“Profound Autism” Is the Term We Need to Provide Critical Specificity to a Broad Spectrum

“What is your disability, because I’m not seeing one?” a young man on a date asks during an episode of Love on the Spectrum, Netflix’s recent reality show hit. “What does autism look like to you?” the young woman sitting across from him retorts.

Alison Singer

Alison Singer
Co-Founder and President
Autism Science Foundation

For many families struggling with relatives who have a significant form of autism, their experience looks nothing like anything depicted on the feel-good series. Their children will not be part of the dating pool, and their worries are more acute: How can I stop my son from banging his head against the floor before his retina detaches? Who will step in when my daughter tries to swipe food from a garbage can? What will happen to my nonverbal 250-pound adult brother who wanders away from his caregivers and has prompted calls to police?

While shows like Love on the Spectrum are well-meaning, they often do a disservice to those with a more severe form of autism. Their reality is far from an endearing quirk, or a slight impediment that can be overcome with a bit more understanding and patience.

To combat this false perception, and to provide additional support to individuals and families facing this reality, prominent autism researchers have coined a new term for those on this end of the spectrum: profound autism.

Dr. Catherine Lord, a professor at UCLA’s Center for Autism Research & Treatment and a member of the Lancet Commission on the Future of Care and Research in Autism, debuted the term during the Autism Science Foundation’s (ASF) annual Day of Learning in September. Dr. Lord noted that autism is an incredibly heterogeneous condition, and there is a vast difference between a person with high functioning/high IQ autism, who can still function somewhat typically in society, (and do things like appear on a reality dating show) versus a person with autism severe enough to require round-the-clock care. According to Dr. Lord, the Lancet Commission concluded that “useful categories might bring attention to the different needs of different people” and that these categories must be applied “across race, across social class” and be consistent among diagnosticians globally.

I agree that it is imperative to have language and categories that reflect these vast differences. The term profound autism is not meant to further stigmatize people who fall into this category, but to provide necessary differentiation and additional support for people and families who need it most.

I understand the need for this term not only as co-founder and president of the Autism Science Foundation, but as a parent of a child with profound autism. My 23-year-old daughter is thriving in an intentional community for adults with severe disabilities, where she works on a farm and lives with peers. She is happy and productive―a far cry from the misery of wasted years attempting once-size-fits-all mainstreaming.

Today, we speak to many families who talk about the pain of seeing little differentiation between their nonverbal child with profound autism and an adult on the other end of the spectrum who holds advanced degrees and a high-powered job. Many of these families are tired of talking about autism in obfuscating terms: their kids have a clear disability and they need help. This new term can more efficiently address that need.

In her new book, We Walk: Life With Severe Autism, Amy S.F. Lutz writes eloquently about life with a profoundly autistic child. She also pushes back against the neurodiversity movement, whose adherents argue that autism should be viewed not as a disability but simply as a different way of viewing the world.

While I understand why people want to view autism that way—of course it’s painful to think that any child will be viewed as “less than”—it’s important to use precise language to describe people who are at different points of an extremely wide spectrum. This is the only way to ensure that each person receives the type and level of intervention that meets his or her needs.

While most people with profound autism would not be likely candidates to appear on a show like Love on the Spectrum, we all know that everyone on the spectrum deserves love. Introducing new categories into the spectrum, and normalizing the term profound autism, is an important step to providing people the proper support—and love—they need.

Alison Singer is Co-Founder and President of the Autism Science Foundation.

The viewpoints expressed in this article do not reflect the opinion of the Autism Spectrum News Editorial Board or the Publisher, Mental Health News Education, Inc.

25 Responses

  1. Jill Escher says:

    I can’t think of anything more urgent than disaggregating the dysfunctional diagnostic blob of “autism spectrum disorder.” This is not rocket science — basically there is an “autism” that is a patently disabling developmental disability, and an “autism” that affects those with intact daily living skills. Yes, there are some in a grey area in between, but still we can make huge progress toward meaningful diagnostic distinctions.

    • Debra O'Fee says:

      Exactly Ms. Eschler, I have been wondering for years what the hold up has been in providing distinctions in levels of Autism. My 11 year old is what is described as “moderate” “textbook” Autism which has thankfully served him well through the years simply because it’s the most understood. Different from my brother who grew up through the years brilliant and quirky and only diagnosed at age 36 as being on the spectrum. Because he went through all of those years having his needs not met he struggles terribly now at the age of 48. And this still so different from the people described in this article as Profound Autism. For as long as their distinctions and levels are not recognized and treated differently we are failing these people at all their different functioning levels. For all the research and studying what is taking so long separating them all out?

    • Indy says:

      I can see that further distinctions within Autism could be really useful to individuals since what Autism means to them in their life is vastly different. Functioning labels are really harmful and don’t do much to actually indicate experience or different need for support. They symbolise misunderstanding of the community that leads to trauma and discredits someone’s need for support. “Profound” sounds like just another word for a functioning label. This article sounds like, again, the loudest voices are those of parents and this label feels as if it’s for a parent who doesn’t understand. How will this help people with Autism receive support? Will this help the community challenge their false ideas? Being able to have a degree, have strong verbal skills and blend in does not mean that someone’s doesn’t suffer, is happy, and has a good life. Someone might struggle to have a job because of sensory sensitivity, someone might still struggle to cook for themselves, someone might still self harm…It might just be better hidden, less seen, and less uncomfortable for people.

    • Kara says:

      As an Autistic person, *PLEASE* Stop labeling us “functional” and “dysfunctional”. You change the name of the label, but you still don’t treat Autistic People with basic respect. Stop deciding who I ought to be, and take me at face value.

    • Daman Neighbors says:

      This is so damaging. Literally no one can even get an autism diagnosis without significant functioning issues. It’s a requirement. I have a diagnosis and though I am what you would call “quirky” with “insignificant” Autism, I have to set alarms to eat, and still have toileting issues I keep private. I have no support services and therefore my day-to-day living is severely compromised. You are confusing co-occurring disorders (I have those too) with autism. I am covered in self-harm scars, have been beaten and tortured by police despite my functioning label, and cannot work a regular job. I also know people on Love on the Spectrum and their challenges go far beyond being quirky or needing a bit mire understanding-which we are clearly not getting from your ilk. Either we are too “low functioning” to be heard or too “high functioning” to be valid. The result is that you don’t center us and our voices and that’s just fine with you.

    • Debra Y says:

      Hi Jill Escher, this question is for you or Alison Singer, I would value what you know on this. Dr. Leo Kanner first discovered “infantile autism” and the disorder was then called Kanner Syndrome. Is this not the same as “severe or profound autism”? Asperger’s Syndrome is still widely used and accepted and validates those impacted at that end of the spectrum. Giving a name for a specific syndrome for those with severe or profound autism, to me, would further validate the other end of the autism spectrum, where my son falls and so many others. If Kanner Syndrome is not the same as profound autism, then researchers should come up with a syndrome to describe that other end of the spectrum to differentiate it from Asperger’s. Having a name for the syndrome is not harmful, any more than it is harmful to use Lou Gehrig’s disease or Parkinson’s. If you had one of these disorders, wouldn’t you want to know which one you had so you can find the right help and supports rather than being told by your doctor that there is no name for what you have, we now just call all these ‘neurological disorder’?

  2. Xiaoyaya says:

    Can’t agree more. I would define autism as “difference, disability and disorder”. The society including the neurodiversity advocates should respect the difference, acknowledge the disability and create environment to minimize disorder. But it will be better to sub- group autism.

    Do I have your permission to translate this article into Chinese and share in my Chinese social media?

  3. Catherine Pinto says:

    Thank you, Dr Lord. In our family we made the joke that there was classic autism and new autism just like coke products. So no – my son won’t graduate from college, no – he won’t be working a regular job and no- he can’t live on his own. I am happy for all those who have made such strides but it’s not our reality.

  4. Ronda Fein, PhD says:

    My son is 35 years old. He has Autism and not the spectrum sort. I am a clinical Psychologist and was very distressed when Autism turned into a mix of all levels and kinds of symptoms. Everything in life is a spectrum. “The spectrum” as a diagnosis made the understanding of autism unclear and confusing. Wasn’t it enough to say “Autism” to describe our children? Now we have to say “severe”, “low functioning”, or other pejorative terms. A different label for those who had language and other adaptive skills would have made more sense as we had “Aspergers Syndrome” before to define a different group. Using the same label with tons of qualifiers and different descriptions is terribly unscientific. Not to mention that attention and funding is now pulled from those more needy and vulnerable. Rather than using “autism” to describe a large group of children who absolutely need support and help in early education it would have been more helpful to fight to get those highly anxious, sensory, rigid, but verbal children help with a different education label. That’s my brief view as a parent and psychologist.

  5. […] people have more complex autism “fruit salads“ which means the ideas around need certainly to addressed. Terminology does become polarising […]

  6. Evie E. says:

    Autism isn’t a linear spectrum, it’s a circle graph. I think it’d be more helpful to recognize what co occurring conditions are diagnosed along side autism to help people better. Intellectual disabilities, learning disabilities, incontinence, etc are not autism but rather additional diagnoses. It’s a disservice to not recognize how comorbid diagnoses are not a part of the diagnosis but a completely separate diagnosis – even if they’re commonly diagnosed together.

    Continuing to lump them together as autism will continue to further the lack of understanding and resources around autism. What one calls severe or mild adds up to how many additional diagnoses the person has and how well they can mask their autism. It seems not okay to base how autistic someone is off of how it effects others rather than themselves

    • Alere Nōs says:

      Well said, Evie

      • Karen Gormley says:

        17% of the general population have had thoughts of suicide, compared to 66% of Autists with a functional label of “mild, level one or Asperger’s.”
        35% of that particular group have attempted or succeeded in taking their own lives.

        Do you have any idea how many people with “mild autism” self harm on top of that?

        Is a self inflicted detached retina different than one caused by being beaten up at school because you’re weird, or because you are unable to notice obvious red flags that non-autistic people see easily?

        Describing someone in that group as, “quirky and endearing” with issues that can be “overcome with a bit more understanding and patience,” is doing to us exactly the thing that causes us to take that route. It reinforces the ignorant and highly damaging belief in the general population that we are able to do almost everything that you can.

        There is no help, and the understanding from NT people that you yourself say will help us overcome our difficulties is entirely and not unironically missing from your article. People who are merely “quirky and endearing” don’t kill themselves.

        • Maddison Hind says:

          Well said. I did not go throughout 18 years of my life being misdiagnosed, ostracised and unemployed due to my limitations for a non autistic person to decide that my struggles aren’t “severe enough”.

        • Evie E says:

          Is this directed at the original thread, Karen, or towards me? Because I absolutely agree. As an autistic adult who outwardly appears functioning but in reality relies on my spouse to survive, I’ve attempted suicide and self harmed a lot, much of which is influenced by how society treats me.

          Continuing to deny the needs of “high” functioning while denying agency and respect to “low” functioning is literally killing and torturing all autistic individuals.

          • Karen Gormley says:

            Sorry Evie, it was a response to the main article. I completely understand what you’re saying; I can mask to a certain degree but can’t function well enough to look after myself

  7. Luna says:

    Isn’t this author the same person who admitted to contemplating murdering her own autistic child? And has spoken out against the Neurodiversity movement? I don’t think such a person should get a say in what language we use to describe autism.

  8. Jennie Parker says:

    No one is ever to be viewed in the way you have proposed. Perhaps you should think of people, rather than labels or what is in this for you. Looked at your day of learning – how many autistic voices were present?

  9. ED says:

    This article is gross for a number of reasons.

    1. The author decries the representation of Autism in the media as unfair to non-speaking Autistic people but makes no effort to amplify the writing/videos/blogs created by non-speaking Autistic people. Instead the author choses to plug a book written by a parent. How dare you stand up and say ‘what about non-speaking people’ like you care about Autistic folks and representation and then not even offer their voices a chance to be seen? You’re activly part of the problem.

    2. The assumption that ‘high functioning’ Autistic people don’t self harm or experience difficult aspects of Autism is ignorant. Autistic people don’t owe it to you to lay out our behaviors, our lives and experiences for you —not even if they’re on Netflix. You have no idea where any of us have been.

    3. In my country, Autistic people experience an 80% unemployment rate -education or no -so I don’t know what high positioned jobs you’re talking about, but here you’re lucky to get a job period. Enjoy poverty.

    4. Sometimes Autistic people want to see…good or even ‘normal’ things in our lives. Sometimes we want to see oursleves in positive ways. Sometimes we want to find joy in our lives. Sue us. Does that mean that negitive or difficult things don’t exist? Nope. But I’m gonna be Autitstic all my life -there’s no getting off this ride -so I might want to find something enjoyable while I’m here.

    I’m Autistic and I’m sick of non-autistic people thinking they have this hot take about Autism when they’re just creating a Haves vs Have Nots mentality. None of us on the spectrum are getting our needs met. Not. One.
    Especially when your article is just a thinly veiled plug for another non-Autistic person’s book about us. You didn’t really care about non-speaking people’s voices or how Autistic people are seen. If you did you’d have found a book by a non-speaking Autistic person and plugged that instead.

    Do better.

  10. Julia says:

    Thanks for the article! Can we please translate it into Russian? With all the credits of course!

  11. Eleanore says:

    Three things:
    1. “the neurodiversity movement, whose adherents argue that autism should be viewed not as a disability”.
    I guess that statement flies well with people who never listen to actually autistic people – but it’s a (deliberate?) misrepresentation. The *social* model of disability applies. Autistic people, whatever their profile, are disabled. We have disability done *to* us, by NT-dominated society. The neurodiversity movement has never said “autistic people aren’t disabled” – but that movement is dominated by autistic people, so it’s not surprising you’re not paying attention.

    2. Non-speaking autistic people, and those with significant care needs and intellectual disabilities, can speak (or sign, or type etc.) for themselves. If you’re not listening, why not? They’re the experts on their lives – NOT their NT family members.

    3. Stop minimising the struggles of so-called “high functioning” autistics. If you’re not a close family member, an ER doctor/nurse or police officer, you likely won’t ever see the fallout from all that “high functioning” – but that fallout is real. Is going through life with absolutely bloody awful mental health, having frequent burnouts and breakdowns, self-harming and possibly suiciding – a “quirk”?

    Fundamentally, this article is *profoundly* indiffererent to the wellbeing and the opinions of autistic people, whatever their profile.

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