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Autism

Rethinking the Autism Spectrum

Autistic children may have different needs than people identified in adulthood.

When I first learned about autism—more than 30 years ago—the criteria for inclusion on the Autism Spectrum were much narrower and more distinctive than they are today.[1] Broadly, multiple differences in the development of communication, social interaction, play behaviors, and repetitive or unusual behaviors were all included and must have been present before the age of three. It is interesting that concerns about "overdiagnosis" were debated then, at a time when the reported occurrence was less than one in 500 children, or 10 times rarer than the current rate according to the US Centers for Disease Control.[2] Moreover, autism was invariably identified in childhood; either in preschool or in early school years at the latest. It was unheard of for an adult who had heretofore been undetected as neurodiverse to be identified as autistic in adulthood, and "self-identification" in adulthood was practically nonexistent. This does not deny the validity of self identification or adult identification, but rather highlights potential differences in these groups.

An intriguing aspect of the expanding and shifting autism spectrum has been the recent dramatic increase in autistic people who self-identified in adulthood. Historically, clinicians completed standardized assessments to "differentially diagnose” autism as distinct from intellectual disability, anxiety disorder, ADHD, social communication disorder, and so on. Although traditional forms of assessment continue, it is also now possible for those whose language abilities and reading skills permit to take online surveys of autism features and self-declare ASD identity. It is interesting that the characteristics of self-identified autistic people, although similar in many respects, may also show potentially important distinctions. For example, there are much higher representations of biological females and transgender people among self-identified autistic people, and nearly all are "high functioning" without the more limited communication, social, and learning differences often seen in autistic children--and those identified in childhood when they become adults.

Because of this, and especially because of the profoundly different developmental course of autistic children as compared to those who were not identified until adulthood, it may be worthwhile to consider rethinking autism spectrum disorder. Broadly, while continuing to acknowledge shared parameters across the entire “spectrum,” the divergent nature of ASD identified in childhood and ASD identified in adulthood is striking and has important policy ramifications. This is seen in other diverse groups; as an example, childhood and adult-onset diabetes are both diabetes, but are often managed differently. Perhaps autism would benefit from distinguishing child- and adult-onset as well.

It must never be forgotten that there has been a tragic history of systematic abuse of autistic people, and those who can speak can play a crucial role in securing rights for all ASD individuals. Horrific abuses have included falsely attributing autism to “refrigerator mothers” who allegedly withheld affection from their children; applying electric shocks to control behavior in children and adults; spraying noxious substances such as ammonia in autistic children's and adults’ faces; abusive "timeout/social isolation rooms"; and the continued practice of forced restraint in order to verbally prompt autistic children or otherwise coerce behavior. Because of this, the advocacy of the neurodiversity movement is vitally important and reminds everyone that respect for individuals is a core human right.

Another important development in the neurodiversity movement has been revisiting long-standing problematic research practices to better ensure that people with ASD have input into the nature of scientific study and encouraging researchers to actively solicit advice from community stakeholders. Moreover, preventing potential abuses in clinical practice and in research requires active interactions between researchers, clinicians, family members, and autistic people to ensure past abuses are never repeated. Everyone can appreciate—and celebrate—these important initiatives. People identified as autistic in adulthood have been and continue to be important voices and key contributors to these important changes in policies and practices.

On the other hand, there has also been controversy regarding whether families of autistic children should seek any kind of developmental and educational support. In addition to the universal condemnation of historical and ongoing abuses in the "treatment” of autistic people, some activists have also argued against the entire notion of autism intervention. For example, some advocates recently argued, “We recommend teaching not autistic people but rather nonautistic individuals about autistic sociality, in order to lower the burden on autistic interlocutors in cross-neurotype interactions and socialization.”[3] This position evidently holds that any form of intervention support—even approaches with a credible evidence base such as positive naturalistic behavioral interventions that explicitly reject any form of coercion while respecting the rights of autistic people[4]—is inherently the product of inappropriate power hierarchy and represents a refusal to recognize autistic identity.

In response to the position that parents and clinicians can seek support for children’s social, communication and educational development, these advocates argue that “Suggesting that some autistic people are not deemed to have sufficient skills, in this case neuronormative communicative skills, is a further example of pathologization, which is inherently harmful to autistic people’s agency and autonomy.” Further, any efforts to support development in autistic people “vindicates the argument of the empowered typicality holding authority over what is 'sufficient.'”[5] I note here that up to one-third of autistic children are minimally verbal or completely nonverbal and are unable to effectively communicate agency and autonomy—or basic wants and needs.[6]

One could argue that efforts to reject all forms of intervention support and teaching for autistic children potentially could infringe on the fundamental communication rights of autistic people—and caregivers—when basic communication and social skills needed to affirm "agency and autonomy" have not yet been developed. For example, the universal “Communication Bill of Rights” explicitly recognizes individuals’ access to communication systems—and intervention support for communication—in order to express wants and needs, as well as autonomy.[7] Although, in my view, it is inarguable that educating "neurotypical” society to accept and support neurodiverse individuals is indeed vital, it is also important to recognize that the communication rights of autistic people with limited verbal and social skills should not be abrogated or restricted. I believe that these core differences in outlook regarding developmental and teaching supports for autism may be arising from foundational differences in the nature of autism in people identified during childhood and those identified in adulthood.

Everyone should avoid stigmatizing autism, and avoid coercion and any other form of unethical practices while supporting—and implementing--policies and practices that recognize the autonomy of all autistic people. People with ASD have the absolute right to seek—or refuse—mental health supports and, if they wish, refuse communication and social intervention. However, parents and caregivers of autistic children, and autistic children themselves, should also be free to seek developmental and educational supports.

Moreover, clinicians, teachers, and translational researchers should continually seek input and guidance from the neurodiverse community. But, these clinicians, teachers, and translational researchers should not be condemned or accused of denying autistic identity for providing communication, social, and educational supports that are in accord with ethical and evidence-based standards—and when parents, caregivers, or autistic people request these services.

The ongoing refinement and expansion of the autism spectrum requires respecting the rights of all neurodiverse individuals, including those whose communication, social, and educational needs are different than autistic people identified in adulthood or who otherwise have the ability to communicate their autonomy and their intervention and education choices. One can hope that the community of neurodiverse and neurotypical people will continue to develop mutually supportive policies and practices, while understanding that these may be quite divergent in autistic people identified as children and those identified during adolescence or adulthood. I sincerely hope that different perspectives can be resolved in a manner that respects—and empowers—all autistic people.

References

[1] Volkmar, F. R., Cicchetti, D. V., Bregman, J., & Cohen, D. J. (1992). Three diagnostic systems for autism: DSM-III, DSM-III-R, and ICD-10. Journal of Autism and Developmental disorders, 22(4), 483-492.

[2] Maenner, M. J., Shaw, K. A., Bakian, A. V., Bilder, D. A., Durkin, M. S., Esler, A., ... & Cogswell, M. E. (2021). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2018. MMWR Surveillance Summaries, 70(11), 1. DOI: http://dx.doi.org/10.15585/mmwr.ss7011a1external icon

[3] Keates, N., Waldock, K. E., & Dewar, E. (2022). Tensions between autistic sociality, communication, and social skills research: A response to Bambara (2022) and Camarata (2022). Journal of Speech, Language, and Hearing Research. Advance online publication. https://doi.org/10.1044/2022_JSLHR-22-00331

[4] Schreibman, L., Dawson, G., Stahmer, A. C., Landa, R., Rogers, S. J., McGee, G. G., ... & Halladay, A. (2015). Naturalistic developmental behavioral interventions: Empirically validated treatments for autism spectrum disorder. Journal of autism and developmental disorders, 45(8), 2411-2428.

[5] Keates, N., Waldock, K. E., & Dewar, E. (2022). Tensions between autistic sociality, communication, and social skills research: A response to Bambara (2022) and Camarata (2022). Journal of Speech, Language, and Hearing Research. Advance online publication. https://doi.org/10.1044/2022_JSLHR-22-00331, p. 2-3.

[6] Koegel, L. K., Bryan, K. M., Su, P. L., Vaidya, M., & Camarata, S. (2020). Definitions of nonverbal and minimally verbal in research for autism: A systematic review of the literature. Journal of autism and developmental disorders, 50(8), 2957-2972.

[7] Brady, N. C., Bruce, S., Goldman, A., Erickson, K., Mineo, B.,Ogletree, B. T., Paul, D., Romski, M., Sevcik, R., Siegel, E., Schoonover, J., Snell, M., Sylvester, L., & Wilkinson, K. (2016). Communication services and supports for individuals with severe disabilities: Guidance for assessment and intervention. American Journal on Intellectual and Developmental Disabilities, 121(2), 121–138. https://doi.org/10.1352/1944-7558-121.2.121.

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