What is profound autism? Who is in? Who is out? Some musings from the trenches
How do we frame subcategories of autism? The author’s daughter can clearly be said to have profound autism, despite her easy-going nature. Others seem to fall into a grey area.
By Jill Escher
After the Lancet Commission published a recent report recommending adoption of the term “profound autism,” many breathed a sigh of relief.
Finally, a group of experts acknowledges the (oh-so-obvious) need for research, treatment and policy targeted specifically at the population stuck in the deep end of autism — a group largely overlooked in favor of those with milder impairments. “They and their families are at risk of being marginalised,” said the report, “by a focus on more able individuals.”
The report emphasized that “[c]hildren and adults with autism and severe and profound intellectual disability have vastly different educational and long-term care needs that cannot be properly planned for if these individuals are not identified.” So yes! Hallelujah to the consensus that we must do more to identify subgroups of autism by functional realities, particularly those suffering severe impairment.
But how far does profound autism stretch? Who is in? Who is out? I need to admit, for some cases I am still struggling.
Let’s start with the definition in the report itself.
The Commission defines it as an administrative term to apply to older children (from about age 8 and up) and adults with autism. It’s not intended to be a diagnosis per se, but rather a grouping that should be used in studies, education, disability systems and the like. According to the report, these individuals exhibit, or are likely to exhibit as adults, the following:
• They require 24-hour access to an adult who can care for them if concerns arise; they are unable to be left completely alone in a residence. They cannot take care of basic daily adaptive needs.
• In most but not all cases, their needs are associated with substantial intellectual disability (e.g., an IQ below 50), very limited language (e.g., limited ability to communicate to a stranger using comprehensible sentences), or both.
• Profound autism can be associated with complex co-occurring difficulties, including self-injury, aggression, and epilepsy, but is not defined by these factors.
Okay, these are people who remain seriously neurodevelopmentally disabled to the point that they cannot provide basic care for themselves nor engage in basic conversation. I get it.
My two kids with nonverbal autism, Jonny, a 23 year-old man and, Sophie, an almost 16 year-old girl, clearly fit the profound bill. But even they are light years apart in severity, with my daughter being an “easy as pie, let’s go swimming, skating, skiing, dancing, out to movies and restaurants” variety of severe autism and my son being of the “oh no, will that new couch survive the day” sort. Even in “profound autism,” we see 1,000 shades.
Now, what about the verbal cases? 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.”
As the Lancet report made clear, the point is not “let’s play with semantics for fun,” but instead entirely pragmatic — we need labels that tie actual human beings suffering with striking disability to better outcomes in research, treatment and services.
For these grey-area cases I would argue that “profound autism” is appropriate from a practical point of view: like my kids, they suffer from very serious deviations in cognitive functioning, need 24/7 support and cannot effectively self-advocate, three of the areas highlighted in the report. In addition, the report did not require an IQ lower than 50, though it said that applies “in most cases.”
When a policymaker sees “autism,” does she think of The Good Doctor or an articulate self-advocate, or does she think of Jonny, Sophie, Mike, Terrence and Ben? Does she think “they just need some inclusion, job training and therapy” or does she think “they need some serious 24/7 lifespan support.” These distinctions matter, enormously.
What are your thoughts? I look forward to continuing this important conversation.
Jill Escher is the president of the National Council on Severe Autism. Names in this post have been changed to protect privacy.
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.