The IACC Should Embrace the Term "Profound Autism"

“The uptick in diagnoses makes the need to provide more specificity to the broad autism spectrum feel especially urgent, particularly given that the CDC reported that more than 58% of 8- year-olds with autism had intellectual disabilities or borderline intellectual disabilities.”

[Public comments to the Interagency Autism Coordinating Committee are public record. Comments submitted for the January 19, 2022 meeting can be found here.]

By Alison Singer, M.B.A.

I’m Alison Singer, President of the Autism Science Foundation and mother of a daughter with profound autism. I served as a public member of the IACC for 12 years.

In December 2021, The Lancet published a special report I co-authored titled “The Lancet Commission on the Future of Care and Clinical Research in Autism.” In the report, the commissioners introduce the term “profound autism,” which is intended to describe autistic people with intellectual disability, who are minimally verbal and who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum - to equip parents, researchers, scientists, service providers and the public with the language necessary to ensure that all individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like “profound autism” will simplify the process of determining appropriate care, leading to quicker and more forceful interventions. For those who bristle at the use of labels to describe autism, it’s vital to understand that the term “profound autism” does not seek to demean individuals in this group, nor does it seek to invalidate the experiences of those not in it. Instead, “profound autism” is meant to call attention to the unique needs of this vulnerable, underserved community.

A few days before The Lancet commission report set out a clear clinical definition of what constitutes profound autism, the Centers for Disease Control and Prevention (CDC) announced that autism rates are once again on the rise. The uptick in diagnoses makes the need to provide more specificity to the broad autism spectrum feel especially urgent, particularly given that the CDC reported that more than 58% of 8- year-olds with autism had intellectual disabilities or borderline intellectual disabilities. Similarly, the Lancet Commission, made up of clinicians, clinical scientists, high-functioning adults with autism and parents, reviewed several international datasets of people with autism utilizing the new clinical definition of “profound autism” (a term the commission worked on and debated for over 3 years) and estimated that up to 48% of the autism population falls into this category. In other words, for nearly every autistic person trying to get a job at Microsoft, there’s also one who is nonverbal and is struggling to get through the day without peeling the skin off her arm or biting herself. Furthermore, these data indicate that for every high functioning adult with autism sitting at the IACC table, there should be a parent representing the needs of a child or adult with profound autism.

Autism used to mean something specific; until we moved to DSM5, autism described a consistent cluster of symptoms. But today the phrase “autism spectrum disorder” has become such a big tent term that the people under that tent often have little in common with each other. Autism can mean genius, or IQ below 50. Autism can mean highly verbal or nonverbal. It can mean graduating from Harvard Law School, or “exiting” high school with a certificate of participation. It can mean self-injury, sleep disorders, aggression, pica, wandering, biting, or none of these things.

If we are going to be able to personalize our approach to care and provide benefits to ALL people, we need terminology and language that are specific and meaningful. In fact, the DSM5 was supposed to do this–it was intended to provide greater specificity so that the diagnosis would point toward potential services– but because of the way DSM5 is applied, the opposite has happened. Everyone is lumped together as having ASD. To the broader public, the word “autism” only describes the more verbal, traditionally skilled, visible end of the spectrum, because those individuals are able to have a voice, represent themselves at meetings, participate in the IACC for example, and appear in the media. Unfortunately, television shows like The Good Doctor, Love on the Spectrum, House, and Atypical are broadcasting this brand of autism, and only this brand, to the world. The result is that autistic people with the most challenging behaviors have become invisible and are being left behind. Many of them cannot speak for themselves, and so this task often falls to their family members. In fact, the basic civil rights of some people with autism are not being protected because the abilities and disabilities of each end of the autism spectrum clash, putting parents and caregivers at odds with those who can advocate for themselves, live independently, gain competitive employment and ultimately lead independent lives.

Since the publication of the Lancet commission report, I have heard from countless parents of profoundly autistic children who are scared about their children’s futures and feel bullied into silence by higher functioning self-advocates who often have a fundamental misunderstanding of what having profound autism even means. These parents tell me they are exhausted, both physically and emotionally, by the work it takes to keep their children healthy and safe each day, and by the difficulties in securing quality care for their children. Most parents tell me they are terrified about what will happen to their profoundly autistic children after they die.

I urge this committee to embrace the term “profound autism” and use it. The positive response from the scientific community to The Lancet defining and calling for use of this term has been extremely gratifying. The term is being embraced because it’s meaningful, much like the term “Asperger’s” (which, unfortunately, we also lost with the move to DSM5) was also meaningful. Both terms describe clear clusters of symptoms, which is the key to determining and providing appropriate interventions, services and supports.

I urge this committee to add additional public members who are parents of individuals with profound autism. Specifically, the National Council for Severe Autism should be represented on this committee so that the needs of this population have a strong and consistent voice.

I urge this committee to focus on this traditionally excluded population in the annual strategic plan for autism research. People with profound autism are woefully underrepresented in research studies. Some of this is understandable, because of issues around consent and language, and because it’s harder, for example, to get them to stay still in a scanner. But new PECS-based and social stories-based programs are being developed to help these individuals learn about research and prepare them to be research subjects. Excluding those with profound autism from autism research means the results of the research don’t applyto them. I urge you to overweight and overrepresent those with profound autism in future research to compensate for past exclusion.

Thank you for your consideration and for your work to support the needs of all people with autism.

AutismLand 2021 in 5 Words: So, So Sick of It

Severe autism families were not shy this past year, and here’s what they had to say.

Autism families have spoken out, and they are not happy. (Stock image).

By Jill Escher

I’m grateful that in my role as president of National Council on Severe Autism that I’ve been able to connect with thousands of families and professionals in AutismLand about their lives, worries and hopes. And based on what I’ve heard, I think I can sum up 2021 pretty easily, in just five words: so, so sick of it.

Sick of making desperate calls for help, and being told there is nowhere to go.

Sick of the chaos, repair bills, therapy bills, medical bills, marital strife, isolation, the bruises.

Sick of not sleeping.

Sick of a medical system that just doesn’t know what to do with our kids, and a mental health crisis system that says “sorry, we don’t serve autism.”

Sick of getting little support through the pandemic.

Sick of insurance companies that deny treatment for extreme, destructive, and deadly behaviors as not medically necessary.

Sick of knowing that a system that pays staff minimum wage for difficult and demanding jobs is set up to fail.

Sick of hearing their child’s overwhelming neurodevelopmental impairment is just “neurodiversity.”

Sick of reading news stories that repeat ad nauseam that the skyrocketing rate of autism — even limited to severe autism — is merely due to awareness and diagnostic factors, and of seeing that autism now affects about 1 in 44 U.S. children and more than 10% of boys in parts of New Jersey, but that “we must have not noticed this before.”

So, so sick of the anti-vaxxers.

Sick of disability rights militants who work to axe residential and long-term care programs for the most severely disabled Americans under the pretext of advancing their civil rights. Sick of same who de-fund non-competitive employment options, leaving severely autistic adults with zero ability to access employment, limiting their adult lives to mere babysitting, at best.

Sick of the fantasies about autism.

Sick of screams, the broken iPads, the clogged toilets.

Sick of online activists who blame parents for their children’s extreme behaviors, who purport to speak on behalf of our children, who seek to quash realistic images of severe autism online.

Sick of a diagnostic scheme that lumps together articulate law school graduates with mild social eccentricities, Elon Musk, and successful celebrities with our nonverbal adults who function at a preschool level.

Sick of the idea that autism is “gift,” a “different way of being in the world,” or merely a social construct. As much as we adore our children, their neurobiological abnormalities which render them helpless and dependent are hardly gifts or social artifacts.

Sick of the stories of neglect and abuse in group homes and community programs.

Sick of an antiquated system that offers no roadmap for families, leaving them fend for themselves, with only the very wealthiest having hope of creating quality care programs.

Sick of a research agenda that has produced little of consequence to help in the most acute areas of need, such as severe behaviors and long-term care.

Sick of the snake-oil salesmen who prey on desperate families.

Sick of hearing about the importance of “community-based” housing but seeing zero housing vouchers available for our severe kids.

So, so sick of panicking about what will happen to our children when we die, while mainstream autism advocacy seems fixated on trivial matters, or appeasing strident self-advocates.

Now, some will say this is all too bleak, while others will say I’ve only touched the tip of the iceberg. And while I apologize for the mood of despair, I must say that for better of worse, this captures a big slice of reality you’ve shared.

All we can do is march forward, and I know that in 2022 we can make real progress — we are already seeing the pendulum swinging back toward sanity, for example with respect to diagnostic categories, and more attention to the research needs for severe autism. The future of autism, the future for our beloved children and the growing numbers who will follow, will depend on your true stories — thanks for shouting out to NCSA during 2021, and let’s look forward to a 2022 filled with realistic, mature, and fully informed discourse around 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.