NCSA Letter to IACC: Stop Sanitizing Autism

The IACC was intended to encompass the representation of the entire population disabled by autism to tackle the serious national crisis engulfing our families and communities, but the unbalanced slate of membership of the committee has led to a highly distorted discussions about priorities for federal agency efforts.

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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.