schools

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

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

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

Disparities in Schools

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

Emergence of iSciences

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

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

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

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

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In fact, autism—or more accurately, autism spectrum disorders—is a complex of disorders that occurs during brain development. All of them are united by a relative similarity of symptoms, such as social dysadaptation, difficulties with verbal communication, the lack of empathy or emotional expression, repetitive behaviors, and so on. According to the recent (in 2013) update to the DSM-5 diagnostic manual, all diagnoses related to autism, such as autistic disorder, childhood disintegrative disorder, or pervasive developmental disorder, were united under the diagnosis of autism spectrum disorders (ASD) (Autism Speaks).

The period during which ASD usually develops is considered to be between the first and the third years of a child’s life. According to the statistics, this is a more frequent condition than it was believed before; in 1943, when ASD had been first described, one of 2,000 children was considered to have autism. Nowadays, however, scientists consider that ASD or autism-related conditions can be observed in one out of only 68 children; besides, there is up to a 20% chance that a second child in a family will have autism—given that the first one already has one of the ASDs (UCSD).

Despite the decades of research studies in this field, it is still difficult to name what exactly causes autistic development; what experts agree about is that it might result from more than just a single cause. Numerous evidence shows that autism is caused by a complex of physical factors—not by emotional traumas or mistreatment in childhood—that affect brain development. Some forms of autism may have genetic origins; recent studies have been aimed at determining which genes are responsible for the development of ASD. The main difficulty here is that autism is most likely determined by the ways genes interact with each other, and the ways a child is affected by his or her environment; therefore, there is no genetic testing allowing to diagnose a child’s pre-disposition to developing ASD (NAS).

Symptoms of autism-related disorders are well known: undeveloped social behavior and difficulties with social adaptation (up to complete isolation from one’s society); delayed or in some other way impaired cognition; severely limited interests—an autist shows interest only towards a small part of the world around him or her, sometimes completely ignoring the rest of it; repetitive or ritual behavior; language abnormalities (such as echolalia—repeating once heard words for hours a long time after they were heard) and so on (UCSD). At the same time, many autistic persons possess talents not commonly found in regular people: for example, they can be brilliant mathematicians, or have photographic memory—like Stephen Wiltshire , who created an extremely detailed painted panorama of New York City after seeing it just once.

According to statistics, one out of 68 children has ASD-related symptoms, so the amount of autistic people around us is much higher than expected. However, even though some symptoms such as repetitive behaviors, limited interests, language difficulties, or social dysadaptation can intervene in normal social interactions, they do not necessarily prevent an autistic person from living a normal life, especially with the help of other people. This is also proved by the fact that you might run into several people with ASD during your regular Sunday shopping without even realizing it.

“What is Autism?” Autism Speaks. N.p., n.d. Web. 16 Jan. 2016.

“Causes of Autism.” NAS. N.p., n.d. Web. 16 Jan. 2016.

“What is Autism?” UCSD. N.p., n.d. Web. 16 Jan. 2016.

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Jackie Schuld Art Therapy Blog

• Feb 17, 2023

The Great List of Autistic Essays

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

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

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

Autism in a Neurotypical World

What Would a World Designed by Autistic People Be Like

The Harm in "They're a Little Autistic"

Autism Does Not Directly Cause Socializing Problems

Please Trust My Lived Autistic Experience

Can Someone Please Create a Neurodivergent Intentional Living Community

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

How Neuro-Bias Shows Up in Professional Testing

Your Autistic Experience Sounds Just LIke my Neurotypical One

Neurotypical Words that Don't Work for Autistics: Overachiever

But Neurotypicals Experience That, Too!

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

The Fear of Being a Hypocritical Autistic

Neurodiversity: Us vs Them?

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

Autism Characteristics

The Autistic Mind Loves to Take Detours

4 Reasons Why Autism Symptoms Lists are Confusing

My Autistic Brain: Sunshine and Detours

The Joys of Being Autistic: Part 1

Stop Saying Autistic People Can't Empathize

Redefining Fun for Autistic Adults

9 Reasons Why Autism Looks So Similar to CPTSD

We Need More Depictions of the Interior Experience of Autism

Clarity is What my Autistic Mind Craves

How Trauma and Autism Can be a Confusing Mix to Decipher

Why am I like This? Understanding the Autistic Brain

My Autistic Mind Does What it Wants

The Dissociated Autistic Performance State

The Joys of Being Autistic: Increased Creativity and Innovation

My Autistic Memory Is Not the Same as Others

The Firehouse Dilemma: Autism and Infodumping

The Variability of the Autistic Sensory System

5 Reasons Autistics are Especially Hard on Themselves

The Shame That Often Accompanies Autism

Knowing You’re Different as an Autistic Adult

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

Disability and Internalized Ableism

I Had to Dismantle My Fear of Autistic People

Is Autism a Disability?

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

Dog Training

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

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

5 Tips to Integrate a Dog into Your Autistic Life

Defining and Explaining Autism

What I Wish Others Knew About Autism

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

How Low and High Autism Labels are Misleading

We Need All the Autism Theories and Models

Autism Can Be a Murky Thing To Understand

How I Explain Autism to Someone Unfamiliar With It

What is Late Identified Autism

Autistic Statistics are Not Accurate for Late-Identified Autistics

I'm Here for the Autistic Awakening

How It Helps to Know You’re Autistic

Why It Matters to Know You're Neurodivergent

What is Neurodiversity and Why Does it Matter

How Neurodivergent Acceptance Can Improve Our Lived Experiences

How Unidentified Autistics are Taught to Socially Camouflage and Mask

Is There a World Where I can Be Unmasked?

The False Dichotomy of Masked and Unmasked Autism

6 Reasons Why UnMasking Is Harder Than it Sounds

What if You have to Mask Everywhere?

My Personal Experience as an Autistic

Hating Cooking as an Autistic Adult

I Make Giant Lists About Autism for Fun

The Challenges of Writing Publically About Autism

The Risk of Sharing my Autistic Passions with Others

I'm Reclaiming Weird for My Autistic Self

I Expand and Then I Contract

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

Respecting my Limits as an Autistic Business Owner

I Need to Lessen the Pressure on my Autistic Self

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

Embracing Who I am as an Autistic Adult

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

A Letter from An Autistic Adult to Trust

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

Why This Autistic Writer Didn't Respond to Your Comment

Relationships

Is Dating Worth it as an Autistic Adult?

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

Not Liking People as an Autistic Adult

Self-Identification

So You Think You Might Be Autistic

Dearly Newly Identified Autistic Person

Am I Actually Autistic?

Dearest Smart, Weird, and Caring Autistic

I Am Deeply Unsure About Autism

How to Self Identify Autism as an Adult

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

Where to Start When You First Learn You’re Autistic

6 Strategies to Harness the Hyperfocus Power of an Autistic Mind

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

No Plans Days as an Autistic Tool

Making Accommodations for Myself as an Autistic Adult

How Many Accommodations Can We Ask for as Autistic Adults?

Using Art to Help Your Autistic Mind

Dissociation as an Autistic Tool

The Power of the Home Environment for Autistics

Is It Ok to Honor My Autistic Needs?

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

Therapy for Autistics

Dearest Autistic Client of Mine

8 Ways Therapy Can Help With Late Identified Autism

Gaslighting the Autistic Experience

Dearest Therapist Who Knows Barely Anything About Autism

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

Does Your Therapist Know Enough About Autism to Help You?

Questions to Ask a Potential Therapist When You're Autistic

How I Work with Newly Identified Autistic People

What to Ask When You're Seeking Therapy for Late-Identified Autism

12 Ways Therapy Can Enhance Life for Late Identified Autistic Adults

Therapy is Not for Fixing Autism

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

A Newly Identified Autistic Therapist Working with Newly Identified Autistics

Common Therapy Advice That is Counterproductive for Autistics

A Therapist Told Me Treating Autism is Like Treating Depression

Who Can Diagnose Autism in Adults?

Autistic Adults Deserve Better from the Mental Health Field

Undiagnosed Autism

The Correlation Between Intelligence and Undiagnosed Autism

10 Consequences of a Life with Unidentified Autism

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

Autism Diagnosis Criteria are Limiting for Men Too

No Autistic Should Receive a Diagnosis Letter Like Mine

Identifying Autism in Undiagnosed Women Abstract

How I Identify Autism in Undiagnosed Women

Autistic Stereotypes Block People From Knowing They're Autistic

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

Recent Posts

My Autistic Sensory System is a Demanding, Bougie Princess

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This Autistic is Quitting the News

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Autism Spectrum Disorder (ASD) Essay

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

Introduction

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

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

Biological and genetic aspects of autism Spectrum Disorders

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

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

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

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

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

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

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

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

A diagram showing brain structures linked to ASD

ASD Etiology

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

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

Prevalence of ASD

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

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

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

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

Diagnosis of ASD

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

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

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

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

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

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

Comprehensive Diagnostic Evaluation

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

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

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

Treatment of ASD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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IvyPanda. (2022, December 2). Autism Spectrum Disorder (ASD). https://ivypanda.com/essays/autism-spectrum-disorder-asd/

"Autism Spectrum Disorder (ASD)." IvyPanda , 2 Dec. 2022, ivypanda.com/essays/autism-spectrum-disorder-asd/.

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IvyPanda . 2022. "Autism Spectrum Disorder (ASD)." December 2, 2022. https://ivypanda.com/essays/autism-spectrum-disorder-asd/.

1. IvyPanda . "Autism Spectrum Disorder (ASD)." December 2, 2022. https://ivypanda.com/essays/autism-spectrum-disorder-asd/.

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IvyPanda . "Autism Spectrum Disorder (ASD)." December 2, 2022. https://ivypanda.com/essays/autism-spectrum-disorder-asd/.

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