Editor’s Note: Autism Spectrum News strives to be an inclusive voice for the Autism community by presenting articles that promote discussion and advancement. This article is a response to Alison Singer’s article It’s Time to Embrace ‘Profound Autism’, published by Spectrum on October 27th, 2022.
This article was originally published on the Neurodiversity Press Blog and has been republished with permission.
In “Profoundly Sick,” Autistic author and administrator Michael John Carley weighs in on the ethical implications of Alison Tepper Singer’s article, It’s Time to Embrace ‘Profound Autism.’
Read Michael’s Contribution Below
Let’s NOT Divide the Autism Spectrum: My View From the Trenches on “Profound Autism”
The humanistic concept of neurodiversity has shown great promise in uniting people from all walks of life across race, class, ability, diagnosis, etc. Some prominent voices in the autism world are proposing a new category which they are calling “Profound Autism.” My son, Tariq, born in 1979, would fit in this category. From my view this would be a big mistake, and we should not let it happen. First, some background.
Dr. Robert Naseef with his son Tariq
The term “profound autism” first appeared in the scientific literature in 2021 in The Lancet Commission on the Future of Care and Clinical Research in Autism. This report describes those with “profound autism” as being at least 8 years old, requiring 24-hour access to an adult caretaker, and having cognitive ability measured by IQ of less than 50 and/or nonspeaking or minimal verbal ability. In its Executive Summary, the Lancet Commission calls for dramatic action over the next five years to bring desperately needed supports and services to autistic children and adults and their families worldwide based upon their individual differences, strengths, and needs. Although the heterogeneous nature of the autism spectrum is explained well, none of this is new, save for the division of a new category. The Commission takes a social justice perspective noting that services are woefully underfunded even in high income countries and almost nonexistent in low-income countries. They note that most of the research to date has been based on white males. Even in the United States, it is well documented that funding varies considerably according to the local school districts which significantly disadvantages children and families by race and class.
Alison Singer, President of the Autism Science Foundation, recently published It’s time to embrace ‘profound autism’ in Spectrum. Backed up by the Lancet, she argues that the new diagnosis is needed to better serve this vulnerable and underserved population which she sees as left behind by the autistic self-advocates who can speak for themselves. She conveniently ignores the clear voice of the Autistic Self Advocacy Network in their statement of December 9, 2021, “Functioning Labels Harm Autistic People.” Let’s not forget that it was the Lancet in 1998 that published the pseudo-science of Andrew Wakefield and 12 colleagues who blamed autism on vaccines, and in particular the MMR. Wakefield’s study triggered a vaccine-autism hysteria around the world, that still exists today. It wasn’t until 2010 that the Lancet officially revoked the publication of the article due to ethical concerns. Also in 2010, Wakefield lost his British medical license.
The stereotype of autism in the mainstream media has certainly shifted from the nonspeaking to the self-advocates. Major autism conferences, such as the one Alison Singer described, feature speakers who do not represent the full breath of the autism spectrum. Of course, parents including myself fantasized that my son could grow up and be like another Temple Grandin. I would argue that a new category does not solve this problem. This can be corrected by conference organizers doing a better job covering the full range of needs and services across the spectrum. The humanistic stance of the Autism Self Advocacy Network has always been and continues to be: advocate for all autistic people and their families.
My view is informed by my lived experience raising my Black biracial son in the Philadelphia area. When Tariq was born and I held him in my arms, I imagined he would be a better version of me. He would be more patient, more athletic, have a good life with success, and most of all I wanted him to be happy. He stopped speaking at 18 months and started pacing and flapping, behaviors that he still uses to regulate himself. Unaware of danger, he wandered away and required constant attention. He didn’t sleep through the night, and he even escaped by climbing out windows or going down fire escapes. He smeared feces at home and in school. He destroyed things at home, including his little sister’s artwork. When he was diagnosed with autism in his fifth year, my dream of a “normal” son was obliterated. I resolved to do everything I could to help him have the best life possible with the happiness he deserves.
My journey to acceptance was paved by a friend and colleague who helped me to realize that I was mourning a lost dream. His therapists and teachers helped me to focus on what he could do as opposed to what he couldn’t do. I began to enjoy what we could do together. Although Tariq has many challenges, he has done his best. I tried so hard to change him, and in the end, he changed me. He made me become a better version of myself – a better man, a better father, and a better partner. This is the journey I am still on. Like many other parents of nonspeaking autistic children, I have had imaginary conversations with him many times over the years, and I wonder what he would tell me if he could speak. In a 2019 blog, I imagined what he would say to me.
The growing cohort of autistic adults has contributed profoundly to my understanding of autism. Trailblazing Jim Sinclair wrote “Don’t Mourn for Us” in 1993. While some amount of grief is normal, getting stuck there, according to Sinclair, “is damaging for both the parents and the child and precludes the development of an accepting and authentic relationship between them.” The real grief in Sinclair’s view is not autistic people themselves but rather that our world has no place for them (or you can say – does not create space for them). Parents are urged to get angry about that and change this situation.
For anyone who wants to understand autism at a deepened human level, I would urge you to listen to and read the advice of autistic adults who are self-advocates, for starters:
- Temple Grandin proclaims that she is “Different but not less.”
- Dena Gassner teaches, “You don’t outgrow autism, you grow into it.”
- Michael John Carley says, “Acceptance is a start not a finish.”
- Jennifer O’Toole says, “The face of autism is changing. And more often than we realize, that face is wearing lipstick.”
- Stephen Shore says, “If you know one child with autism, you know one child with autism.”
- Keep listening to voices of autistic people that, unlike my son, have been able to communicate in ways you can understand, and keep reading the work of the Autistic Self Advocacy Network
- Keep in mind that an increasing number of autistic people are using devices to communicate.
Inspired by my son, I have developed a voice in the Autism Community. I have served on several boards and spoken to conferences around the country and internationally. I am not meeting parents or self-advocates who are asking or suggesting a new category. The main questions I hear are “How do I help my child?” or “How do I get help for myself?” Like many other groups pushing for change, the autism community has had numerous splits and factions. We don’t need more of that.
With my friend and colleague, Dr. Michael Hannon, I have cofacilitated a fathers’ support group at the AJ Drexel Autism Institute. Our group is diverse in many respects. We have fathers from various ethnic groups and faith traditions who take care of children of various ages and developmental levels, from the newly diagnosed to adulthood. In addition, some of our members are autistic themselves and provide valuable insight into understanding the language and communication styles of our children. We meet monthly and provide a safe place for fathers to share and celebrate their wins and express their deepest frustrations. This “functional diversity” helps EVERYONE by illuminating our shared humanity. Separating us by the functional labels of our family members would be an unnecessary loss.
The unmet needs of autistic children and adults with their families are a global public health emergency. Let’s not divide people up further. Let’s unite and go forward with a humanistic vision that everyone should get the supports they need and deserve to lead a full and rewarding life.
Robert Naseef, PhD, is a clinical psychologist, author, and parent of an adult son with autism. He is the co-facilitator of a fathers’ support group at the A J Drexel Autism Clinic. He serves on numerous boards. His social media links can be found at https://linktr.ee/RNaseef.
Profoundly Sick
Alison Tepper Singer, the executive who well over a decade ago left Autism Speaks to found the Autism Science Foundation, has recently published an article in “Spectrum” calling for the legitimization of the term “Profound Autism.” To almost every humanist voice in the autism world, the emergence of this term is a desire to return to the divisive, demonizing days of yesteryear, when many parents of significantly-challenged autistics – usually proportionately well-off ones – demanded the right to condemn autism as a whole. Autism for them was an affront from the Gods against that which they felt entitled to, (i.e., “normal” children).
Michael John Carley
But Alison’s article in “Spectrum” goes deeper. It not only returns the justification of “I Am Autism” type views, she has gone out of her way to blame and antagonize the neurodiversity movement – to be clear, a community of people with significant disabilities (that includes I and my older son). She knows full well that the term “high-functioning” (as well as its opposite, “low-functioning”) is offensive to the majority of the spectrum world – including those with significantly challenged kids – and yet she uses the term not once, not twice, but four times in her piece. Not knowing any better is more than forgivable. But arrogantly, Alison has always dismissed our right to determine what words should, and should not, be used to refer to us. Alison’s repeated messaging is that these are her calls to make. That’s “colonialist” at best.
People may remember Alison from the film “Autism Every Day” where she relayed almost driving herself and her daughter off the George Washington Bridge, simply because her daughter had been diagnosed with autism. SO many parents with similarly challenged kids – such as Elaine Hall, Chantal Sicile-Kira, Robert Naseef, or Kristina Chew – have since discovered the benefit to their kids when they themselves adopt humanist, “there’s no one to blame” approaches, and acquire services for their kids that are not based in compliance.
Also, back in those troublesome 00s, Autism Speaks folks would frequently declare that before them “there was nothing out there” for parents. Untrue. There had long existed myriads of emotionally healthy parent support communities established by wonderful, regional parent organizations. But Alison and her circles never felt comfortable going to these groups for reasons of socioeconomics.
Her blaming disabled communities for diagnostic criteria that they did not create is also mystifying. Or is it? Alison continues to cozy up to the very authors of those DSM diagnostic criteria – Alison’s “hand on hip pose” with them at parties can be seen all over the web. But to blame these research celebrities for the diagnostic criteria that they wrote…would deny Alison access to those parties.
I’ve known Alison since 2005 when we “conversed” over the word “cure,” and personally, she can charm. I too was fooled. But her article proves that when it came to her daughter’s diagnosis, she never grew up.
We’ve all been down this road before. Our side won before because we were humanists, and because the Autism Speaks crowd was not. We’ll win again, but at great cost to all. Herein, the only thing that needs curing are the hearts of people like Alison Tepper-Singer.
Michael John Carley is the Facilitator of the “Connections” program at New York University for their worldwide autistic students, and he also has a private, Peer Mentoring practice. In the past, he was the Founder of GRASP, a school consultant, and the author of “Asperger’s From the Inside-Out” (Penguin/Perigee 2008), “Unemployed on the Autism Spectrum,” (Jessica Kingsley Publishers 2016), “The Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum…and Beyond!,” (Neurodiversity Press 2021, where he recently became the Editor-in-Chief), and dozens of published articles. For more information on Michael John, or to subscribe to his free newsletter, you can go to www.michaeljohncarley.com.
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