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ASPartOfMe
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29 Nov 2022, 7:35 am

Rethinking the Autism Spectrum

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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.

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. 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.” 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—is inherently the product of inappropriate power hierarchy and represents a refusal to recognize autistic identity.

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.

I think this proposal while based on flawed assumptions should be a starting point. I have always advocated for more subcategories over “it’s all just autism” and splitting autism up into separate conditions.The author is flawed in assuming the difference in when a person is identified has to do with “functioning”. Yet in my 9 years here I find there are general difference in childhood and adult needs. The rigid criteria due to lack of knowledge is the biggest reasons why autistics were not identified as autistics. This is not only about no diagnoses but misdiagnosis that is still ongoing. Another important factor in needs is natural maturity. Related is that those diagnosed early have had interventions (good and bad) while us older ones were often on our own. Also for knowing one is autistic from the get go often results in a different attitude towards the autistic part of themselves then finding out late in life.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


carlos55
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29 Nov 2022, 11:33 am

The main problem is while the disability is real autism only exists on paper.

In around 80% of cases there is no biological test for it. So they label autism as one condition when it’s obviously just an umbrella term for many conditions where there is an overlap in symptoms.

There is no scientific evidence that many of those diagnosed have anything in common apart from this.

In western countries these days the earlier your diagnosed the more serious the symptoms and more likely to have other comorbids like ID that don’t usually get unnoticed these days.

So we can’t really have a one size fits all system.


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"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw