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• Review Article
• Published: 05 September 2022

A capabilities approach to understanding and supporting autistic adulthood

• Elizabeth Pellicano   ORCID: orcid.org/0000-0002-7246-8003 1 , 2 ,
• Unsa Fatima 1 ,
• Gabrielle Hall 1 ,
• Melanie Heyworth 1 , 3 ,
• Wenn Lawson 1 ,
• Rozanna Lilley   ORCID: orcid.org/0000-0001-6143-8805 1 ,
• Joanne Mahony 1 &
• Marc Stears 4  

Nature Reviews Psychology volume  1 ,  pages 624–639 ( 2022 ) Cite this article

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• Autism spectrum disorders

There is little comprehensive research into autistic adulthood, and even less into the services and supports that are most likely to foster flourishing adult autistic lives. This limited research is partly because autism is largely conceived as a condition of childhood, but this focus of research has also resulted from the orthodox scientific approach to autism, which conceptualizes autistic experience almost entirely as a series of biologically derived functional deficits. Approaching autism in this way severely limits what is known about this neurodevelopmental difference, how research is conducted and the services and supports available. In this Review, we adopt an alternative research strategy: we apply Martha Nussbaum’s capabilities approach, which focuses on ten core elements of a thriving human life, to research on autistic adulthood. In doing so, we identify areas where autistic adults thrive and where they often struggle, and highlight issues to which researchers, clinicians and policymakers should respond. The resulting picture is far more complex than conventional accounts of autism imply. It also reveals the importance of engaging autistic adults directly in the research process to make progress towards genuinely knowing autism and supporting flourishing autistic lives.

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Introduction.

Autism is a lifelong neurodevelopmental difference that influences the way a person interacts and communicates with others and experiences the world around them 1 . For decades, autism research focused predominantly on autistic children 2 , in line with the very earliest descriptions of autism 3 , 4 and the tendency for society to depict autism as a disability of childhood 5 . The result is a substantial lack of understanding about the opportunities and challenges that autistic adults face in building their futures, achieving their goals and living satisfying and fulfilling lives. These issues clearly matter, however, and in the past decade there has been an increase in publications on autistic adulthood, a new journal specifically dedicated to autism in adulthood, a notable increase in funding dedicated to adult-related issues 6 and numerous policy interventions designed to assist autistic adults to live good lives 7 .

Serious obstacles nevertheless continue to prevent researchers, clinicians, educators, policymakers and the broader public from fully grasping the nature of contemporary autistic adulthood. Overcoming these obstacles is vital not only because they constrain understanding but because they also hinder efforts to inform and transform the services and supports that might enhance autistic adults’ lives.

Paramount among these obstacles is the orthodox approach taken in conventional autism research, in which there is an overfocus on ‘deficits’ or ‘impairments’ of autistic adulthood and an overemphasis on specific attributes of individuals as opposed to the broader contexts in which autistic adults live 8 , 9 . This conventional research paradigm derives both from long-standing conventions in medicine, which prioritize a putatively objective standard of ‘bodily health’ over a subjective understanding of ‘well-being’ 10 , and from the developmental psychopathology literature, which stresses the importance of ‘patterns of maladaptation’ in shaping the life course of autistic people 11 . Consequently, individual autistic adults’ behavioural, cognitive and neural functionings are frequently compared with some typical or ‘normal’ level of ability that is held as the ideal ‘state of health’ 9 ; interventions and treatments typically aim to remediate these apparent shortcomings to align functioning with the accepted norm. This narrow focus on deficits results in a radically constrained understanding of the experiences that shape autistic lives, limiting the range of supports and services to those that seek to ‘change the individual’ rather than consider how to ‘change the world’. Conventional research efforts are also routinely conducted without meaningful input from autistic people themselves 12 , meaning that often the wrong questions are posed and findings are misinterpreted. Research of this kind can be said to be ‘lost in translation’ 13 . As such, most research on autism prioritizes researcher-defined normative life goals without discovering how much they matter to a diverse range of autistic people 14 , 15 .

In this Review, we — a team of autistic and non-autistic researchers — propose an alternative way of approaching adult autism research. First, we provide some context by briefly discussing the diagnosis and developmental trajectories of autistic adults. Next, we describe Nussbaum’s capabilities approach 16 , 17 , which outlines ten central capabilities that enable people, whether autistic or non-autistic, to lead lives that are of value to them on their own terms rather than to meet a predetermined normative standard set by others. We then examine each of the ten capabilities in the context of available autism research. This approach enables us to evaluate the opportunities and challenges facing autistic adults, the forces shaping them and the ways in which services and other interventions might enhance the quality of their lives.

Diagnosis and developmental trajectory

Adult diagnosis of autism first became available in the 1980s (ref. 18 ) and was further encouraged by changes in the Diagnostic and Statistical Manual of Mental Disorders , fifth edition (DSM-5) (refs. 1 , 19 ) several decades later. Many autistic adults initially seek their diagnosis following concerns about social relationships and mental health, sometimes precipitated by a personal crisis or by the diagnosis of their own children. For many, this search for diagnostic clarity is preceded by decades of feeling ‘different’ and of relationship or employment difficulties 20 , 21 . Challenges to adult autism diagnosis are discussed in Box  1 .

A growing number of adults self-identify as autistic without a formal diagnosis 22 . This self-identification is controversial in research and clinical communities but is often accepted in the autistic community, in part because, even in high-income countries, autistic adults often remain undiagnosed 2 , 23 , 24 and, even when formally diagnosed, are only minimally supported 2 , 7 , 23 , 24 , 25 . Those diagnosed later in life may have higher self-reported autistic traits and poorer quality of life, especially mental health, than those diagnosed in childhood 26 .

Following the normative tendencies of the conventional approach to autism research, the vast majority of studies that have examined the developmental trajectories of autistic adults diagnosed in childhood focus on areas thought to be critical for achieving ‘good’ adult outcomes. In longitudinal studies, these outcomes are often defined in terms of a set of standard ‘life achievements’, on which autistic adults typically fare badly 14 , 15 . For example, autistic adults with and without intellectual disability followed from childhood are less likely than non-autistic people to hold down a job, live independently or have friends and intimate relationships 2 , 14 , 15 . Other longitudinal studies have examined whether people remain ‘autistic’ (that is, meet instrument and/or clinical thresholds for autism) as they move from childhood into adulthood. These studies show that the diagnostic status of individuals diagnosed in childhood generally endures into adulthood 15 , 27 , with the exception of a minority of individuals who no longer display sufficient core autistic features to warrant a clinical diagnosis, which is sometimes described as an ‘optimal outcome’ 28 . Yet despite initial variability, many people show little change in researcher-defined ‘autistic symptoms’ as they move into adulthood 29 , potentially placing them at greater risk for poor psychosocial outcomes in adulthood 30 .

More detailed research on the quality of life of autistic adults also largely focuses on the achievement of standard life outcomes, irrespective of whether those outcomes are considered meaningful by autistic adults themselves 31 , 32 . Studies that have complemented standard, researcher-defined measures with more subjective, autistic person-led measures (such as quality of life) consistently demonstrate that outcomes are more positive when subjective factors are accounted for 14 , 15 . For example, an autistic person who is highly dependent on others for their care — a so-called ‘poor outcome’ according to the standard framework — might nevertheless be happy and subjectively enjoy a very good quality of life. Another autistic person who no longer meets the diagnostic criteria for autism — a so-called ‘good’ outcome — might struggle to find their way in the world and feel different and distant from others. Approaches that focus on researcher-defined measures in this way limit understanding and risk failing to grant autistic people the dignity, agency and respect they deserve.

In considering how to respond to these limitations, it is helpful to establish two clear aims. First, research into autistic adulthood must recognize that people’s life chances (opportunities each individual has to improve their quality of life) are shaped by a range of factors beyond the person, consistent with an ecological perspective 33 . That is, quality of life is influenced both by biological factors at the heart of the conventional medical model and a broader set of contextual factors as stressed by the social model of disability 34 . Second, no one, autistic or not, has high quality of life if their life goals are primarily set by others. Thus, quality of life should not be measured by a standard set of outcomes judged to be important by researchers, clinicians or policymakers. Instead, the goals of each individual’s varied human life should be at least partly set by the person themselves 35 .

Box 1 Challenges for autism diagnosis in adulthood

In most countries, adults seeking an autism assessment and diagnosis face severe challenges, and the individual is expected to initiate and navigate the process 24 . Although there are published guidelines 7 , 294 , major differences exist between guidelines and actual experience 295 . Adults seeking diagnosis report lengthy waiting times and prohibitive costs 2 , 24 , and encounter clinicians who lack a nuanced understanding of autism 75 , 174 . Further, the guidelines are far from standardized in their recommendations for the use of adult diagnostic tools and there is much variation in practice 2 , 7 , 294 .

The process of adult autism diagnosis is also challenging owing to difficulties in recovering early developmental history and the self-reported tendency of many autistic adults to use strategies (masking or camouflaging) to minimize autistic features 274 , 275 . Although autistic adults of all genders have been reported to mask 275 , it is more often reported among women 296 , which could be one reason why twice as many men present to adult diagnostic services 297 . These findings dovetail with a growing recognition of gender bias in autism diagnosis 2 , 7 .

More research concerning adult autism diagnosis is needed. For example, little is known about the diagnostic experiences of autistic adults with intellectual disability 24 , about how autism is identified in different cultural contexts or about adult autistic experiences in the Global South 298 . It is likely that autistic adults in many low and middle-income countries do not have access to formal diagnosis, post-diagnostic supports or the positive transformations in self-understanding and connections to a peer community that often accompany diagnosis 181 , 217 , 261 .

A capabilities approach to autistic lives

Martha Nussbaum’s 16 , 17 capabilities approach to quality of life, which has been widely used to analyse social disadvantage in multiple settings, satisfies both of the aims outlined above. First, according to the capabilities approach, a human ‘capability’ is not an intrinsic ability that a person has or does not have solely by virtue of who they are. Instead, ‘capability’ refers to the actual opportunity to be or do something that is facilitated or constrained by features of the person and by the broader contexts in which a person is embedded. The relevant contexts can include close family and household influences; everyday community interactions; educational institutions; economic factors, including the cost of living; services and supports, including accessibility and performance of healthcare institutions; and the broader social and political context, including social attitudes towards autism. Second, flourishing human lives are characterized by a set of these capabilities which enable a person to achieve any number of a range of outcomes, rather than by the attainment of a small number of pre-specified outcomes. These capabilities are considered foundations for a range of doings and beings; they shape what a person can do and, critically, who and how they can be in the world. Capabilities are not a narrow or specific set of achievements, nor are they possessions. Similarly, capabilities cannot be ranked or interpreted by a group of people, such as professionals, or reduced to a single score on a standardized scale. Instead, they refer to the preconditions for a broad range of ways of living.

According to Nussbaum, there are ten central capabilities that most people need if they are to be able to choose and create lives that are meaningful and fulfilling on their own terms 16 , 17 (Table  1 ). In what follows, we outline how analysing the life chances of autistic adults through this lens can enable a far richer understanding of autistic adults’ lives of all abilities (see Box  2 ) than the conventional research approach. We do so by highlighting the strengths and challenges of autistic adults in each of the ten central capabilities, and their causes, and consider the potential supports, services and changes in societal attitudes that might help to transform those challenges into strengths. Analysing these capabilities provides a way to examine the lives of autistic adults without narrow normative judgement, while also directing attention to issues that require intervention and support. Readers are advised that some of this material may be distressing and evoke difficult past associations.

Box 2 Inclusivity and the capabilities approach

The capabilities approach focuses on the real opportunities that are open to each person to live in ways that are meaningful to them. Applying such an approach to research on autistic adulthood enables identification of the ways in which autistic people can thrive on their own terms and the nature of the obstacles to this thriving. Diverging from more conventional medical frameworks, the key to this approach is the value of personal autonomy: the belief that all people, including autistic people, should enjoy the right to be at least ‘part author’ of their own lives 35 and that their quality of life should always be measured, at least in part, according to their own aspirations.

Although widely used in other settings 299 , the capabilities approach is novel in the context of autism, partly because it has previously been suggested that this sort of autonomy-inflected approach is ill-suited to a substantial proportion of the autistic community 300 . Non-speaking autistic people, those with intellectual disabilities and/or those with very high support needs have sometimes been considered unable to communicate or conceptualize their precise wishes in the ways the capabilities approach seems to require. From this perspective, the capabilities approach is applicable only to those who can make and articulate judgements about their own life purposes and not to the entire autistic population.

Some have called for a fine-grained approach to the heterogeneity within autism, suggesting that the autism spectrum should be split into those for whom an autonomy-inflected approach could be appropriately applied and those for whom the traditional medical model may be better suited 300 . Similarly, others have called for the creation of a separate ‘profound’ or ‘severe autism’ diagnostic category for those with the most severe impairments 7 , 301 .

We do not believe that we need to be this pessimistic. There is no clear scientific basis for segmenting the autism spectrum in the way that proponents of a separate ‘severe’ or ‘profound’ autism label suggest. Moreover, doing so poses grave risks, potentially excluding people deemed ‘severe’ or ‘profound’ from the concern, dignity and respect offered to others 302 , 303 . Nonetheless, it is crucial for future research into autistic quality of life to consider people of all abilities. Such research should investigate whether augmentative and alternative communication can enable those with higher support needs to make their needs and desires known 304 . Future research should also examine the effectiveness of available long-term services and supports to enable those with the greatest needs to fulfil key aspects of quality of life. This work would acknowledge the inevitable complexities of deploying the capabilities approach in these instances while recognizing that it remains possible to develop a broad and subtle framework for the evaluation of quality of life across the whole autistic community.

The first central capability is “being able to live to the end of a human life of normal length; not dying prematurely, or before one’s life is so reduced as to be not worth living” 17 . Autistic adults are currently at a substantial disadvantage in this capability. There are persistent patterns of premature mortality in the autistic population 36 , 37 . Autistic people are twice as likely to die prematurely as non-autistic people 36 , 37 , 38 , and this risk is greater for autistic women 36 , 38 (but see ref. 37 ) and those with intellectual disability 36 , 37 , 38 . The lives of autistic people are, on average, 16 years shorter than those of non-autistic people 36 . The risk of death is elevated in autistic people who experience poor physical health or chronic illness (including epilepsy) 36 , 37 , 38 , 39 . Little is known about the influence of social and economic factors, including access to healthcare, on these mortality rates, but it is widely hypothesized that an important contributor is the extent to which physicians listen to, and learn from, their autistic patients 40 .

Among the specific causes of premature mortality, there is a higher risk of suicide 41 , 42 . Suicide attempts are more frequent and more likely to result in death in autistic people than in non-autistic people 36 , 37 , 43 , 44 , 45 , possibly owing to co-occurring psychiatric conditions 36 . Research focused on understanding why autistic people are at increased risk of self-harm and suicide has identified individual risk markers common to those in the general population, including (younger) age 46 , low mood and rumination 47 . More work is needed to understand potentially unique risk markers for increased suicidality in autistic people, including broader interpersonal causes (such as thwarted belonging and perceived burdensomeness) which might mediate associations between autistic traits and suicidality 48 , and systemic issues (such as clinicians’ lack of knowledge 49 ).

More generally, autistic quality of life in older adulthood (adults aged 50 years and older 50 ) — albeit as assessed using normative measures — is seen as considerably poorer than that in non-autistic older adults 51 . Social isolation and loneliness are major issues for all older adults, leading to greater risk of dementia and other serious medical conditions 52 . Both social isolation and loneliness might disproportionately influence older autistic adults, who might be more prone to reclusiveness 53 , despite many autistic adults describing a longing for interpersonal connection 54 . For example, in a study in which autistic adults’ experiences of growing older were elicited, one autistic participant said “I think I’m a born loner, quite frankly … Maybe I’m not the kind of person to have a life. Oh, I’d love it, with a person that would understand me” 54 . There are few longitudinal and participatory studies focusing on autistic older people, including under-represented populations who might have poorer life satisfaction. Thus, little is known about how autistic adults can be supported to live a full and satisfying life into old age in diverse sociocultural contexts 55 , 56 .

Bodily health

The second central capability is “being able to have good health, including reproductive health; to be adequately nourished; to have adequate shelter” 17 . Once again, the evidence suggests that autistic adults are disadvantaged in this regard. Co-occurring physical conditions are common across the autistic lifespan 57 , 58 , 59 and are more prevalent than in the general population for almost all conditions assessed 43 , 58 , 59 , even when lifestyle factors are considered 58 . Autistic adults with intellectual disability have distinctive needs 59 and might be especially vulnerable to poor physical health 60 .

Risks for most physical health conditions are further exacerbated for autistic women 58 , 61 . Understanding the mechanisms for these differences in health outcomes is critical for reducing these inequalities. Moreover, further clarifying the temporal development of these health problems should inform how interventions are designed to prevent and treat them 62 . There are at present very few studies on autistic people’s reproductive health. Autistic women report challenging experiences with menstruation, including a cyclical amplification of sensory differences and difficulties with emotional regulation 63 , 64 , and autistic women are at greater risk for pregnancy complications 65 . Autistic women also report significant deterioration in everyday quality of life during menopause 66 . None of these concerns have yet been investigated in depth. Likewise, there are no studies specifically addressing the reproductive health experiences of autistic men, those with intellectual disability and/or those who are non-speaking; no studies have adopted a less gender-binary approach to reproductive health in autistic adults. This absence of research potentially leaves crucial areas of experience unsupported by clinicians and other policy interventions.

Autistic adults also face barriers to healthcare 67 , 68 , 69 . Despite greater healthcare utilization, medication use and higher healthcare costs than the general population 70 , autistic adults report more unmet health needs 71 , lower utilization of preventative care 71 and more frequent use of emergency departments 71 , 72 than non-autistic adults. Healthcare settings are often inaccessible to autistic adults, with significant risk of sensory and social overwhelm , miscommunication and lack of autistic-informed care 67 , 73 . Autistic people also experience reduced coordination of care compared with non-autistic people, particularly during the transition from paediatric to adult services 74 . Thus, autistic adults are often left to fend for themselves in navigating the healthcare system 75 , resulting in negative healthcare experiences and feelings of distrust 66 , 67 .

Autistic adults also report poor patient–provider communication (in both directions): autistic adults often face difficulties identifying and articulating their physical health symptoms 76 and professionals often do not appreciate the need to adapt their communication style for autistic patients and do not take their autistic patients’ concerns seriously 67 , 68 , 71 . Clinicians’ limited knowledge of 68 , 69 and lack of confidence in 75 understanding autistic adults’ specific needs further exacerbate these difficulties. Some tools have been developed to assess barriers to healthcare access experienced by autistic adults from their own perspective 71 or from their caregiver’s or healthcare provider’s perspective 77 . The person-related, provider-related and system-related barriers identified using these tools should facilitate future research that seeks to improve the care and health of autistic people 71 , 78 . However, research designed in collaboration with autistic people is needed to assess the most effective ways of improving their healthcare experiences 56 , 67 , 78 .

Many other external factors influence autistic adults’ physical health, such as access to affordable, appropriate housing. Initial studies suggest that autistic adults might be over-represented in homeless communities at rates substantially higher (12–18% 79 , 80 ) than adult population prevalence estimates (1% 81 ). The range of challenges facing autistic adults might predispose them to homelessness, and reduced social support networks might compound other risk factors, including unemployment, making it difficult for autistic adults to exit homelessness.

Other housing challenges also influence this crucial capability. Compared with other people with disabilities, autistic adults are less likely to live independently, leaving them vulnerable to the inadequacies of institutionalized housing. Formal institutional living and similar settings that purport to be community-based, but are often only nominally so 82 , have been criticized for displacing people from their families and communities and for providing poor and unresponsive services to residents 83 , 84 . Nonetheless, autistic adults continue to be over-represented in more restrictive and segregated settings 85 .

In sum, the bodily health of autistic adults is severely compromised at present in many regards, owing to failings in clinical provision and in the broader social and economic context within which they must lead their lives.

Bodily integrity

The third capability is that people should be “able to move freely from place to place; to be secure against violent assault; having opportunities for sexual satisfaction and for choice in matters of reproduction” 17 . This capability is underpinned by a person’s right to make decisions about their body.

There are good reasons to be concerned about autistic disadvantage in accessing this capability. Autistic children are at substantial risk of experiencing multiple forms and repeated occurrences of victimization and abuse 86 , and this vulnerability persists into adulthood 87 , 88 , 89 , 90 . In particular, there are elevated rates of sexual victimization in autistic compared with non-autistic adults 89 , 90 , especially in autistic women 91 , 92 , 93 and those who identify as a gender minority 92 or as a member of the LGBTQI+ community 94 . This increased vulnerability might be exacerbated by the fact that autistic people often have reduced access to good quality, effective sexual education 95 , which can impart vital protective knowledge, as well as by broader structural inequalities (for example, lack of access to healthcare 67 , 68 , 69 ).

Autistic adults also experience increased rates of physical assault 87 , 92 and domestic violence, largely perpetrated by people known to them 90 . Autistic women, particularly those who report multiple traumatic experiences, emphasize deeply distressing betrayals of trust 91 and how they often “just couldn’t see it coming” 93 . Worryingly, these already high victimization rates are likely to be an underestimate: autistic adults are less likely to report experiences of violence to the police 87 or even to confide in others 87 . Autistic adults who experience victimization therefore receive neither the requisite mental health support nor the critical social support that could reduce the likelihood of developing post-traumatic symptoms.

Concerns about physical safety also influence the ability to move freely. Many autistic adults want to be able to access work and go about their daily activities within their communities 96 , and parents often want this independence for their children too 96 . Yet both groups worry about safety. Use of public transportation can be challenging for autistic adults owing to lack of accessibility 97 and difficulties with wayfinding and traffic judgement 98 . Furthermore, despite research showing that autistic drivers are more rule-abiding than non-autistic drivers 99 and are no more likely to be at fault for a police-reported car crash 100 , few autistic people take up driving 101 , partly because of perceived difficulties in spatial awareness, motor coordination, processing speed and executive function 96 . Consequently, autistic adults can remain reliant on their parents. As one autistic adult expressed in a focus group on understanding autistic adults’ transportation needs and barriers: “If I want to go shopping in the middle of the day I can’t. I have to wait for my mom to come home from work” 96 .

Finding a balance between autonomy and safety is critical. Autistic children and adults can be more susceptible to wandering 102 , 103 , and parents sometimes advocate the use of measures such as tracking devices 104 . Yet wandering can occur for many reasons 102 and is often purposeful 104 . Researchers and activists warn of the negative impact surveillance technologies can have on people’s independence and urge investment in alternatives such as community supports and safety skills training 104 , 105 .

Bodily integrity is inextricably linked to other capabilities. Violations of bodily integrity have adverse effects on other capabilities 106 , including mental health 107 , bodily health, interpersonal relationships and sense of agency. Threats to bodily integrity are also likely to influence autistic people’s sense of sexual well-being and their freedom to achieve it. Long-held views of autistic people being uninterested in sexual experiences 108 have been firmly quashed by research showing that autistic adults desire sexual relationships to a similar extent as non-autistic adults 109 , 110 . Autistic adults in satisfying relationships are more likely to report greater sexual satisfaction, just like non-autistic adults 111 . They also identify with a wider range of sexual orientations 94 , 109 , 112 and gender identities 113 , 114 , 115 , 116 , their sexual ‘debuts’ occur at a later age 117 and they have fewer lifetime sexual experiences 112 than non-autistic adults. The lack of qualitative studies on the realities of autistic adults’ sexual lives limits understanding, despite the fact that this topic is prioritized by the autistic community 118 .

Senses, imagination and thought

The fourth capability focuses on being “able to use the senses, to imagine, think, and reason — and to do these things in … a way informed and cultivated by an adequate education … being able to use imagination and thought in connection with experiencing and producing [creative] works … Being able to have pleasurable experiences and to avoid nonbeneficial pain” 17 . The dominance of the conventional medical model has meant that autism is often associated with deficits in this regard 119 . There is often a presumption that autistic adults will struggle with higher-order cognition or have low intelligence owing to poor performance on standard intelligence tests 120 . This stereotype persists even though there is little evidence for it in the everyday experience of the autistic population 121 . There is an even greater presumption of low intelligence in autistic people who are non-speaking or do not use traditional forms of communication 122 , who are routinely under-recruited in research 123 . Similarly, researchers, clinicians and educators have long presumed that creative and imaginative skills and aspirations are limited in autistic people 124 .

However, the predominant use of standard intelligence tests can lead to an underestimation of autistic people’s intellectual ability 120 , particularly in non-speaking people 125 . Autistic people have also been shown to excel at producing novel responses on creative tasks 126 and are increasingly recognized for their creative talents 127 , with major companies investing in autistic people’s ‘out-of-the-box’ thinking 128 . These strengths have been linked to autistic people’s different way of perceiving the world, including detail-focused processing style 129 and enhanced perceptual abilities 130 , which might be underpinned by heightened sensory perception 131 .

Nevertheless, autistic people are, in general, poorly served by the educational environments that might further enhance this capability 132 . They regularly encounter sensory overwhelm within the physical school environment 133 , struggle with complex social expectations and interactions 134 , experience bullying and social isolation 135 , and are stigmatized by a presumption of low competence 136 . Moreover, limited attention is given to their specific needs, strengths and preferences 132 , 137 , including by school staff who lack confidence in supporting autistic students 138 . Being excluded from 139 or not completing 140 school can have persisting negative effects on mental health and well-being.

Increasing numbers of autistic adults are enrolling in higher education 141 , but barriers exist there too. Autistic adults rarely receive relevant supports and accommodations, partly because they are hesitant to disclose their diagnosis or find it difficult to reach out for help 141 and partly owing to the absence of formal transition planning 142 . Consequently, autistic adults are at high risk of dropping out of university 143 . There is also limited research on the destinations of autistic students who complete higher education 144 , so it is unclear how to best respond to these challenges.

The senses, imagination and thought capability also emphasizes the importance of being able to take pleasure from sensory experiences. Although research tends to focus on the challenges that autistic sensory differences — such as experiences of sensory overload — bring to people’s everyday lives 145 , sensory stimuli can also be a source of pleasure 146 , 147 . For example, one autistic adult reported enjoying “touching metal a lot … cold smooth metal is, like, just amazing” 147 . There is also evidence that autistic adults with limited spoken communication in a supported living environment find joy in the everyday, for example in the sound of the washing machine on the last spin or the feel of bubbles while dishwashing 146 , 148 .

However, these distinctive sources of pleasure are often pathologized. This is captured by the debate over certain ‘repetitive motor stereotypies’ such as hand-flapping 1 , which have been reclaimed by autistic adults as ‘stimming’ 149 . These behaviours tend to be perceived as an individual problem with no clear purpose or function that prevent the person from learning skills and interacting with others 150 . Stimming behaviours are often the target behaviour for interventions that promote ‘calm’ or ‘quiet’ hands 151 (cf. ref. 152 ). However, there is very little evidence that stimming behaviours are harmful to autistic people or their peers (the same cannot be said for self-injurious behaviours, which might also be purposeful but are nevertheless harmful to the person). In fact, it now seems likely that stimming behaviours can serve as a source of pleasure or reassurance or a form of self-regulation 149 .

The next capability is defined as “[b]eing able to have attachments to things and people outside ourselves; to love those who love and care for us, to grieve at their absence; in general, to love, to grieve, to experience longing … not having one’s emotional development blighted by fear and anxiety” 17 . The empirical literature shows that autistic adults have more difficulties recognizing others’ emotions 153 , 154 and identifying and describing their own emotions (alexithymia) than non-autistic people 155 , 156 . However, emerging work suggests a far more nuanced picture: autistic adults describe feeling emotions and empathy intensely 157 and often experience deeply satisfying emotional lives 158 .

At their most extreme, the conventionally reported difficulties with emotions were thought to preclude autistic people from the capacity to love or desire meaningful romantic and intimate relationships 159 . However, research is inconsistent with this claim 160 . Romantically involved autistic adults report high relationship satisfaction 93 , 161 . The strong bonds that autistic adults report with their partners, particularly with those who are also autistic 160 , extend to their autistic children, with whom they describe an intense connection and love 162 .

These reports speak strongly against an understanding of autism as a ‘disorder’ of affect. Rather than lack of interest, autistic adults often cite significant challenges with initiating and maintaining romantic relationships 154 , including difficulties reading and interpreting others’ emotions 161 , which can impact their capacity to remain romantically involved. The stereotyped assumptions of non-autistic people that autistic people are uninterested in interpersonal relationships might also be an obstacle 163 . These challenges can intensify feelings of loneliness and are linked to significant negative emotional experiences and poor mental health 164 . Autistic adults who desire intimate connection but whose needs are unfulfilled might be at particular risk of depression and low self-worth 164 , 165 .

This loneliness, depression and poor self-perception can take a substantial toll on mental health and well-being 164 , 166 , 167 . A substantial proportion of autistic adults experience a co-occurring psychiatric condition during their lifetime, with anxiety and mood disorders being the most common 168 , 169 . Rates of co-occurring psychiatric conditions are somewhat lower for autistic adults with intellectual disability 170 , but these rates might be underestimated owing to a lack of detailed understanding in how best to characterize and measure mental health in this context 168 . The risk of developing mood disorders increases with age 168 and autistic adults are at elevated risk of developing post-traumatic stress disorder 107 . Some mental health problems in autistic adults have been attributed to everyday discrimination and internalized stigma 171 .

The reliance on mental health assessments and diagnostic criteria that were established in non-autistic people 168 , 172 , 173 and a lack of necessary expertise among health professionals 174 might result in an overestimation or underestimation of mental ill health in the autistic population 173 . Some autistic characteristics might overshadow indicators of mental health conditions (for example, social withdrawal and sleep disturbance are common to both autism and depression), suggesting that co-occurring mental health conditions might go unrecognized 173 , 175 . Similarly, mental health diagnoses might overshadow an autism diagnosis, resulting in misdiagnosis 175 .

Mental health difficulties in autistic adults are likely to be compounded by the inadequacies of formal and informal supports. Autistic adults report a significantly higher number of unmet support needs than the general population 25 , struggle to obtain appropriate post-diagnostic support 176 and face challenges in accessing individually tailored treatment for mental health problems 25 , 176 . As one autistic adult put it: “I haven’t requested any, because people like me don’t get support” 25 . There is a clear need for mental health interventions that are adapted to autistic people’s needs and preferences 176 .

Practical reason

The next capability, practical reason, is defined as “being able to form a conception of the good and to engage in critical reflection about the planning of one’s own life” 17 . The three key elements of this capability — choosing what one wants to do, critically reflecting on that choice and making a plan to realize it — are fundamental to making full use of all the other capabilities.

It is sometimes assumed that people with cognitive disability, including some autistic people, are incapable of practical reason, failing even at the initial task of deciding what it is that they value or desire 177 . Autistic people were traditionally thought to have impaired self-awareness 178 . A substantial minority of autistic adults have co-occurring intellectual disability (29% 179 ) and some do not use speech to communicate 180 , which can make it difficult for others to gain insight into their thinking. However, research demonstrates that autistic people have a deep capacity to reflect on many aspects of the self, regardless of their intellect or communication preferences 181 , 182 .

The practical reason capability also requires people to be able to reflect critically on their choices, and to change their mind. Here, it seems that autistic people might approach decision-making differently to non-autistic people 183 , 184 . Autistic adults make more logically consistent, rational decisions 185 , are more circumspect in their decision-making, sample more information prior to making a decision 186 , are less susceptible to social influence 187 and are more deliberative in their reasoning 188 , 189 .

However, first-hand accounts suggest that such an approach to decision-making can have its disadvantages. For example, autistic people report challenges changing their decisions, especially if the change is unanticipated or requires a shift in routine 190 . Indeed, autistic people’s tendency to focus intensely on topics or objects of interests ( monotropism ) 191 can make it difficult to ‘move on’ or ‘change gears’ 192 . Interrupting activities after such states of flow and difficulties starting new activities (autistic inertia) can lead to pervasive and often debilitating effects on autistic adults 192 , including on their ability to design and execute a plan.

Many of the above skills come under the broader umbrella of executive function (higher-order processes that underpin goal-directed activity and enable individuals to respond flexibly to change and plan their actions accordingly) 193 . Problems with planning, organization and future-oriented thinking are common in autistic adults 189 , are linked to adaptive difficulties 194 , 195 , might be compounded by particular contexts (such as in parenting 196 or the workplace 197 ) and are perceived to be real obstacles to achieving desired outcomes 198 . Interventions and supports that focus on planning and decision-making are scarce, but those that do exist are associated with gains in executive function-related behaviours in real-world settings 199 .

Affiliation

The next capability is “being able to live with and toward others, to recognise and show concern for other human beings, to engage in various forms of social interaction … and having the social bases of self-respect and nonhumiliation; being able to be treated as a dignified being whose worth is equal to that of others” 17 . Simply put, that the person is respected as a social being 17 . Prima facie this might be the capability in which autistic adults might be expected to be at the greatest disadvantage. After all, the term ‘autism’ comes from the Greek autos , meaning both ‘self’ and ‘by itself’, and autistic people are often described as preferring a life of self-isolation 163 . Dominant characterizations suggest that autistic people lack the motivation 200 and/or cognitive building blocks 201 for social interaction, which prevents them from establishing and maintaining the types of reciprocal relationships that are fundamental for this capability.

Research has repeatedly shown that autistic children and adolescents have fewer reciprocal friendships 202 , 203 , are often on the periphery of social networks 202 , 203 and spend less time with their friends outside school than their non-autistic counterparts 204 . Autistic adolescents also report a growing awareness of feeling different from others despite wanting to ‘fit in’ 205 , 206 , and frequently experience social exclusion and bullying 135 , which might exacerbate their challenges in making and keeping friends. These patterns persist into adulthood 207 . It is therefore unsurprising that many interventions in adolescence and early adulthood focus on formal social skills training 208 , 209 , with the aim of equipping autistic people to manage everyday social relationships on their own terms and, thereby, secure this capability.

However, such interventions fail to appreciate that autistic sociality is shaped by the sociocultural context in which people are embedded 208 , 210 , 211 . Autistic people can and do have fulfilling connections with others, even if negotiating those relationships can be challenging 93 . They are drawn to those who accept them for who they are 154 , 159 , 161 and with whom they do not have to mask their autistic ways 212 , 213 . These friendships include (but are not restricted to) autistic-to-autistic interactions 214 , 215 . As one participant reported in a study on autistic adults’ experiences of loneliness and social relationships: “though many of us have only met each other three to four times, it feels as if we have known each other forever. Because all of a sudden you are in a community with someone where you are on the same wavelength … it is a really strong experience” 216 . Such autistic-to-autistic interactions promote self-understanding 181 , 214 , 217 , positive self-identity 217 , 218 and well-being 219 .

Isolation owing to the COVID-19 pandemic has also revealed that autistic people long for social connection in the same way as everyone else, both in terms of close, trusting relationships and fleeting, incidental interactions. As one autistic interviewee said when describing their lockdown experience: “I didn’t realise how important that incidental human contact was to me. It was so incidental that it never really registered on my radar until it was gone” 167 . Autistic people’s need for human connection and the extent to which social isolation plays a role in autistic people’s mental health distress have been underestimated by conventional accounts.

The double empathy problem 220 suggests that there is a misalignment between the minds of autistic and non-autistic people. This misalignment leads to a lack of reciprocity in cross-neurotype interactions and is the source of social communication difficulties between autistic and non-autistic people 221 , 222 . Empirical evidence suggests that non-autistic people have difficulties understanding the minds and behaviours of autistic people 221 , 222 , and that they are unwilling to interact with autistic people on the basis of initial judgements or interactions 221 , 222 , 223 . Thus, non-autistic people also interact less successfully with autistic people, compared with other non-autistic people 224 .

These cross-neurotype interaction difficulties can lead to stereotyping of and discrimination against autistic people. Although non-autistic people tend to deny feeling negatively inclined towards autistic people 225 , autistic people often report experiencing bullying, exclusion and discrimination. Attitudinal research has shown that considerable implicit biases are present, even among non-autistic people who report no explicit biases 226 , suggesting they may be unaware that they have negative attitudes towards autistic people. These implicit, negative biases are likely to be difficult to shift using short-term educational training programmes 227 . Such discrimination and stigma constitute a substantial barrier for autistic people seeking to develop social connections. Discrimination and stigma could be countered by widespread public acceptance campaigns (including those developed with autistic people 228 ), and programmes that increase the number of everyday interactions between autistic and non-autistic people 229 , 230 .

Other species

The eighth capability requires that humans are “able to live with concern for and in relation to animals, plants and the world of nature” 17 . Prominent autistic naturalists (such as Temple Grandin) and environmentalists (such as Greta Thunberg) have captured the public’s attention 231 . Yet there is remarkably little written about autistic people’s connections to nature and non-human animals.

Research with parents of autistic children has revealed that natural elements (such as sand, mud, leaves, twigs and water) can keep children engrossed for extended periods of time 232 . Some autistic children also prefer interacting with animals over inanimate objects and humans 233 , and report strong attachments to pets 234 . Studies have therefore focused on the potential therapeutic benefits of interacting with nature for children, with some purporting to show ‘reduced autistic severity’ or improvements in family functioning following interaction with trained animals 235 .

Research with autistic adults also reveals benefits of interacting with animals and nature 236 . Nature and gardening are two of the interests most reported by autistic adults, particularly women, and the pursuit of these interests is positively associated with subjective well-being 237 . In a study using photovoice methodology , images of natural scenes were frequently included among the photographs shared by autistic adults, demonstrating the importance of nature in contributing to a good autistic life 238 . Autistic adults’ autobiographies reveal the emotional depth of these connections to nature 239 , which some autistic people say offer respite from the intensity of an often inhospitable social world.

The capability of play emphasizes the right to be “able to laugh, to play, to enjoy recreational activities” 17 . This capability is one in which autistic adults might excel. Researchers and clinicians often refer to autistic people’s passions and interests as ‘highly restricted’, ‘perseverative’ or ‘circumscribed’, or as ‘obsessions’ or ‘fixations’, and as differing qualitatively (in content) and quantitatively (in intensity) from the interests of non-autistic people 240 . Yet autistic testimony attests that these passions are often a great source of joy and enjoyment 241 , which situates them within the play capability. Intense interests are common in autistic people 237 , 242 and become more diverse over time 243 . They are not limited to the sciences or computers, as popular stereotypes suggest 244 , but extend broadly to a range of areas 237 , 242 and might be more idiosyncratic in autistic adults with limited spoken language and/or intellectual disabilities 245 .

Autistic adults often view their capacity to pursue their passions as an advantage 181 , 237 , 241 , 246 that can be affirming and have positive implications for identity and self-concept 243 . Indeed, one autistic participant, who once “owned about 15,000 CDs,” celebrated the capacity “to be intense in stuff” 181 . Passions and interests have been likened to experiences of flow 237 , 247 and to monotropism 191 , which are driven by intrinsic (interest and knowledge) rather than extrinsic (prestige or achievement) motivation 237 . Finding others who share similar interests can form the basis of long-lasting friendships 93 . Nevertheless, exceptionally high intensity of engagement may, in some circumstances, negatively impact well-being 237 .

The generally positive effects of engaging in one’s interests also extend to taking part in recreational activities. Autistic adults report relatively high levels of weekly participation in exercise and hobbies 248 . However, they participate in conventional social and recreational activities to a lesser extent than the general population 249 , despite saying these are important to them 250 . Future research should consider the possible reasons for this disparity and the constraints that autistic adults face when engaging in meaningful and satisfying leisure activities. Inaccessible and inhospitable environments might be barriers for autistic adults 251 , and the effectiveness of programmes designed to support such participation appear to be limited 251 , 252 . Enhancing the play capability is important because engaging in recreational activities might buffer the relationship between perceived stress and quality of life 253 .

Control over one’s environment

The final capability emphasizes the importance of “being able to participate effectively in political choices that govern one’s life … being able to hold property and having property rights on an equal basis with others; having the right to seek employment on an equal basis with others; having the freedom from unwarranted search and seizure” 17 .

There is virtually no research on autistic adults’ engagement in mainstream political processes. Individuals with intellectual disability are less likely to vote than the general population 254 , especially if they live in supported accommodation rather than with family 255 . They often lack support and accessible information for political engagement 255 , 256 and are even explicitly told they cannot vote due to their intellectual disability 256 . More research is needed on autistic citizenship to identify precisely how these obstacles can be overcome 256 .

Extant data suggest that autistic people might be more politically disengaged than non-autistic people. This suggestion stands in contrast to high-profile autistic activists and political commentators, such as Australia’s Grace Tame and Eric Garcia from the United States, and increasing autistic involvement in self-advocacy since the 1990s. The autistic self-advocacy movement grew out of the self-advocacy efforts of people with intellectual and developmental disabilities in the United States and the United Kingdom 257 , and is perhaps epitomized most by Jim Sinclair’s 258 foundational essay (‘Don’t Mourn For Us’) which implored parents not to see their autistic child as a tragedy but, instead, to embrace their differences. Autistic and neurodiversity activists now promote individual self-advocacy, harnessing self-understanding and knowledge to ensure that individuals have greater control over their own lives. Such individual self-advocacy is complemented by collective advocacy, sometimes led by organizations run by and for autistic people (for example, Autistic Self-Advocacy Network ), where autistic people collectively campaign on a range of issues 259 , 260 and come together in dedicated autistic spaces and events 261 . Consequently, self-advocates have begun to shift conceptions of autism from a disorder that needs to be eradicated, prevented or ‘fixed’ to a distinct way of being, which demands acceptance and emphasizes human rights and a positive autistic identity and culture 261 , 262 , 263 , 264 , 265 , 266 , 267 .

There is much for autistic self-advocates to campaign about. Autistic people’s opportunities are constrained by others’ unjustified assumptions about their capacity 268 . Autistic adults are at far greater risk of prejudice, stigmatization and discrimination in many facets of their lives, such as education 141 , 269 , health 40 , 72 , care 270 , intimate relationships 271 , community 171 , justice 272 and work 273 . Moreover, to navigate a world that is not typically set up for them, autistic adults often (consciously or unconsciously) hide or mask aspects of their autistic self 274 , 275 to keep themselves safe or adjust their abilities through ‘compensation’ 276 . Such adaptation can come at serious personal cost, including poor mental and physical health 277 , 278 , negative self-perceptions 275 , 278 and autistic burnout 279 , 280 .

Work provides a particularly constrained environment. Autistic people face substantial challenges in gaining and sustaining meaningful employment, even relative to other disabled people 281 , 282 , 283 , despite possessing a range of skills that might be prized by employers 127 , 246 , 282 , 283 . Autistic adults who do obtain employment are often in positions that fail to match up with their abilities (malemployment) or for which they are overqualified (underemployment) 284 . They can also face challenges maintaining employment 285 , owing to inhospitable work environments 286 , negative experiences with (and sometimes bullying by) colleagues 281 , failure to have their needs and preferences met 287 , and experiences of discrimination, including following the disclosure of an autism diagnosis 288 . There is growing interest in paid short-term autism-specific employment programmes or internships, which are designed to reduce barriers to employment for autistic jobseekers, introduce them to workplace life and provide training in job-relevant skills 289 , 290 . These initiatives show promising effects on autistic trainees’ occupational self-efficacy 289 , 290 but deserve sustained attention to determine whether they help autistic adults to secure and maintain suitable employment in the longer term. Research is also needed on what constitutes a successful employment outcome according to autistic people themselves, and how it should be measured 291 .

Summary and future directions

Autistic people deserve to live long, healthy and creative lives of their own design. Just like all people, they need to be equipped with a set of fundamental capabilities to do so. In this Review, we have examined the lives and life chances of autistic adults through Nussbaum’s capabilities 16 , 17 lens. Doing so allows us to escape the narrowly normative focus on specific life outcomes and to consider the broader foundations for a range of possible good autistic lives. When approached in this way, the literature suggests that there are some capabilities in which autistic people have the potential to excel despite conventional stereotypes to the contrary, such as emotions, affiliation, play, connections to other species, practical reason and control over one’s own environment. At the same time, the literature suggests that in these capability areas and others (especially life, bodily health and integrity), autistic adults are often constrained by a range of social, economic and other environmental disadvantages and barriers, which prohibit them from enjoying a good life that they have the right to expect.

This Review suggests two clear directions for future research. First, it will be important for researchers to more clearly identify these externally shaped disadvantages and find ways to alleviate them. That is, once researchers are collectively equipped with a fuller understanding of what currently prevents autistic adults from enjoying a particular capability, they should be able to begin the task of removing those constraints so that further opportunities are provided. Second, it will be equally important to encourage autistic people themselves to reflect further on the capabilities to which they aspire and the obstacles which they believe obstruct them. The capabilities reviewed here are only a starting point and further amendment might be needed to capture the breadth and specificity of autistic experience (see ref. 292 ). Determining what autistic capabilities to add to this list can be resolved only through research that is genuinely participatory (see Box  3 ); that is, research that places the interests of autistic adults first and takes their own experience and expertise as seriously as any other input.

Box 3 New agendas and approaches to autism research

Despite the large literature on autism since it was first identified in the 1940s, this research generally does not have a positive, meaningful impact on the day-to-day lives of autistic people and their allies. There has been an extensive focus on underlying biological questions and relatively little research on the design of services and supports, the social contexts within which autistic people live or the policy settings that influence their quality of life. Through advocacy and other means, autistic people are increasingly making it clear that they are dissatisfied with this mix and, in line with the emphases of the capabilities approach, want the massive public investment in autism research to provide a greater direct return 305 . They want to address the imbalance in current autism research: research that has a direct impact on the daily lives of autistic people should be valued as much as research on the underlying biology and causes of autism 306 .

Crucially, autistic people also want to have greater input into research decisions 307 , 308 , 309 . Autism research has traditionally been designed and conducted by non-autistic people. Autistic people, their family members and even practitioners have rarely been involved in the decision-making processes that shape research and its application 12 , 13 , beyond being passive research participants. This limited involvement in research has begun to change in the past decade. There is a slow but growing movement towards collaborating with autistic people and their allies as part of the research process, such that autistic researchers and community members are actively involved in making decisions about research 308 , 309 . These decisions can include what kind of research is done, how it is done, how research results are interpreted and how the findings are used.

Such participatory research has a long history outside autism research 310 . In these contexts, participatory processes that draw on the ‘practical wisdom’ of non-scientists have been shown to have a dramatic effect on both the research agenda and the effectiveness of the research 311 . Participation itself can take many forms, ranging from being a consultant on a research project to sitting on a formal advisory board, being a full collaborative partner or even leading projects. The critical issue in participatory research is who makes the research decisions. In research involving community members only to a minimal extent (for example, through consultation), the researchers are typically in control. When that involvement deepens, researchers relinquish control to share decision-making power with community members.

There are some excellent examples of autism research that uses participatory approaches 40 , 181 , 312 , 313 , but it is still very much in its infancy. Although there is much enthusiasm for involving autistic people in the decisions that influence them 314 , 315 , researchers can be worried about how time-consuming participatory research can be, can find it hard to relinquish control in research decision-making and worry that community members might introduce bias into otherwise rigorous research processes. These concerns could lead to tokenism when community involvement is attempted 312 . Instead, researchers and community members need to appreciate that they each have different ‘experiential expertise’ 316 ; they must take that expertise seriously to enable valuable insights for those involved in the research and for the research itself 317 .

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Acknowledgements

The authors thank L. Crane, J. Lowe and D. Tan for their extremely helpful comments on a previous version of this manuscript. This work has been funded through an Australian Research Council Future Fellowship awarded to E.P. (FT190100077). The views expressed are the views of the authors alone and do not necessarily represent the views of their organizations or funding sources.

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This Review was a collaboration between non-autistic researchers (E.P., U.F., R.L. and M.S.) and autistic researchers (G.H., M.H., W.L. and J.M.), who all actively participated in making decisions about the Review. E.P. and M.S. identified the theoretical framework in discussion with U.F., G.H., M.H., W.L., R.L. and J.M.; E.P., U.F., G.H., M.H., W.L., R.L. and J.M. identified the search terms; U.F. and E.P. conducted the literature searches. All authors identified areas of interest from across and within the capabilities and read and reflected on the existing literature in those areas, focusing in particular on the aspects of relevant papers that were least and most compelling and the next steps for research. E.P. and M.S. wrote the original draft of the manuscript. All authors contributed to reviewing and editing the manuscript. The analytic approach was informed by the authors’ training in education (E.P., U.F. and R.L.), psychology (E.P. and W.L.), anthropology (R.L.), nursing (G.H.), history (J.M.) and political philosophy (M.S.), as well as positionalities as autistic researchers and advocates (G.H., M.H., W.L. and J.M.). These participatory processes ensured that the Review was approached through a strengths-based, rather than deficits-based, lens.

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Correspondence to Elizabeth Pellicano .

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E.P. reports grants from the Australian Government Department of Education, Skills and Employment, the Australian Research Council, Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program, Australia’s National Health and Medical Research Council, Australia’s Cooperative Research Centre for Living with Autism (Autism CRC) and Simons Foundation Autism Research Initiative, and has received honoraria for invited talks from the International Society for Autism Research and Aspect Australia. G.H. reports grants from the Australian Government Department of Education, Skills and Employment, and sits on the Board of Directors for Amaze, the peak organization for autistic people and their families in Victoria, Australia, and the Disability Advisory Council for Australia’s Victorian State Government, for which she receives meeting attendance payments. M.H. is CEO of the not-for-profit organization Reframing Autism Ltd and co-chair of the Australasian Autism Research Council (unremunerated), and reports grants from the Australian Government Department of Education, Skills and Employment, and Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program. W.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. He is a member of the Australasian Autism Research Council (unremunerated), a participant and advisor for Autism CRC and an ambassador for the I CAN Network, and receives royalties from books and occasional fees for workshop and invited addresses. R.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. M.S. reports grants from the Paul Ramsay Foundation and from the University of Sydney, is an Associate Fellow at the Said Business School, Oxford and assists fundraising efforts with various philanthropic groups in his role as Director of the UCL Policy Lab. All other authors declare no competing interests.

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A term used by autistic people to describe a state caused by excessive sensory or social stimulation.

A state that occurs when a person’s sensory system becomes overwhelmed, possibly owing to difficulties processing and integrating perceptual information, causing significant distress.

When a person accepts negative stereotypes about autism and applies them to themselves.

A cognitive theory of autism, which suggests that the primary feature of autism is a tendency for a singular attentional focus.

An optimal state in which a person becomes fully immersed in an activity, resulting in intense concentration, creative engagement and the loss of awareness of time and self.

A qualitative research methodology in which participants take photographs to illustrate, and possibly prompt discussion of, their experiences.

A community-driven term describing a highly debilitating condition involving exhaustion, withdrawal, executive function problems and generally reduced functioning, with increased manifestation of autistic traits.

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Pellicano, E., Fatima, U., Hall, G. et al. A capabilities approach to understanding and supporting autistic adulthood. Nat Rev Psychol 1 , 624–639 (2022). https://doi.org/10.1038/s44159-022-00099-z

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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.

• Introduction
• Conclusions
• Article Information

On the x-axis, negative values indicate additional cost and positive values indicate cost savings. Dollars are expressed as Australian dollars. The vertical dashed line indicates the break-even point.

eAppendix 1. Remit of the Australian National Disability Insurance Scheme (NDIS)

eAppendix 2. Training and Supervision Costs for 4 Clinicians to Deliver the iBASIS–Video Interaction to Promote Positive Parenting (iBASIS-VIPP) Intervention to 50 Children Across 2 Sites

eAppendix 3. One-way Sensitivity Analysis at Age 12 Years

eAppendix 4. One-way Sensitivity Analysis at Age 12 Years: Tornado Graphs

eAppendix 5. Probabilistic Sensitivity Analysis: Input to the Model in TreeAge Pro (Linked to the Model)

eAppendix 6. Probabilistic Sensitivity Analysis: Decision Tree Image at Age 12 Years

eAppendix 7. Probabilistic Sensitivity Analysis: Variables Embedded in the Decision Tree

eAppendix 8. Probabilistic Sensitivity Analysis: Distribution Function Embedded in the Decision Tree

eAppendix 9. Probabilistic Sensitivity Analysis: Summary Results at Age 12 Years

eAppendix 10. Probabilistic Sensitivity Analysis: Iteration Results at Age 12 Years

eAppendix 11. Probabilistic Sensitivity Analysis: Net Cost Savings

Data Sharing Statement

• Errors in Conflict of Interest Disclosures JAMA Network Open Correction April 5, 2024

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Segal L , Green J , Twizeyemariya A, et al. Estimated Therapy Costs and Downstream Cost Consequences of iBASIS–Video Interaction to Promote Positive Parenting Intervention vs Usual Care Among Children Displaying Early Behavioral Signs of Autism in Australia. JAMA Netw Open. 2023;6(4):e235847. doi:10.1001/jamanetworkopen.2023.5847

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Estimated Therapy Costs and Downstream Cost Consequences of iBASIS–Video Interaction to Promote Positive Parenting Intervention vs Usual Care Among Children Displaying Early Behavioral Signs of Autism in Australia

• 1 Health Economics and Social Policy Group, Allied Health and Human Performance, University of South Australia, Adelaide, Australia
• 2 Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, United Kingdom
• 3 Department of Psychology, Counselling and Therapy, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia
• 4 Division of Psychology and Mental Health, University of Manchester, Manchester, United Kingdom
• 5 Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia
• 6 La Trobe Rural Health School, La Trobe University, Bendigo, Victoria, Australia
• 7 Menzies Health Institute Queensland, Griffith University, Brisbane, Australia
• 8 Telethon Kids Institute, University of Western Australia, Nedlands, Australia
• Correction Errors in Conflict of Interest Disclosures JAMA Network Open

Question   Is iBASIS–Video Interaction to Promote Positive Parenting (iBASIS- VIPP) therapy, a preemptive intervention for infants displaying early behavioral signs of autism, a good societal investment from a third-party payer perspective?

Findings   In this economic evaluation of 89 children with follow-up data from an iBASIS-VIPP randomized clinical trial in Australia, the intervention was estimated to cost A $5131 (US $3607) per child and deliver a cost savings of A $10 695 (US $7519) per child (modeled to age 12 years). In addition, for each dollar invested in treatment, the savings in third-party payer costs was estimated to be A $3.08 (US $3.08).

Meaning   These findings suggest that improvement in child developmental outcomes in the iBASIS-VIPP trial was achieved at an expected net cost savings to the Australian government and that iBASIS-VIPP is a likely good-value societal investment.

Importance   The growing global prevalence of autism spectrum disorder (ASD) is associated with increasing costs for support services. Ascertaining the effects of a successful preemptive intervention for infants showing early behavioral signs of autism on human services budgets is highly policy relevant.

Objective   To estimate the net cost impact of the iBASIS–Video Interaction to Promote Positive Parenting (iBASIS-VIPP) intervention on the Australian government.

Design, Setting, and Participants   Infants (aged 12 months) showing early behavioral indicators of autism were recruited through community settings into the multicenter Australian iBASIS-VIPP randomized clinical trial (RCT), a 5- to 6-month preemptive parent-mediated intervention, between June 9, 2016, and March 30, 2018, and were followed up for 18 months to age 3 years. This economic evaluation, including cost analysis (intervention and cost consequences) and cost-effectiveness analyses of iBASIS-VIPP compared with usual care (treatment as usual [TAU]), modeled outcomes observed at age 3 through to 12 years (13th birthday) and was conducted from April 1, 2021, to January 30, 2023. Data analysis was conducted from July 1, 2021, to January 29, 2023.

Exposures   iBASIS-VIPP intervention.

Main Outcomes and Measures   To project the diagnostic trajectory and associated disability support costs drawing on the Australian National Disability Insurance Scheme (NDIS), the main outcome was the differential treatment cost of iBASIS-VIPP plus TAU vs TAU and disability-related government costs modeled to age 12 years, using a clinical diagnosis of ASD and developmental delay (with autism traits) at 3 years. Costs were calculated in Australian dollars and converted to US dollars. Economic performance was measured through the following: (1) differential net present value (NPV) cost (iBASIS-VIPP less TAU), (2) investment return (dollars saved for each dollar invested, taking a third-party payer perspective), (3) break-even age when treatment cost was offset by downstream cost savings, and (4) cost-effectiveness in terms of the differential treatment cost per differential ASD diagnosis at age 3 years. Alternate values of key parameters were modeled in 1-way and probabilistic sensitivity analysis, the latter identifying the likelihood of an NPV cost savings.

Results   Of the 103 infants enrolled in the iBASIS-VIPP RCT, 70 (68.0%) were boys. Follow-up data at age 3 years were available for 89 children who received TAU (44 [49.4%]) or iBASIS-VIPP (45 [50.6%]) and were included in this analysis. The estimated mean differential treatment cost was A $5131 (US $3607) per child  for iBASIS-VIPP less TAU. The best estimate of NPV cost savings was A $10 695 (US $7519) per child (discounted at 3% per annum). For each dollar invested in treatment, a savings of A $3.08 (US $3.08) was estimated; the break-even cost occurred at age 5.3 years (approximately 4 years after intervention delivery). The mean differential treatment cost per lower incident case of ASD was A $37 181 (US $26 138). We estimated that there was an 88.9% chance that iBASIS-VIPP would deliver a cost savings for the NDIS, the dominant third-party payer.

Conclusions and Relevance   The results of this study suggest that iBASIS-VIPP represents a likely good-value societal investment for supporting neurodivergent children. The estimated net cost savings were considered conservative, as they covered only third-party payer costs incurred by the NDIS and outcomes were modeled to just age 12 years. These findings further suggest that preemptive interventions may be a feasible, effective, and efficient new clinical pathway for ASD, reducing disability and the costs of support services. Long-term follow-up of children receiving preemptive intervention is needed to confirm the modeled results.

Autism spectrum disorder (ASD; autism) is the term for a neurodevelopmental disability characterized by qualitative and lifelong challenges in social interaction and communication as well as the presence of repetitive and sensory behaviors and interests. 1 Autistic individuals can face barriers to their social and economic participation and well-being. 2 Impacts vary but can include effects on educational and vocational attainment, mental health, and family functioning. 3 , 4

Many countries, including Australia, have reported a marked increase in ASD diagnoses over recent decades, with global prevalence estimates of 1.2% to 2%. 5 , 6 Internationally, ASD is a primary cause of years lived with disability (YLD) and is responsible for greater YLD in children than conduct disorder and attention-deficit/hyperactivity disorder combined. 7 Among male individuals aged 5 to 14 years, ASD ranks in the top 3 causes of YLD in Australia. 8 As of March 2022, children with an ASD diagnosis made up 54% of all children receiving support through the Australian National Disability Insurance Scheme (NDIS). 9 The NDIS was established and funded by the Australian government to provide persons with a disability with access to a wide range of services and support related to daily living and to build capacity to encourage independence (eAppendix 1 in Supplement 1 ). Support can include capital works, technology, and services.

The disability associated with ASD has cost implications for families 10 and may result in extra government spending on health, education, disability services, and income support. The nature and cost of support services depends on the age of the autistic individual and the level of disability. During childhood, costs are largely associated with the provision of services to support early skill learning, nurture child well-being, and minimize environmental barriers for the child and family. In late adolescence and adulthood, services are commonly required to support employment, independent living, and other community participation activities. 11 The lifetime support costs for an autistic individual have been estimated at $1.4 million in the US and at £0.92 million (US $1.4 million) in the UK. When an intellectual disability is also present, these costs increase to an estimated $2.4 million and £1.5 million (US $2.2 million), respectively (all at 2011 unit costs). 12

A challenge for health and disability systems globally is how to apportion finite funding to best support persons with a disability, including autistic individuals, and their families. Optimization of resource allocation requires an understanding of both the efficacy and efficiency (benefits vs costs) of potential interventions, especially to inform when to intervene. The typical clinical pathway for autistic children is to commence the delivery of interventions at the time of diagnosis. Autism emerges in early development, but diagnosis mostly occurs in the late preschool years worldwide. 13 A new clinical model has recently emerged that commences therapies before diagnosis, when the earliest signs of autism may be present and before full presentation of a diagnosed phenotype. Known as preemptive intervention, this early service response seeks to take advantage of the period of rapid brain development in the first 2 years of life 14 to improve developmental outcomes across childhood.

The iBASIS–Video Interaction to Promote Positive Parenting (iBASIS-VIPP) intervention is one such preemptive approach that seeks to support infant development by using video feedback techniques to increase caregiver awareness of their infant’s social communication and to guide caregiver responses to build infant social engagement and interaction. 15 Program evaluation has followed a structured process—an initial determination of acceptability to parents and infants, 15 followed by a randomized clinical trial (RCT) with 53 infants at increased familial likelihood of ASD. 16 The RCT results published in 2017 reported a substantial reduction in ASD-related behaviors to follow-up at age 3 years among the cohort who received iBASIS-VIPP in infancy. 16

A second trial of iBASIS-VIPP 17 was conducted in Australia, the results of which were published in 2021, 18 in which the intervention was delivered in the home. This trial tested the efficacy of the intervention in a larger sample of 103 infants with clinical indications showing early behavioral signs of autism assessed via the Social Attention and Communication Surveillance tool. 19 Recruitment occurred through community settings in Melbourne and Perth, Australia, between June 9, 2016, and March 30, 2018. Nineteen percent of the infants had an older sibling with ASD and 70 (68.0%) were boys. The mean (SD) age was 12.4 (1.9) months for the iBASIS-VIPP intervention group vs 12.38 (2.0) months for the group that received treatment as usual (TAU). Treatment effects replicated those of Green et al, 16 with a substantial reduction in ASD-related behaviors across the follow-up period to age 3 years among children assigned to iBASIS-VIPP plus TAU (hereinafter the iBASIS-VIPP group) compared with children receiving only TAU, 18 including notable improvements in parent-rated language outcomes. This trial also reported a lower incidence of children in the iBASIS-VIPP group meeting diagnostic criteria for ASD at 3 years (6.7%) compared with TAU alone (20.5%) (odds ratio, 0.18 [95% CI, 0-0.68]; P  = .02). To our knowledge, these trials provide the first replicated evidence of a sustained benefit of a preemptive intervention delivered in infancy on ASD-related developmental trajectories.

Policy recommendations rely on a combination of evidence for efficacy and cost-effectiveness—that is, whether observed outcomes represent good value for resources allocated. Consistent with the structured approach for evaluating the iBASIS-VIPP intervention and given evidence of its efficacy and effectiveness (noting a community-based recruitment strategy through maternal and child health nurses and a child development service), 17 , 18 we conducted an economic evaluation of the Australian RCT. 17 , 18

The aim of this study was to assess whether iBASIS-VIPP represents an efficient use of societal resources, taking a government (insurer) third-party payer perspective and incorporating several performance measures as follows: (1) cost analysis measured by net present value (NPV), (2) cost-effectiveness analysis (cost per outcome of ASD incident cases), (3) timing of break-even cost (child age when intervention cost was matched by downstream cost savings), and (4) dollars saved per dollar invested.

The iBASIS-VIPP RCT 17 , 18 was approved by the human research ethics committees of Princess Margaret Hospital in Perth and La Trobe University in Melbourne, Australia. Each family provided written informed consent.

This economic evaluation was conducted from April 1, 2021, to January 30, 2023, and drew on (1) the Australian RCT 17 , 18 to estimate the cost of delivering iBASIS-VIPP and TAU and (2) diagnostic classification at age 3 years (18-month follow-up from program delivery during infancy) to model the diagnostic trajectory to age 12 years (13th birthday). 17 , 18 The modeling period was chosen to reflect the quality of evidence on the diagnostic stability of ASD and as a conservative assumption. Downstream support costs were informed by the NDIS. 9 This study followed the Consolidated Health Economic Evaluation Reporting Standards ( CHEERS ) statement.

The differential intervention cost (iBASIS-VIPP compared with TAU) incorporated all child development–related services delivered during the 6-month intervention period. Data inputs were derived from trial records. 17 , 18 The iBASIS-VIPP intervention cost drew on the record of services delivered by the clinical team, while TAU costs were derived from service use diaries completed by all parents or caregivers during the 5- to 6-month therapy period 17 and were costed using the Australian Medicare Benefits Schedule in December 2021. 20

The iBASIS-VIPP intervention is a manualized program with a defined number of sessions delivered by suitably qualified and trained staff in participants’ homes. The intervention cost for delivering iBASIS-VIPP included the following: (1) therapy costs, (2) direct travel costs, (3) therapy-related administration costs, and (4) training and supervision costs. First, therapy costs were calculated as the product of the number of sessions delivered by the therapist (introductory, core, booster) and mean hours per session delivered in participants’ homes, plus other therapy-related activities (eg, time to review video material), administrative time (eg, appointment scheduling), and published clinician hourly rates 21 (in 2021 Australian dollars) adjusted for client-based hours available, salary on-costs, and overhead. Second, direct travel cost was calculated as the mean distance traveled to deliver sessions in participants’ homes multiplied by the published reimbursement rate per kilometer. 22 Third, therapy-related administration costs were those undertaken by the therapist, including those mentioned for therapy costs. Finally, training and supervision costs were calculated as the documented number of clinician hours to complete training of a 4-day iBASIS-VIPP workshop, 2 supervised practice cases, plus monthly supervision across the trial, costed at the therapist hourly rate and including trainer or supervisor time. A per-child training cost was calculated by dividing the total training cost by 200 families. This number of families was 4 times that in the iBASIS-VIPP group but was selected to approximate the conditions in a service delivery context, assuming a mean 2-year staff retention.

The incidence of ASD diagnostic classification at age 3 years (ASD classification vs none) was a secondary outcome of the trial by Whitehouse et al. 18 Diagnostic classification was determined by 2 independent clinicians with considerable experience in ASD diagnosis (a clinical psychologist and a speech pathologist) who were blinded to treatment assignment. 18 The diagnosticians undertook case review, informed by a range of developmental assessments and videos collected at 4 time points from infancy to 3 years, and reached consensus on classification. For this study, a variant of this categorical classification was adopted, allocating children into 3 groups: (1) those who met the Diagnostic and Statistical Manual of Mental Disorders , Fifth Edition ( DSM-5 ), 1 diagnostic criteria for ASD; (2) children with developmental delay (DD) who had some traits of autism but did not meet DSM-5 diagnostic criteria for ASD; and (3) all other children. The iBASIS-VIPP intervention was hypothesized to reduce emergent disability, such that fewer children with autism traits would meet the diagnostic threshold for ASD. At the same time, there was no expectation that the combined ASD plus DD group would change. Recognizing that some children described as having DD would meet NDIS eligibility and attract support services, this group was included in the costing model. Percentage-point differences in the incidence of ASD and DD between the iBASIS-VIPP and TAU groups were calculated by simple subtraction, with 95% confidence limits (CLs) reported for ASD but not DD (DD was treated as a residual category, with the program logic suggesting that ASD plus DD would be constant). The best-estimate model assumed that 50% of children classed as having DD would be eligible for NDIS services. To model diagnostic stability to 12 years (13th birthday), we drew on 2 seminal studies reporting the stability of ASD diagnosis from age 3 years into middle childhood. 23 , 24 Combining the results of these 2 studies, we adopted an 87% stability of ASD diagnosis to 12 years. We assumed that diagnostic classification would change evenly between ages 3 and 12 years.

The diagnostic trajectory of children not meeting the DSM-5 criteria for ASD (our DD group) was assumed in the best-estimate model to be unchanged from age 3 years, lacking evidence to inform an alternative assumption. A 10% transition from DD to ASD between ages 3 and 12 years was modeled in the sensitivity analysis.

Expected downstream support costs were estimated based on diagnostic classification (ASD and DD) combined with published NDIS cost data, noting that the NDIS was established to support persons with a disability to have, as far as possible, “the same things in life as other people,” 25 by providing funds to eligible participants to access a wide range of disability-related support services. The NDIS mean support plan value per child and the percent spent are published quarterly, in data cubes, by disability type and age group ( Table 1 ). 26 Australian children who have an ASD diagnosis and meet NDIS eligibility typically receive NDIS-funded supports across childhood and into adulthood. In contrast, DD falls within the NDIS Early Intervention Program, whereby access to services beyond age 6 years is essentially dependent on a formal diagnosis consistent with severe disability not supported through mainstream services. Thus, supports for DD were costed until age 6 years. In sensitivity analysis, the transition of some children from DD to ASD was modeled. Mean downstream costs per child in the iBASIS-VIPP and TAU groups, respectively, were calculated by dividing discounted downstream cost estimates for each group by the number of children in each group.

To estimate NPV costs (or cost savings), differential treatment costs for iBASIS-VIPP vs TAU across the 6-month intervention period were combined with modeled downstream cost savings to age 12 years and discounted at 3% per annum. We also estimated a return on investment, which comprised dollar savings in downstream costs per dollar invested in iBASIS-VIPP treatment.

We estimated the cost per lower incident case of diagnosed ASD. This was calculated as the differential treatment cost per reduced case meeting the ASD diagnostic criteria at age 3 years.

All costs were calculated in Australian dollars. Costs were then converted to US dollars according to the exchange rate on January 24, 2023 (A $1.00 = US $0.703). 27

A sensitivity analysis was conducted to explore the estimated NPV cost of plausible adjustments to key parameters ( Table 2 ). The following alternate parameter values were modeled: (1) the proportion of children with an ASD diagnosis at age 3 years at the upper and lower 95% CLs (keeping total ASD plus DD constant), (2) the stability of an ASD diagnosis (95% and 80%, as reported in 2 studies 22 , 23 ), (3) the mean NDIS costs per child (±20% of published cost), (4) the model period (to age 18 years), and (5) the percentage of children in the DD group eligible for NDIS services at 100%. We did not model uncertainty in therapy cost, as economic evaluation is concerned with the association between costs and outcomes. While program costs could change (eg, under an alternate delivery model), the effect on outcomes is unknown. Therefore, the documented costs that delivered the observed outcomes were not adjusted.

We conducted 1-way sensitivity analyses, reporting the individual effect of modifying each parameter in turn. We also conducted probabilistic sensitivity analysis, describing the combined impact of adjusting all model parameter values simultaneously on NPV cost. In the probabilistic analysis, results are expressed as the percent likelihood that iBASIS-VIPP would be cost saving or achieve any specified cost-savings threshold. Modeling of base-case estimates and 1-way sensitivity analysis was conducted in Excel, version 2302 (Microsoft). Probabilistic sensitivity analysis was performed in TreeAge Pro, version R1.0 (TreeAge Software). Data analysis was conducted from July 1, 2021, to January 29, 2023. The modeling was based on a 2-tailed, 5% P -value threshold.

Of the 103 infants enrolled in the 2019 iBASIS-VIPP RCT, 17 70 (68.0%) were boys and 33 (32.0%) were girls. Follow-up data at age 3 years were available for 89 children who received TAU (44 [49.4%]) or iBASIS-VIPP (45 [50.6%]) and were included in this analysis.

The total cost of iBASIS-VIPP delivery (including TAU services) was estimated at A $5477 (US $3850) per child. For the TAU group, the estimated cost was A $346 (US $243) per child. The cost difference was A $5131 (US $3607) per child. The costs of clinical services, including apportioned training costs, are detailed in Table 3 . Further details about training costs are provided in eAppendix 2 in Supplement 1 .

The mean cost for clinical services was A $5059 (US $3556) per child in the iBASIS-VIPP group and A $346 ($243) per child in the TAU group, delivering a mean number of 12.3 and 3.8 services per child, respectively. Costs of training and supervision for iBASIS-VIPP were estimated at A $83 544 (US $58 731) and A $418 (US $295) per child.

As reported previously by Whitehouse et al, 18 the incidence of an ASD diagnosis was 20.5% in the TAU group and 6.7% in the iBASIS-VIPP group—or 13.8 percentage points (95% CL, −2% to 30% points) lower for the iBASIS-VIPP group. The observed percentage-point difference was taken as the best estimate for the economic analysis, equivalent to a number needed to treat of 7.2. The proportion of children in the DD category at age 3 years was 37.8% (n = 17) in the iBASIS-VIPP group and 20.5% (n = 9) in the TAU group—17.3% percentage points higher in the iBASIS-VIPP group. Per the program logic, the total percentage of children with autism traits (autism plus DD) was similar in the iBASIS-VIPP and TAU groups at 44.4% (n = 20) and 40.9% (n = 18), respectively.

The best-estimate discounted downstream support costs were A $20 707 (US $14 557) for the iBASIS-VIPP group and A $36 533 (US $25 683) for the TAU group. This was a lower mean cost of A $15 826 (US $11 126) per child for iBASIS-VIPP.

In terms of cost-effectiveness, the estimated cost per reduction in an ASD diagnosis at age 3 years was A $37 181 (US $26 138). When modeled to age 12 years, NPV cost savings were estimated at A $10 695 (US $7519) per child enrolled in iBASIS-VIPP (A $15 826 less A $5131 treatment cost differential; Table 4 ).

We estimated that the cost of iBASIS-VIPP to the third-party payer (NDIS) would be offset by downstream savings at age 5.3 years, or 4 years after delivery of the preemptive intervention. By age 13 years, we estimated a savings to the third-party payer of A $3.08 (US $3.08) for each A $1.00 (US $1.00) invested in iBASIS-VIPP program delivery (A $15 826 divided by A $5131).

Results of the 1-way sensitivity analysis are reported in Table 4 , and findings of the probabilistic sensitivity analysis are shown in the Figure . The largest impact on estimated NPV cost (savings) was clinical trial outcome, varying from an extra cost of A $10 214 (US $7180 [95% CL]) per child to a cost savings of A $33 431 (US $23 502 [−95% CL]). The NPV estimate was also sensitive to the model period. Modeling to age 17 years (18th birthday) increased the cost savings to A $19 979 (US $14 045). Plausible changes in all other attributes had a smaller impact on estimated NPV cost.

From the probabilistic sensitivity analysis, we estimated an 89% likelihood that NPV is at least 0—that is, downstream cost savings at least equal to intervention cost. This means there was an 88.9% chance that iBASIS-VIPP would deliver costs savings (or no net cost impost) for the NDIS, the dominant third-party payer. The likelihood of generating at least any specified cost savings (read off the x-axis) is described by the y-axis ( Figure ). For example, we estimated a 74.2% likelihood that NPV cost savings were at least A $5000 (US $3515) ( Figure ). Further details of the modeling are provided in eAppendices 3 to 11 in Supplement 2 .

To our knowledge, this is the first economic evaluation of a preemptive intervention for infants showing early behavioral signs of autism. This study drew on data from a high-quality RCT 17 , 18 for evidence on intervention costs and outcomes and on published dedicated government spending through a national disability insurer for downstream cost impacts. The results of this study suggest that iBASIS-VIPP is likely highly cost-effective, with a best-estimate NPV cost savings (intervention cost offset by differential downstream disability support costs) of A $10 695 (US $7519) per enrolled child, an estimated savings of A $3.08 (and US $3.08) for each dollar invested in iBASIS-VIPP. Break-even cost, when disability-related cost savings offset intervention cost, was estimated to occur at age 5.3 years.

A conservative approach to modeling downstream costs was adopted, including only third-party payer costs of the national disability insurer for disability supports and modeled to the 13th birthday. The analysis did not incorporate broader psychosocial and economic impacts (eg, labor force participation among parents 10 ) or outcomes related to quality of life for autistic individuals or their family members. 28 , 29 If intervention effects were maintained into and through adulthood, the cost savings would be considerably greater—noting the high support costs for autistic adults, which can include disability-based income payments. 12 , 30 Under the NDIS, mean annual support payments for adults aged 45 years or older with an ASD diagnosis are more than A $100 000 (US $70 000). 25 , 26

There has been considerable discussion within the neurodevelopmental science community about the potential efficacy of preemptive interventions that focus on antecedent neurodevelopmental trajectories, 31 , 32 rather than waiting for the emergence of the full behavioral syndrome. 33 This approach has been advanced through basic science elucidating understandings of the early emergence of autism in the first 2 years of life, 34 , 35 and clinical science that has improved developmental surveillance and monitoring of infants for ASD. 19 , 36 - 38 These scientific advances, along with knowledge emerging from the neurodiversity movement regarding the importance of adapting the social environment to meet the needs of the autistic child, formed the foundation of the iBASIS-VIPP intervention. 39 The iBASIS-VIPP intervention is applied within the early developmental epoch and seeks to enrich the social environment and interaction around the infant. The intervention adopts a parent-mediated approach, supporting parents to enhance their skills and apply them in their everyday interactions with their infant, contributing to the relatively modest cost (10 sessions over 5 months) compared with clinician-delivered therapies delivered later in childhood. 40

There may be potential for improved efficiencies in iBASIS-VIPP delivery, such as in a clinical setting or a combination of clinic, home-based, and telehealth delivery. 41 However, whether alternate delivery modes would be as effective is unknown. The results of this study suggest that improving our understanding of which infants are most likely to benefit from iBASIS-VIPP would allow the intervention to be targeted with greater specificity, improving economic performance (noting that just 41% of the trial TAU group was described as having autism traits at age 3 years).

An assumption of our model concerned stability of ASD diagnosis—specifically, that 87% of children with an ASD diagnosis at age 3 would carry that diagnosis into middle childhood. This assumption was considered well supported because it was based on 2 high-quality studies. 23 , 24 What is less certain is the diagnostic pathway of children in the DD group. Longer-term follow-up of these children is critical to ascertain their trajectories, also noting the higher proportion of children described as having DD in the iBASIS-VIPP group.

The current study has a number of design strengths. The study drew on high-quality clinical research data from an RCT that had 2 years of participant follow-up and replicated findings of a previous RCT. Downstream cost consequences relied on well-characterized published national data from a single-payer disability insurance system, in which the scope of services and supports must relate directly to participants’ disability. As such, payments made under the NDIS provide a reasonably comprehensive estimate of the cost to the human services sector of supporting disability associated with ASD—an approach to the estimation of cost consequences that is not available in other health systems. Estimated benefits are considered conservative in excluding some government, societal, and family costs and impact on quality of life.

This study had a number of limitations. The study population enrolled in the RCT was somewhat advantaged relative to the Australian population in terms of maternal education (60% of parents in the RCT had a bachelor’s degree or higher vs 43% of Australian women aged 25-34 years 42 ), English language proficiency, household income, and whether the infant was living with both biological parents (98% vs 89%). 43 Although these differences did not affect the internal validity of the RCT, they may impact external validity. Noting that study participants were recruited from 2 public health services in Australia and only 11.7% of eligible persons declined enrollment, this may be less of a concern. 19 In addition, there is mixed evidence concerning whether socioeconomic status moderates the effectiveness of parent-infant therapy, an area for further research. 44 , 45 There was a small loss to follow-up from baseline to the final clinical assessment (12.5%), but there were no notable differences in sociodemographic and infant clinical characteristics between the enrolled cohort and those included in the final clinical assessment.

This study estimated potential cost savings in a national setting (Australia), facilitated by the existence of a national disability insurer. The generalizability of these findings to other contexts will depend on service supports available to autistic children. Repeating this study in other jurisdictions would be informative.

The findings of this economic evaluation, combined with previous clinical trial evidence, 16 , 18 suggest that a proactive and developmentally responsive preemptive intervention is efficacious and likely cost-effective in supporting neurodivergent children. Noting the conservative assumptions of our analysis, these findings further suggest that iBASIS-VIPP likely represents a good-value societal investment. Given the considerable potential downstream cost savings, cautious adoption of this preemptive approach is suggested while long-term outcome data are gathered. Although the NDIS is unique to Australia, the support services it provides are similar to those needed by autistic children elsewhere in the world. Given the high and increasing prevalence of ASD globally, identifying preemptive interventions that are efficacious and represent good value is an important input to resource allocation decisions for infants who exhibit early behavioral signs of autism.

Accepted for Publication: February 7, 2023.

Published: April 5, 2023. doi:10.1001/jamanetworkopen.2023.5847

Correction: This article was corrected on April 5, 2024, to correct Dr Whitehouse’s conflict of interest disclosure regarding the copyright for iBASIS-VIPP.

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2023 Segal L et al. JAMA Network Open .

Corresponding Author: Leonie Segal, PhD, Health Economics and Social Policy Group, Allied Health and Human Performance, University of South Australia, GPO Box 2741, Adelaide SA 5001, Australia ( [email protected] ).

Author Contributions: Dr Twizeyemariya had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Segal, Green, Twizeyemariya, Hudry, Barbaro, Iacono, Pillar, Cooper, Whitehouse.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Segal, Green, Twizeyemariya, Wan, Barbaro, Varcin, Billingham, Whitehouse.

Critical revision of the manuscript for important intellectual content: Segal, Green, Twizeyemariya, Hudry, Barbaro, Iacono, Varcin, Pillar, Cooper, Billingham, Upson, Whitehouse.

Statistical analysis: Twizeyemariya, Cooper, Billingham.

Obtained funding: Segal, Hudry, Barbaro, Whitehouse.

Administrative, technical, or material support: Barbaro, Varcin, Pillar, Upson, Whitehouse.

Supervision: Segal, Barbaro, Varcin, Whitehouse.

Conflict of Interest Disclosures: Dr Green reported receiving grants from the University of Manchester in lieu of being a co-principal investigator on the project during the conduct of the study. In addition, Dr Green reported having contributed to the development of iBASIS-VIPP and holding a joint copyright for iBASIS-VIPP. Dr Wan reported having contributed to the development of iBASIS-VIPP. Dr Hudry reported receiving grants from the Autism CRC and La Trobe University Understanding Disease Research Focus Area during the conduct of the study as well as grants from the Australian Government Department of Social Services and JVCKENWOOD outside the submitted work. Dr Whitehouse reported receiving grants from Australian National Health and Medical Research Council during the conduct of the study. In addition, Dr Whitehouse reported having contributed to the development of iBASIS-VIPP and being employed by an organization that holds a joint copyright for iBASIS-VIPP (Telethon Kids Institute). No other disclosures were reported.

Funding/Support: This study was supported by grant 1173896 from the Australian National Health and Medical Research Council.

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Data Sharing Statement: See Supplement 3 .

Additional Contributions: The authors express their gratitude to the children and families for taking part in the randomized clinical trial that informed this study.

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