Twitter has been simply abuzz this week with the publication of a controversial-at-best article by Alison Singer about the idea of something she calls ‘profound Autism’. The focus of this label seems to be a subset of Autistic children with little spoken language as well as aggressive or self-injurious behavior, with co-occurring intellectual disability. Although I’m sure it will be one of many, I couldn’t read this article and not write a response.
Now, you may be thinking, Ashley- Singer is the president of the Autism Science Foundation as well the mother to an Autistic child. Who are you to write a response to this?
Excellent question.
I need to acknowledge upfront that I am neither of those things. However, I am a licensed clinical psychologist who specialized in assessing, treating, and researching exactly the population that Singer wants to describe as ‘profound Autism.’ (For more about that see this post.) Prior to being a psychologist, I was a behavior technician (I know, I know, read this before you come for me), at a school for kids like the ones Singer describes and I did a rotation after this at one of the most well-known clinics for severe behavior management for Autistic children in the country (the kind of place you only end up when behavior is so severe and dangerous that you’ve exhausted all other options). Based on my experience with this population I've written my own thoughts on this article below. Singer’s assertions are reproduced below, and my comments and responses are in italics following each paragraph. I really support radical kindness and I always try to be fair in these posts even when I’m offering criticism of someone else’s actions or opinions so I’ll point out things I both agree and disagree with.
Singer’s initial article is in “quotes.”
My thoughts are in italics.
“Earlier this month, I attended the Autism-Europe International Congress in Kraków, Poland, where the theme was “Happy Journey Through Life.” Although this sounds like an admirable goal, I would not choose the word “happy” to describe my daughter XXX’s life with profound autism, nor would many other families who struggle with the day-to-day challenges of life on the profound end of the autism spectrum, a reality that is largely invisible to mainstream society.”
I agree, there are many Autistic people who don’t currently have happy lives. BUT- I think that was why it was the focus of the conference. Like, the theme of ABCT this year is “Emergency & Disaster Preparedness and Response: Using Cognitive and Behavioral Science to Make an Impact” because psychological science wants to focus on bettering emergency and disaster preparedness, not to celebrate how empirically informed our emergency response already is.
I agree that we need visibility for non-speaking, partially verbal, and intellectually disabled folks! They are an important and valuable part of the community!
“XXX (I’m redacting her child’s name because I’m not her parent or guardian and try not to use people’s names without their consent when they’re not putting their name out there themselves) is minimally verbal and suffers from painful self-injurious behaviors, intellectual disability, aggression, anxiety, sleeplessness and seizures. Her frequent aggressive outbursts make it hard to involve her in community activities. Although she is often content and enjoys working on a farm, no one who witnesses her pulling her own hair or headbutting the wall would call her “happy” during those episodes. And my family and I are not “happy” that she will require 24-hour care and supervision for the rest of her life.”
No major issues with this paragraph. I get it. I think a lot of families stress about who will care for their children after their parents are gone. I do think we as a society need to reshape the way we think about needing lifelong care and take complete independence off the ludicrous pedestal we’ve put it on. There are a lot of people who will need care in various forms throughout their entire lives, and it doesn’t have to inherently be a bad thing. For more on this check out this great YouTube channel by Shane and Hannah Burcaw. They talk a lot about how Shane is someone who needs lifelong caregiving and work hard to normalize it. That said, I think a total societal shift in mindset is a lot to ask from a mom who maybe just wants her kid to be able to pick out a shirt so she gets a pass from me on this one.
“My experience at the Autism-Europe International Congress — and my experience as a parent of a child with profound autism — makes me more convinced than ever that we need to bifurcate the diagnosis of ‘autism spectrum disorder’ and add a new diagnosis of ‘profound autism’ to better serve this vulnerable and underserved population, which is consistently overshadowed by the higher-functioning members of the autism community.”
One thing I can agree with- ‘bifurcate’ is a cool word. 10/10 points for usage. Everything else here I have some disagreement with. This will continue for the rest of the article but I think Singer glosses over the heterogeneity in her potential ‘profound Autism’ group that made the field lump everyone into ‘Autism Spectrum Disorder’ to begin with. The implication throughout this article is that ‘profound Autism’ would be a group with language impairment, intellectual impairment, and some form of dangerous behavior (like aggression or self-injury) but what about folks with intellectual disability but no language impairment or dangerous behavior? What about verbally fluent folks with some form of severe dangerous behavior? Who exactly is ‘profound’ enough -and in what domains- to go in this new category and who gets to make that call? Honestly, me. Probably me. If something like this goes into effect, I’m the one who gets to sit in my office with families and decide who gets access to this label/has it forced on them (depending on the family’s perspective) and deal with all the related reactions. So, I definitely get an opinion on this.
“The first mention of “profound autism” in the scientific literature came in 2021 in The Lancet Commission on the Future of Care and Clinical Research in Autism report. The commission was co-chaired by Catherine Lord, George Tarjan Distinguished Professor of Psychiatry at the Semel Institute of Neuroscience and Human Behavior at the University of California, Los Angeles. I also served as one of more than 30 commissioners. The report stated that the term “profound autism” is critical to distinguish people who have high dependency needs from the more verbally and intellectually able population of people with autism. In reviewing several datasets of people with autism, the Lancet Commission estimated that close to 50 percent of the autism population falls into the category of profound autism. This means that for every autistic person trying to get a job at Microsoft, there’s also one who cannot grasp the abstract concept of what Microsoft even is or does.”
Okay, again, that’s just not the case because of the amount of heterogeneity in the population. There are some non-speaking folks who have average IQ and certainly know what Microsoft is, there are some folks who are speaking who really struggle because since they can speak everyone treats them like they should know what Microsoft is, but they just don’t, nor do they care. And far from the extremes of working at Microsoft or not grasping the concept of Microsoft, there are some Autistic folks who just, I don’t know, work at Anthropologie and take walks with their dog in the afternoon. Just regular, boring, beautiful lives. It’s possible for disabled folks to have happy lives. We just might need to shift our understanding of what a happy life is. And before anyone comes for me- I know I haven’t dealt with the issue of dangerous behaviors yet. Stick with me, I’m getting there.
“Families like mine who face profound autism have advocated for this distinction for quite some time. We strongly believe that the breadth of the autism spectrum has become unwieldy, and the phrase “autism spectrum disorder” has become such a big-tent term that the people under that tent often have little in common with one another. Autism can mean genius or an IQ below 30. Autism can mean highly verbal or nonverbal. It can mean graduating from Harvard Law School or ‘exiting’ high school with a certificate of attendance. If we are going to be able to personalize our approach to care, as the Lancet Commission report suggested, we need terminology and language that are specific and meaningful, rather than terminology that lumps everyone together.”
I agree! We don’t need to lump everyone together! But I don’t think we solve that problem by creating more lumps. I think we need Person (and family)-Centered Care. Person/Patient -Centered Care is defined by the World Health Organization as a care philosophy in which “the overall vision for health care is one in which individuals, families, and communities are served by and are able to participate in trusted health systems that respond to their needs in humane and holistic ways. The health system is designed around stakeholder needs and enables individuals, families, and communities to collaborate with health practitioners and healthcare organizations in the public, private and not-for-profit health and related sectors in driving improvements in the quality and responsiveness of health care https://www.who.int/publications/i/item/9789290613176. ”
Autistic advocates, as far as I know, are generally in favor of Person-Centered Care, and the approach that care meets the individual wherever they are as far as what their support needs are from anything like independent living supports, to intervention for dangerous behaviors to funding so families can afford medication for seizures. More on person-centered care in my home state here: http://www.personcenteredpractices.org/mission.html. The label ‘profound Autism’ won’t help us. It will just make it so there are two ill-defined lumps instead of one. Hardly an improvement.
“The neurodiversity community’s success at drawing attention to its issues has led many without deep experience with autism to conclude that those issues are representative of everyone. To the broader public, the word “autism” now only describes the more verbal, traditionally skilled, visible end of the spectrum — because people who meet those criteria are able to have a voice, attend conferences, represent themselves at policymaking meetings and appear in the media. The result is that autistic people with severe intellectual disability and the most challenging behaviors have become invisible and been left behind.”
This doesn’t feel true to me. If anything, I think the general public still thinks of a non-speaking little boy rocking back and forth when they think of Autism, but I recognize that maybe I’m too ensconced in my little Ph.D. bubble to know this. So, I’ll give Singer this one on the possibility that I guess this could be true. Also, 10/10 points to me for using the word ‘ensconced.’
“This blind spot was painfully illustrated to me at the Autism-Europe International Congress, where the vast majority of delegates represented the higher-functioning end of the spectrum and yet claimed to speak for everyone with autism. Many delegates became visibly angry over some of the terms presenters used in their talks to describe autism traits, such as “patient,” “disability” and even “intervention.” Many took to social media to bash these scientists; others walked out of the room. But these words are necessary and correct. My daughter consumes medical services; that makes her a patient. She has a disability; if she didn’t, she wouldn’t qualify for services. The same is true for so many other families who suffer (yes, suffer) from profound autism.”
I actually genuinely agree with this. I don’t think “disability” is a bad word, especially when considered in the context of the social model of disability. Because of the way our society is set up, right now Autism is a neural difference that is disabling, but it’s an Autism/Society interaction thing, not just an Autism thing. I also think the term patient is totally fine, but I think Neurodiversity Advocates would argue that Autistic people are patients for things like anxiety, seizures, stomach issues, aggression, and generally things that may be related to Autism but not patients for Autism itself. Same with the word ‘intervention.’
“There were several instances at the conference in which the presenters gave evidence of this growing dichotomy. The most vivid was the keynote address by Brian Boyd, William C. Friday Distinguished Professor in Education at the University of North Carolina at Chapel Hill, titled “Reconceptualizing repetitive behavior in autism.” Boyd presented two videos to represent different types of repetitive behaviors. The first showed an autistic adult who had parlayed his special interest into a job, and who spoke eloquently about the challenges of socializing and how he values his alone time. The second video was preceded by a trigger warning, greeted with “oohs” and gasps from the audience, and immediately criticized on Twitter, as it showed a profoundly autistic child engaging in self-injurious behavior.
This video reflected a normal day for many families with a profoundly autistic child, who can’t, as Boyd suggested the attendees might do, “cover their eyes and ears” to hide from what is happening around them. If those who purport to represent and speak for the full autism spectrum can’t even observe, for a few seconds, the daily behaviors many with profound autism experience, how can they advocate for their needs? Boyd rightly pointed out that these two people need vastly different types of interventions, as they face vastly different situations. What he described were, in fact, the two extremely different types of autism.”
Okay, again, I feel like I have some right to comment on this. I do need to acknowledge that I’m not a parent of a child with serious aggressive or self-injurious behaviors but I have worked extensively with many of these children. There have been periods of my life where I’ve been hit, scratched, kicked, bitten, spit on, defecated on, hair-pulled, and head-butted regularly. Sometimes all in the same afternoon. I’ve also watched kids bite their own arms bloody, and head-bang to the point that they were in danger of retinal detachment. I’m certainly not looking away and I can confirm that it is absolutely horrible, draining, and heartbreaking to be the person in charge of a child’s safety when this level of dangerous behavior is present. It's so human to want to look away when we see pain, but I don't think that's the biggest issue with showing this kind of thing to a crowd at a conference. It's a violation of a child's privacy, especially if their face isn't blurred. These kids are little humans who have the same rights to privacy as we all do. And there are ways around this! Plenty of self-advocates have posted videos to YouTube (of themselves in vulnerable moments) for the express purpose of showing the public what the reality of these behaviors can be like, so I don't think generally that the Autistic self-advocate crowd is trying to hide this reality.
Now, this is a tangent and not directly related to Singer's article, but I also just need to say on the topic of dangerous behaviors, let’s not pretend that because the situation is complicated it absolves therapists and caregivers of all moral culpability. I absolutely look back on things I could have done differently with patients. I ignored them when I should have comforted them and vice versa. I escalated things when I could have de-escalated with what I know now. And I acknowledge both that these things were mistakes and that they were the best I could do at the time. I try to accept the dialectic.
The interventions we have for dangerous behaviors for all kids right now (not just Autism, not just ‘profound’ Autism) are completely and totally lacking and this means kids and their caregivers endure trauma. That said, I think when treating aggressive behaviors people are too quick to take the Machiavellian approach of "the ends justified the means". I’ve been in situations where I know I did the only thing I could think of to keep a child safe and I can acknowledge that. At the same time, I also need to acknowledge that for the rest of my life I will be someone who put a 10-year-old in a three-person chair-hold and I actually do need to grapple with what that means about myself and what that means about the world. I don’t let myself do the comfortable thing of thinking it’s the only right way to intervene for this ‘extra-special’ population just because it’s what I did and I need to preserve the way I see myself. I did it, it was the best I could do, and it may have been wrong. We need to be willing to sit with this discomfort to actually make progress in helping children with dangerous behaviors.
“Similarly, in her keynote address, Lord showed data on the outcomes of people with autism, based on a 30-year longitudinal study. The outcomes of those with low IQ scores, who likely would qualify for the profound autism diagnosis, were drastically different — and far worse — than the outcomes of those who are higher functioning. And when asked how people in the study felt about their future, verbal young adults cited “mood, anxiety and depression” as core factors in their happiness, whereas the parents of less verbal young adults described “difficulties with aggression” as the key determinants. In short, if we are going to meet the needs of people with different types of autism, we need very different types of interventions based on their functional level.”
This to me actually feels like both groups are saying the same thing. Mood, anxiety, and depression underlie many aggressive and self-injurious behaviors so overall, everyone seems in agreement that we need better mental healthcare for Autistic people.
Also, what outcomes? What are the outcomes that were worse? Job stability? Housing? Nutrition? Give me specifics. And yes, we need to develop different interventions based on each patient’s skills and functional levels but again, this is just Person-Centered Care which is actually totally in alignment with what adult self-advocates seem to want.
“One of the themes of the Autism-Europe International Congress was a call for greater participatory research. At the meeting, this meant research being done by and with input from high-functioning adults with autism, but not from parents.”
My understanding is that it doesn’t mean- ‘but not from parents.’ It just means folks want the balance of voices to have a higher proportion of Autistic people than parents, not that parents can’t be a part of the conversation.
“Much of the research the delegates called for focused on mental health and well-being. But when it comes to the type of research needed, there are dramatic differences in priorities between verbal autistic adults and parents of profoundly autistic people, as Lord articulated. According to several delegates and posts on Twitter, any “intervention” research — behavioral or pharmacological — is “ableist,” “neuronormative” and “pathological.” Yet this is exactly the type of research families of those with profound autism want, need and deserve. On the other hand, in the profound autism community, studies of determinants of “autistic flourishing” are viewed as luxuries, as families struggle to meet their children’s basic needs and keep them physically safe.”
Autistic flourishing is not exclusive of all the basic needs that non-speaking and intellectually disabled folks need assistance with. When we think of Maslow’s hierarchy of needs there is an understanding that one cannot flourish without having one’s basic needs met. So I think with a focus on flourishing, ensuring that the basic needs of all Autistic people are met is the first step and I don’t think self-advocates would disagree with me on that (but, I acknowledge that I’m an Allistic lady so if some self-advocates do disagree- totally open to hearing it).
Also, mental health care is needed for the ‘profound Autism’ group Singer is trying to describe here and I think a mental health/trauma-informed approach to dangerous behaviors is the actual way of the future.
“Another theme at the conference was the need to use “neutral,” non-threatening language. Several presenters actually amended their slides at the last minute to remove any trace of language that might get them called out by neurodiversity advocates on social media. Soon, they may be afraid to present scientific findings at all, for fear of being canceled.”
Yes, no one wants to be at the mercy of the mob. But honestly, as a millennial, I am so sick of hearing grown adults fret about cancel culture. Fame and public opinion are fickle and volatile. This is not new information. You have the right to express yourself, your work, and your views in a public forum but you have no say in how people react to said work or views. If you genuinely believe that something is worth saying, say it and accept that there will be consequences and those consequences are worth it if it’s worth saying.
“There is nothing beneficial or even neutral about cleansing the words needed to describe the scientific and practical realities of autism. Such so-called neutral language robs the community of the ability to even describe the day-to-day lives of people with profound autism. Although it is regrettable that some people are triggered by reasonable terminology, no one should have the power to censor language to exclude the observable realities of autism. Scientists and advocates need a full semantic toolbox to describe what is happening in the real world. Pretending people with profound autism don’t exist by eliminating language to describe their symptoms is itself ableist. Unlike the attendees in Boyd’s presentation, we cannot cover our eyes and ears to the reality of profound autism.”
I disagree and think there are plenty of accurate words we can use to describe the population Singer is trying to capture that don’t involve potentially stigmatizing language. Some examples, are ‘non-speaking,’ ‘partially-speaking,’ and ‘specific support needs are…’ I think generally most people are also fine with terms like ‘aggression’ and ‘self-injury.’ And yes, one day people will probably decide that ‘non-speaking’ or any of these other terms are hurtful or damaging and we’ll all have to work on switching to something new because that is what language does. It’s the nature of what it is. It grows, evolves, and changes as we assign cultural and societal significance to it. It’s practically a living being. And if you’re going to tell me that it’s too hard to change something you’ve always done or that you can’t remember to use the new words then I think you need to have a moment of empathy for what Allistic people regularly ask of Autistic people.
“After speaking to many of the congress’ delegates and presenters, it seems clear to me that the broad autism community, as currently defined, will never agree on priorities, needs or language. It is time to admit that lumping everyone together along one spectrum has created rancor and ill will. There are real-world implications for people with profound autism when high-functioning advocates seek to defund and deprioritize medical research, block access to treatment and clinical care, censor necessary and accurate scientific language, and advocate for policies that cause real harm to those who will not and cannot ever live independently. Only by returning to at least two separate diagnoses can we begin to meet the highly diverse needs of both groups.”
Overall, I don’t mean for this post to come across as me bullying a traumatized mom. Clearly, the lack of support that was available for her and her daughter growing up caused profound distress and heartbreak for both of them. But I disagree that creating a new subgroup of folks with “profound” Autism is the answer because from what I’ve experienced, these children need the same things that all Autistic people, and most Allistic people need. They want to feel unconditionally loved, they want to feel safe, they want to feel good in their bodies, they want to have their mental health needs met, and they want to have fun with their families. An increase in mental healthcare, accommodations, and support for Autistic people that self-advocates are fighting for will have positive and applicable consequences for children with high support needs. These children don’t need a new diagnostic label to access services, they need a world that’s willing to share what we already have and tailor it to meet their needs. It is time to embrace the group the Singer wants to call ‘profound’ Autism, by welcoming them to the resources we’ve developed with the words we already have.
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