Would a Profound Autism diagnosis help or harm or both?

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Since 2013 autism diagnoses have been classified under one large category, leading to greater recognition of the variety of ways autism can present. As services for autistic people with less obvious presentations have expanded, advocates for children and adults who need extraordinary levels of care fear that they’re being forgotten.

Now, the autism community finds itself divided over whether creating a 'profound autism’ subtype would help those with the greatest needs, or leave them even more vulnerable. Many parents say that without such a designation, their loved ones are left out of research, services and even public policy discussions. But autistic self-advocates see unity as the best protection for everyone on the spectrum. They believe that those who can speak and share their lived experiences must do so for those who cannot – so that all autistic people remain part of one shared story.

Autism Parent Advocates And Experiences of Exclusion
When people with MDs and PhDs or celebrities like Elon Musk, who prior to 2013 would have been labelled with Asperger’s Disorder, were now simply autistic, the culture’s view of autism began to change. “Autism really became overly romanticized," says Alison Singer, autism parent advocate and founder of the Autism Science Foundation. "Now, when you say autism, people think of higher-skilled individuals because they are the ones who are seen.”

“Those with autism who have intellectual disability and self-injurious behaviors and minimal or no language—they have been left behind," says Singer. Singer frequently receives messages from parents about their children being excluded from autism-specific programs. "If you could choose between serving someone who is much higher functioning or someone who is likely to hit or bite you—who would you choose?”

In a recent New York Times article, Singer, shared the story of her autistic daughter Jodie and why she believes that we need a profound autism subtype to describe Jodie and others like her. Singer was a member of the 2021 Lancet Commission, a group of autism experts, researchers and advocates who called for the term profound autism to better identify those who often do not use spoken language, require 24-hour care, or have significant intellectual disabilities. “If there were a subtype of profound autism," says Singer, "then we could finally target research dollars at creating therapies, technologies, interventions that support people with profound autism.”

How One Autism Empowered Autistic Self-Advocates
With the adoption of a single autism spectrum diagnosis, autistic people who had once been separated by categories began to recognize their shared experience. Dr. Mary Doherty, an anesthesiologist and clinical associate professor at University College Dublin School of Medicine, discovered her own autism in adulthood. She then founded Autistic Doctors International, a supportive community for autistic physicians devoted to autism research and advocacy.

Through working on projects to help autistic people, Doherty came to recognize that her experience of being autistic was fundamentally the same as autistic people considered to be far more impaired. That might initially feel unlikely, as Singer told the New York Times, “the idea that Elon Musk has the same diagnosis as my daughter is ludicrous.”

“I would have been in that camp a decade ago,” says Doherty. “At the start of all of this, I thought, ‘How could this possibly be the same? How could there be anything in common?’” But the more she spent time with autistic people across the spectrum, the more she recognized that the core experience of social difficulties, need for predictability and sensory differences was the same. “I get people who don’t speak saying, ‘We have so much in common.’ I wouldn’t have seen that at the beginning, probably because I wouldn’t have wanted to see myself that way.”

When autistic individuals see that their experiences were more alike than different, many are inspired to advocate for those who cannot speak. For example, a group of autistic parents of autistic offspring with the highest support needs, formed the National Autistic Task Force in the UK. They produced the NAT Guide, an independent guide to quality care for autistic people, by autistic people.

Autism Research: Priorities And Inclusion
Autistic children with the highest support needs are underrepresented in research, leaving parents frustrated. “Our families want to understand the underlying biology," says Singer. "Why doesn’t my child talk? Why doesn’t my child sleep? Why is my child banging her head against the ground?” Singer believes that adoption of the term profound autism is essential to making sure this imbalance in the research is corrected. Still, Singer points out that in the U.S., Congress has already taken action. When the Autism CARES Act was re-authorized in late 2024, the NIH was required to fund research across the full spectrum of autism.

Doherty, who opposes splitting the autism diagnosis, believes that including more autistic people with high support needs in research is critical. “The most exciting developments that I’m seeing in autism research is the involvement of autistic researchers,” says Doherty, noting that autistic researchers are interested in the whole autism spectrum and particularly in those with the highest support needs.

What Autistic People Say About Profound Autism
Intellectual disability or lack of speech are two criteria proposed for the profound autism label. However, examples like Jason Arday, the youngest black professor at Cambridge, an autistic man who did not learn to speak until age 11 or read until age 18, remind us how difficult autism is to categorize.

When it comes to people who do not communicate through speech, we are terrible at measuring IQ. As Jason Jacoby Lee writes in a letter to the New York Times, “I am one of these so-called profoundly autistic people this article describes. I cannot utter meaningful speech, and as a result, I was branded for years as someone with an intellectual disability and an I.Q. of 40. All this time, however, I understood everything that was going on around me.” Once Jason learned to type, his intelligence was recognized and he takes college classes. Jason argues that classifying people into profound autism will give us an excuse to stop trying to tap into their skills and insights. “I was just misjudged and ignored, and I fear that my fate will be the fate of many others termed low functioning in this new schema.”

How about those who aren't profoundly disabled, nor are part of an autistic elite?

I will say it again -- it's the severe comorbidities and overshadowing most of the blame over autism.

And I'd still say it again; it doesn't matter if the person is high or low IQ -- they'd blame the autism.
Doesn't matter if the person is nonverbal or hyperverbal -- they'd blame autism.
Doesn't matter if the person is physically disabled by a severe learning disability or is a savant -- they'd blame autism.


I say it won't help.
And I'd say that label is just for validating caretakers who went over their heads before deciding to have a kid, thinking that having one isn't a genetic gamble, and are likely had been expecting neurotypical children and typical parenting experiences from typical neurotypical expectations.

I'd say, get services available for families of said autistics instead, seperate from autistic matters and needs and what's best for said autistics than lie about that.

As long as there's no reliable means to distinguish between an autistic who actually has an IQ of 40, from an autistic who only appeared like they have an IQ of 40 because of severe learning disabilities/no means of accomodations or proving they understand everything around them/whose autism IS severe for reasons nothing to do with intellectually disability AND/OR learning disability -- and with the possibility of ending up condemning these cases to the label so called "profound autism" -- many self advocates would disagree.


Lastly; I'd say endorse the fact that autism rarely ever comes without comorbidities. And a good portion of those comorbidities are more disabling than autism by itself.

And this is coming from someone who doesn't.

How about those who aren't profoundly disabled, nor are part of an autistic elite?

I wonder when or if the DSM 6 comes out some of what we call comorbidities will be listed as Autistic traits. If they are very common they probably should be. Intellectual disabilities do not fall under that category and IQ is an unreliable indicator of intellectual disabilities in autistic people.

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I have several dxed/probable/possible co-morbidities. Schizophrenia/schizoaffective(dx), social anxiety(dx?) dyspraxia(probable), dysgraphia(probable) ADHD inattentive (possible), total aphantasia

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I can attest that IQ is a part of one's cognitive profile, but autism is not just IQ or only just the cognitive profile.

How about those who aren't profoundly disabled, nor are part of an autistic elite?