The Vast — and Conspicuously Disabled — Middle Range of Autism Risks Getting Overlooked
Plus, an Expert Chimes In
Nothing to see here: a vast population of severely disabled but non-profound cases of autism are being overlooked in media reports. (Stock image)
By Jill Escher
Last week saw lots of news stories about a new study by the CDC exploring the prevalence of profound autism in 8 year-old children over the period 2000-2016. Profound autism refers to the subset of people with ASD who have minimal to no language, or IQs under 50, and the need for round-the-clock supervision and care. In other words, the most extremely disabled of the autism world.
The study found 26.7% of the ASD children had profound autism. This early attempt at tracking prevalence of this sub-category is undoubtedly an enormously positive step in the right direction: it's absurd that nonverbal, 100% dependent kids like mine are lumped under the same ultra-vague diagnostic umbrella as someone with a PhD who writes books and has a family, but has some sensory and social awkwardness. The current diagnostic scheme is an insult to all suffering life-limiting impairment, and does very little to help us comprehend population characteristics or future need for services. This new CDC study, on the other hand, finally drills down to provide us some sense of the enormity of the childhood population with qualitative characteristics like my own kids.
“But while profound autism adds needed color to autism’s grey tableau, the meaning of “non-profound autism” risks becoming problematic.”
But while profound autism adds needed color to autism's grey tableau, the meaning of "non-profound autism" risks becoming problematic. If 26.7% have profound autism, what do the other 73.3% have?
I found the media reports on the CDC study troubling. Not a single story that I read called attention to the fact that this non-profound 73.3% includes an expansive population also severely disabled by autism, but not meeting the strict criteria for profound. For example, a child with an IQ of 54 and who could converse, but mainly about Disney movie scenes, would be excluded. A child with an IQ of 67 and in special day class without any aptitude for standard academics would be excluded. An 8 year-old with an IQ of 83 who still believed in Santa Claus and incapable of essential safety and self-care norms would also be excluded.
This is the vast middle of autism — a very disabled cohort that will need lifelong care at various levels. They are not what anyone would call "high-functioning," but neither are they "profound." And it's not a small group. CDC data from its 2020 surveillance of 8 year-olds indicates that an astonishing 61.4% of children with autism have IQs under 85, and 37.9 have IQs of only 70 or under. While it's difficult to put an exact number on the "vast and disabled middle," if we use IQs between 50 and 84 as a proxy, it seems these account for about 35% of cases. Which is not to say that those with IQs 85 and higher necessarily have it easy — to the contrary, many of these individuals also suffer substantial functional and psycho-social impairment.
Despite this, the news stories routinely implied that the relatively larger increase in "non-profound" autism was somehow reassuring. From 2000-2016, the prevalence of non–profound autism increased from .39% to 1.4%, while the prevalence of profound autism increased at a slower pace, from .27% to .46%.
The Simons Foundation's Spectrum News asserted that the non-profound kids would have been overlooked in previous years and decades, going so far as to claim that "The results align with the idea that much of autism’s dramatic rise over the past three decades stems from diagnostic changes." Disability Scoop talked about non-profound autism as a "milder end" of the spectrum. UPI straight-up equated non-profound cases to "mild" in its opening line. The AP headlined simply, "Milder autism far outpacing 'profound' diagnoses," saying that non-profound kids have "relatively mild symptoms."
I believe this spin is not just sloppy reporting (although it is certainly that as well), it risks creating a broader narrative that overlooks the very obvious, disability-ridden reality of the vast middle of autism. It says, basically, nothing to see here! Just quirky people! We didn't notice these mild kids before! Which is preposterous.
While we embrace the progress of the profound autism label, we must be vigilant to ensure the term does not obscure the broader population clearly and often severely disabled by autism but who do not meet criteria for "profound" — or be used to trivialize the skyrocketing rates of autism.
I am so troubled by this concern that I picked up the phone and called Cathy Lord, PhD distinguished professor of psychiatry and education at the University of California, Los Angeles, and lead author of the Lancet Commission report suggesting the term profound autism. I wanted to know — does she think the Profound v Non-Profound dichotomy could become misleading?
I was relieved to hear her say, "I completely agree with you, it would be great if you talked about it."
"It's absolutely not the case that non-profound autism is mild," she said. "You can have quite severe autism and not be in that profound category." We talked about the "vast middle" of autism like those I described above, and she agreed that "those people have got lost," and that the media did not get this story right.
Of course, as Dr. Lord stressed to me, in the Lancet report she and her colleagues did not tackle a full-scale reconceptualization of ASD — they just chipped away at an important segment.
But now we have a lazy media that can't seem to scratch below the surface of what non-profound autism really means. So while the field works to improve autism categorization, let's be sure the vast middle of autism does not get passed over as "mild" as we increase our overdue efforts to bring a higher resolution to the autism discourse.
Jill Escher is president of the National Council on Severe Autism.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.
The Vast Middle of Autism
I discussed the serious disability in this swath of the non-profound spectrum in a previous blog post. Excerpt:
My friend Mike is 30 years old, is verbal and can talk to you all week about Disney films or what Santa brought him in December, but leave him alone in his apartment and he doesn’t know how to clean, or cook, or shop for necessities. He can’t pay bills or manage basic repairs. He can’t safely take the bus alone or arrange for his own activities or transportation. His writing looks like mine did in kindergarten. He is prone to meltdowns. To me, despite his immense charm, verbal abilities and an IQ north of 50, his autism is indeed profound.
Similarly, take Terrence, another friend in his 30s. His IQ is probably in the 70s, he is verbal and can have a conversation about basic topics like sports or cars. But he is exceedingly impulsive and anxious and can, in an instant, lapse into a violent rage — all of which renders him unable to care for himself. So again, to my mind his autism is indeed profound.
Or take my friend Ben, who is 23 and works in a supported employment program at a grocery store. He can have a conversation and hold down a part-time unskilled job (albeit with ample help) but he has a 2-dimensional Manga-comic “girlfriend” and has no capacity to live on his own. Capable in some ways, yes, but profoundly autistic in others.
None of these men are in the self-advocate class; they have no understanding of abstract concepts like neurodiversity, and no grasp of philosophy or politics, nor are they specially abled in any way. Yet neither are they clear-cut “profound.”
—JE