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Key points
- The expanding autism spectrum has resulted in a dramatic increase in cases.
- Adults who self-identify as autistic is a relatively new aspect of the spectrum and are often quite different than autistic children.
- Social activism focusing on societal acceptance and tolerance is important, but should not preclude providing intervention support.
When I was first trained in assessing communication and social skills in autistic children in the 1980s, all of the cases displayed clear examples of the core features of autism, including a notable reduction in motivation for social communication, delays in communication development, and a striking adherence to routines. Although I did see children displaying these features as preschoolers, most cases were early school age (kindergarteners or first graders), and all were identified and received support services before middle school. Moreover, these hallmarks of ASD were unmistakable and it was virtually unheard of to reach adulthood without previous identification. The movie Rain Man was an accurate portrayal of an autistic adult who had been identified as autistic in childhood. At that time, ASD was relatively rare, occurring in about 1 in 1,000 children.
Over the past several decades, the autism spectrum has gradually expanded to include subtler and less noticeable features. Striking differences in motivation for social communication has been replaced by social awkwardness and difficulties in some of the more nuanced aspects of conversation. I have seen more and more children identified as ASD who would have previously been seen as language delayed, learning disabled, hyperactive, inattentive, or socially awkward. They have now been added to the spectrum. According to the CDC, 1 in 44 children[1] are autistic today, which is more than a 20-fold increase. This expansion of the “spectrum” has had at least two unintended consequences: Potential mismatches between expanded ASD “symptomology” and interventions, and an explosion in self-identified autistic adults whose needs—or even desire for support—can be quite different than other autistic people, especially children with limited communication ability.
On the one hand, the expansion of the autism spectrum has undoubtedly increased the detection of ASD at earlier ages and the supports for autistic children who formerly would have been missed. On the other hand, because interventions and supports were designed to address the core features of autism, ASD interventions may not be helpful for children whose profiles are not in accord with the core features of ASD as these interventions are designed to address core features. Indeed, it is possible that profound alterations to social interaction and learning could actually be harmful in those children who do not display traditional autistic traits.
Another perhaps unintended consequence of the expanded autism spectrum is the dramatic increase of self-identified autism in adults—and the social movement this has fostered. These individuals were previously not identified as autistic people, and, in many cases, have self-identified on the basis of an online questionnaire or survey. A Google search yielded a number of sites with teasers such as "Am I autistic?” or “Free online autism quiz.” Accessing these quizzes revealed questions such as “Do you prefer reading nonfiction or fiction?” (I really enjoy reading history and science); "Are you good with numbers?” (I teach statistics at a university and like math); “Do you focus on details?; and “Do you notice details that others do not?” (As a clinical-translational scientist, I definitely focus on making sure data in my studies are accurate and most scientists are skilled at noticing details). Let's just say that although many scientists, including me, can legitimately be viewed as being a bit quirky, it might be problematic to aggregate scientists with autistic children who require extensive specialized support to learn to communicate, be in school, and otherwise participate in society. The point here is not to criticize people who identify as autistic on the basis of these quizzes or other methods of identification in adulthood. Rather, it is important to consider the impact of this new way of identifying autism on the community—and on support services for autistic children and their families.
One could ask whether there are any disadvantages to adults "self-identifying" as autistic. Let me be crystal clear here in saying that I completely support the right of anyone to decide who they are and who they want to be and this includes those who wish to self-identify as autistic. In addition, there should never be any disagreements about supporting individual rights for autistic people and their families. There has been a tragic history of abuse including electric shocks and spraying noxious liquids into the faces of autistic people in the name of "behavior management." And there are interventions predicated on restraint and prompting that continue to this day and would appear to violate the fundamental right of every person to be free from restraint with very limited exceptions for medical necessity.
On the other hand, there is a growing movement predicated on societal tolerance for and in support of neural diversity, including autism, that questions any form of intervention support for autistic people. This view asserts that efforts to teach social skills, conversational skills, and other forms of positive behavior support that are designed to increase societal participation for autistic people are misguided because the problems lie with society’s intolerance of autistic identity. In this view, efforts to teach an autistic person to "conform" to societal expectations violates their rights.
Again, let me be crystal clear: Society has a moral obligation to tolerate, include, and support people with disabilities. Autistic people should have the absolute right to participate in or to refuse any interventions or supports designed to teach social skills or communication, or any other kind of behavior modification if they wish. And it is likely that those who have self-identified as autistic also possess the skills to make active choices about their lives, including regarding which (if any) mental health supports or social and communication supports they wish to access.
On the other hand, the notion that all manifestations of autistic “identity” preclude intervention support in the name of tolerating diversity can be problematic, especially for autistic people who have basic difficulties communicating and participating in education and in their communities. in my work as a clinician and as a clinical translational scientist supporting social communication development in autistic children and their families, I worry that autistic children who are nonverbal, minimally verbal, or low verbal such that even communicating basic wants and needs is problematic would be denied these supports because this would alter or devalue their autistic identity. It is certainly true that this autistic “identity” includes being nonverbal, minimally verbal, or low verbal.
An example of this dilemma can be seen in a six-year-old boy from Mississippi who recently visited our clinic at Vanderbilt University School of Medicine. He was completely nonverbal, which is defined as not being able to use speech to communicate and essentially having no verbal words. Interestingly, like many autistic children, he did have important strengths which in this case included being able to read, and to understand words. It turns out that he could use a computerized speech-generating device called an augmentative system to speak for him and I was able to advocate with his school district to provide this technology to him along with family support to help them understand how to communicate with him using the device. His mother recently emailed me expressing her happiness that they could now communicate with her son and that he could now be in a different classroom than the custodial care he had previously been attending. Perhaps even more importantly, his frustrations arising from being unable to communicate, including tantrums, had dramatically diminished.
Was it unethical for me to "deny" his autistic identity as a nonverbal autistic child and provide a speech-generating augmentative device? When I worked with the family at school to support his using a speech-generating device to speak for him, was I taking away "his voice"? I believe that this child's family has every right to seek services to support his social and communication development and that providing the supports should not be considered unethical so long as force prompting, restraint, and other basic violations of human rights and human dignity are not employed. Candidly, while applauding individual rights and the choices of neurodiverse people, including those who self-identify as autistic, I worry that autistic children such as that child from Mississippi would be denied services in the name of accepting his autistic identity. I sincerely hope that society can both accept autistic identity and provide services to autistic children and their families if they wish—and that this should not be viewed as unethical. Finally, I also hope that clinical translational researchers seeking to better serve these individuals who wish to have intervention support for social communication would not be subjected to social activism campaigns designed to shut down this research so long as basic principles of conduct and ethical research including consent and assent are strictly adhered to.
[1] https://www.cdc.gov/ncbddd/autism/data.html, accessed April 11, 2022.
