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It’s time to rethink “severe” Autism

Opinion and Response to the 27 October 2022 article “It’s time to embrace profound autism” by Alison Singer

Photo credit: Pawel Czerwinski for Unsplash


I read the opinion piece by a fellow mother of an Autistic child with high support needs with a sense of fear and dread. Parenting a child with high needs is as hard. Harder than parenting typical kids and harder than parenting Autistic kids who can care for themselves and become adults who can continue to care for themselves. Is there a place where that knowledge seems to be missing? People who are unaware? Why do parents of children like mine want their children to be seen as separate and profound?
What benefit does it provide to their child?
Will it give them more services targeted to their needs?
No.
Services are already based upon assessment of needs and not on diagnosis. This is why each and every year there are new assessments for every type of therapy. Properly identifying the co-occurring disorders are more likely to do this.
Will it help them communicate?
No.
Only acting to provide them with competent professionals who presume them to be competent and address their unique strengths and needs through rigorous assessment that includes a holistic understanding will do this.
Is it to carve out a space just for those Autistics?
What space is that?
From my vantage point, it looks like institutionalization, or what I would call my worst fear as a parent and as a professional. We’ve spent decades dismantling systems that took away autonomy and assumed all non-speakers are intellectually disabled.
What’s the difference between a quirky, clumsy, Autistic and one that needs forever care? It’s a spectrum, they say. In presentation to others, Autism looks very different from one person to the next even in the same family. The difference isn’t the Autism spectrum dialed up or dialed down. It’s co-occurring disorders.
Searching the Spectrum archives yields many wonderful articles about the role of motor disorders in Autism that have been largely ignored in treatment and education approaches. What if what we know about “severe” or what some would call “profound” Autism is incomplete? That we are identifying non-speakers who can’t demonstrate their knowledge as intellectually disabled and closing the door on them?

It's time researchers, professionals, parents to stop looking at Autism as a condition of range and start seeing it as a divergent brain type prone to co-occurring with other conditions and where the variables between Autistics are those co-occurring conditions, experiences (including trauma) and invalidating environments. Going backward towards an “infantile Autism” of the past to separate those Autistics stuck in uncooperative bodies serves no one--not even parents who want their children seen and reflected in research and life.
I prefer the safety of the group for my daughter. She is accepted by other Autistics as she has never been accepted by non-Autistics. I prefer not to have her herded away from regular Autism to the category of “profound” because its sisters “severe” or “low functioning” are already used to deny her autonomy.
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