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.

Lancet Report: Momentum builds toward breaking up the autism spectrum

Dear NCSA community, 

In October, NCSA published its position statement calling for categorical recognition of severe autism in the DSM. We emphasized the irrationality of an ASD diagnostic label that includes both "a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" as well as "a college professor with social anxieties and some OCD." 

This galactic overbreadth subverts the essential purpose of psychiatric diagnostic labels: to describe a group of patients afflicted by a consistent set of impairments for the ultimate purpose of guiding meaningful interventions, services, and research.

We are hardly the only voices decrying the DSM-5's nonsensical scheme. And today a prestigious commission from The Lancet endorsed the use of the term “profound autism” to distinguish and support individuals who have high dependency needs and are likely to need 24-hour care throughout their lives. 

Below are commentaries on this direction from NCSA board members Alison Singer, Amy Lutz and Jill Escher.

We are excited to see a larger movement toward a diagnostic scheme that reflects the realities and needs of this population, which includes some of the most devastatingly disabled patients in the entire field of psychiatry — and who must no longer be hidden in a category increasingly associated with "differences" and "strengths."

—NCSA

Labels can harm, but they also can help: See ‘profound autism’
From Stat News

A Lancet Commission report sets out priorities for autism research and practice, including a new designation for “profound autism.”

By Alison Singer

Labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, I have seen numerous instances in which hurtful or inaccurate labels have been applied to my daughter. Yet there are times when using accurate labels can dramatically improve the lives of those with autism. The specific label I’m thinking of is “profound autism” — and it’s one being embraced by an increasing number of autism researchers and advocates.

On Monday, The Lancet published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism, of which I am a member. In the report, several colleagues and I introduce the term profound autism to highlight the needs of people who cannot speak for themselves.

The term profound autism is intended to describe autistic people 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, service providers, and the public with the language necessary to ensure that 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....

This muddle has had catastrophic consequences for those who, like my son Jonah, fall under the category of profound autism. Not only has their exclusion from research been well-documented, but their policy needs and preferences have been eclipsed by those of high-functioning autistic self-advocates who have spearheaded the ongoing fight to close the intensive, disability-specific settings that are often most appropriate for those who struggle with aggression, self-injury, and elopement. As the Commission noted, the most affected population is "at risk of being marginalized by a focus on more able individuals."... Read more


Lancet Commission Calls for New Category: "Profound Autism"

Pressure mounts to split the broad autism diagnosis created by the DSM-5.

By Amy Lutz, in Psychology Today

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”... Read more

Podcast interview calls out absurdity of over-broad autism spectrum

Thanks to Mary Barbera for hosting NCSA President Jill Escher on her latest podcast episode. In addition to the failings of autism diagnostics they discuss new directions for autism research, exponentially increasing autism rates, NCSA, and national autism policy (or lack thereof). Listen in

Have an opinion about breaking up the autism spectrum? Join the conversation on NCSA's very active Facebook page.

See NCSA's position statement on the need for categorical recognition of severe autism in the DSM.