John Elder Robison :
The Lancet Commission, made up of many scientists and self-advocates that I respect, has taken the position that we should use that label to distinguish a group of people on the autism spectrum with unique needs different from those of the majority of the autistic population.
Autism is a medical term for a condition that produces significant disability in the diagnosed individual. Profound means “very great or intense.” So profound autism is a very great or intense state of autism, in the sense of “very great or intense disability.”
Many people in the neurodiversity community have taken issue with dividing the autism spectrum or the autistic population by so-called function levels or degree of disability. If we say, for example, that non-speaking autistic people are more profoundly disabled, opponents may say some nonspeaking people communicate in other ways. Or they may say they can’t speak either, in some situations.
I would not call such people “profoundly autistic.” Profound autism is not a state we slip into under stress. It does not come and go. It’s not associated with any hidden gifts. I know people who I would characterize as profoundly autistic. They are people, just like you and me. They have the same humanity as any of us, but thanks to their autism, they do not have the same opportunities. They are not able to speak for themselves. They are not able to care for themselves in a way that keeps them healthy and safe.
Opponents may say, who am I to say what’s healthy or safe for someone else? I’m not saying what’s healthy for them. I’m just stating an opinion based on my observation.
The majority of individuals diagnosed with autism have good cognitive skills and exhibit a mix of strengths and disabilities. There are millions more people with traits of autism, but no diagnosis, for whom that is also true. The support needs of people in that group are very different from those having profound autism. Most of the autistic voices we hear from are from this majority group.
While I understand the arguments against a subdivision of the autism diagnosis, I have seen how different the needs of this group are, and how little we have accomplished in the past decade to make their lives better. We’ve developed therapies like Peers or Unstuck that are life-changing for many autistic people. There is no equivalent for their profoundly autistic peers.
Most autistic people grow up to live independently, and treasure their right to independence. Some know what it was like to be deprived of that right through forced institutionalization, which they look back on with horror from their current perspective. My own parents were committed against their will when I was younger, so I knew that as a terrified child. But today I recognize that the issues that prevent profoundly autistic people from living independently are fundamentally different. Yet I know that independence is a dream we all have, and it’s a goal we have made little progress toward for a small group of our population.
Another of my friends read the first draft of this and pointed out that profoundly autistic people are not the only people in the autism community with high support needs. Nor are they the only ones who may need protection. There are many autistic people who are unable to work and be self-supporting, yet have no apparent disability. There are autistic people who are trapped in dangerous occupations like sex work. While it’s true that autism can disabling on many levels and expose people to a wide range of hazards, those are separate problems from the ones presented by the profound autism community.
Even though I sympathize with those who oppose subgroups, I also see how subgroups can provide a clear group of people with a common range of needs for whom supports can be designed and delivered. Helping the profoundly autistic community does not preclude helping those other communities.
With a limited budget, NIH is always forced to decide which projects to fund. We can never fund all the promising work. It’s possible that carving out a part of the spectrum into its own category can give those people their own funding and, perhaps, greater success as a result. If the label profound autism leads to a better life outcome for this group, I’m all for it.
In the absence of a defined group with a specific need, we tend to fund programs that give the greatest benefit to the largest population. But that thinking necessarily excludes small subgroups with specialized needs, and I think that’s a concern the profound autism language attempts to address.
In schools and other life settings, the profound category sets apart members of that group from the overall ASD population in the same way “Kanner Autism” and “PDD NOS” once did. ASD level 1 or 3, in this domain or that, sounded good when the DSM5 was written, but as a practical matter, it leaves many people poorly supported.
Whether you agree with this or not, I hope you will agree there is a subset of the population with significant support needs due to their level of disability, and that they are currently underserved. If you don’t like the idea of this term, what would you do to start us on a path toward better outcomes for that group?
(John Elder Robison is the author of Look Me In The Eye: My Life With Asperger’s, and Be Different, Adventures of a Free-range Aspergian).
