The challenge of autism labels
There's still no consensus among the experts
As I disclosed in a Science editorial a few weeks ago, I am autistic. I got my diagnosis late in life, but since I have been discussing it, a lot of my friends have said they always knew. Maybe I did, too. That’s a topic for another column.
In my journey to disclose this, I talked to a lot of outstanding experts, which is the advantage of being the editor of Science on such a journey. One thing that became clear: how to talk about the different parts of the autism spectrum is contentious and still mostly unresolved.
When I first heard someone say I might be on the spectrum, it was suggested by a respondent in a 360 work review that I had Asperger’s Syndrome. The person carrying out the review was qualified to validate this, which is how I got an official diagnosis of being on the autism spectrum. This was several years ago, when the term “Asperger’s” was on the way out but still circulating.
Historically, the term Asperger’s Syndrome is named after Hans Asperger who was one of the pioneers who first described autism. Compared to Leo Kanner, the other autism pioneer, Asperger had a better view of autism. Kanner viewed autism as the result of poor parenting (mostly mothering) and recommended harsh therapy. Asperger recognized that autism was biological and should be treated (at least in some cases) with compassion. Hence, “Asperger’s Syndrome” came to describe individuals who did not have delayed speech as a child and were able to have independent lives. This was a convenient way to differentiate these individuals from those who needed care and support throughout their lives.
Eventually, as the history of this continued to be described, Asperger took on negative perception because he was in Austria during the start of World War II and referred some autistic children to Nazi euthanasia. Asperger’s Syndrome was phased out partly because of this. Asperger’s Syndrome was sometimes confused with “high-functioning autism.” This eventually went out of favor because “high-functioning” was disrespectful to those with more severe autistic traits who wished to be accommodated as having a difference rather than being treated as having an illness that needed a medical cure, e.g., implying that they were “low-functioning.”
Long before I learned I was autistic myself, I experienced a lot about this as the chancellor of the University of North Carolina. UNC is a place where the renowned autism center TEACCH was born under the leadership of Eric Schopler. TEACCH was very much on the side that autism is a difference to be accommodated and rejects what they refer to as the “medical model" where autism is something to be cured. Many passionate parents and patients received strength and benefit from TEACCH. Meanwhile, UNC is home to outstanding scientific research on autism lead by Joseph Piven who is a researcher who studies autism genetics and neurobiology. When UNC tried to centralize its autism programs, I heard from many TEACCH families and learned of the long-running disagreements between the two sides. My first instinct was that it was great that one side worked for some folks and the other side worked for others and people could just choose, but the non-medical side views the medical side as disrespectful in characterizing autism as a disease to be cured, and a simple resolution was not in the offing.
These discussions were in my mind when I first learned of my autism diagnosis, which is one reason why it was several years before I started talking about it. I didn’t want to be disrespectful to patients and families who didn’t have the resources and opportunities that I had. I have such admiration for these folks and would only want to help.
I asked lots of people how to deal with this and got different answers. The DSM-V, in eliminating Asperger’s as a diagnosis, concluded that everyone had autism spectrum disorder (ASD) with the word “spectrum” taking care of all of this variation. But Simon Baron-Cohen, one of the leading experts for sure, said he doesn’t like the word “disorder,” because it still implies that autism is always a disease to be cured rather than accommodated. Temple Grandin told me it was important to differentiate those with speech delays as a child, so she says, “socially awkward, no speech delay.” SANSD? Meanwhile, many autistic self-advocates feel strongly that these distinctions shouldn’t be drawn at all, because they imply that there is “good autism” and “bad autism.” Here’s a tweet I got from one of these folks:
This week, I’m out with another editorial that discusses an extraordinary package of science that we got from the PsychENCODE consortium. These papers explore the genetics of a number of neuropsychiatric disorders, such as bipolar disorder, schizophrenia, and ASD. Dazzling techniques like single-cell sequencing show new ways to classify and subtype these disorders. I guess it makes sense that I’m sympathetic to both poles on this. On one side, you have amazing advances in neuroscience and on the other, you have an autistic community that inspires me with its strength and compassion.
I looked for common ground between the two poles and found two things. First, a biological description of autism is crucial for the neurodiversity movement, which posits that autism is a biological difference. This directly refutes the idea that autism is a result of poor parenting. The second is that autism can co-occur with a number of other conditions, such as epilepsy, anxiety, depression, and gastrointestinal problems. If the advances in neuroscience allow for the identification of these co-occurring conditions — which can be treated with drugs — that would provide a way for better treatment of autistic individuals. Both Simon Baron-Cohen and Laura Klinger (the executive director of TEACCH) agreed with me about these two points.
This won’t bring the two poles together. There are passionate folks, including physicians and parents, who believe that autism is a disease and deserves a cure; there are passionate folks on the side that says autism is a difference that should be respected and supported and doesn’t need to be “fixed”. My view as an autistic person is that even though I passionately agree that autism is a difference to be accommodated, neurodiversity can only benefit from greater understanding of the origins and biological description of autism.
As the father of a highly gifted autistic son and (likely but undiagnosed) person somewhere on that spectrum, I am about as certain as I can be that autism is an inborn characteristic that has nothing to do with good or bad parenting. What we can do as parents is recognize that all neurodivergent people need help and guidance to navigate in a confusing and over-stimulating world.
I got the ASD as well. Also diagnosed later in life. I function relatively well. I finished a degree, got a job. But since I got a job I walked against my limits and now I am having a burnout.
And I am a mild case. But in the community of ASD. Pretty much 70% of the people have it way worse. They can't work, they can't function well in society. But in stead of trying to help those people navigate the social vagueries in life, the activism movement is trying to do the impossible, which is forcing everybody to accept and accommodate people with ASD. And whilst that is a noble goal. It is near impossible. While some poeple will treat us better most won't. Most people don't even know of the existence of the neurodiversity movement. Let alone the rest of what the activism part expects of others. I think the focus is way too much on forcing others to accept people with ASD and way too little in helping people with ASD navigating the complex, uncertain and vague social world. When I look at all the supposed self-help out there, it's all about "accepting ASD, ASD hides a lot of intellect, people with ASD are very trustworthy. Good with detail and so on. But I find very few that try to help people with ASD specifically with what makes their lives hard.
And I am not even starting about those on the "spectrum" that have it so severe that they can't even communicate effectively and will be dependent on their parents for the rest of their lives.
A spectrum is all nice and well but in hides so many levels of severity that the movement can never actually find decent agreement on what to do for everyone. From what I gather of those that don't function well, there is little or no help for them. Not from the movement, not from all those nonprofits that supposed to help people with ASD. Not from from all those psychologists that just prescribe CBT for everything, or EMDR because everything is trauma. But in the end, those things only help a few for short durations, but the majority of those that are at home, living of a minimum income that the government provides and can't find work, or can't last long at a job. There is very little that helps them. And all that focus on acceptance of ASD. Gives nice feelings of belonging within those groups of those that preach to the choir, but in the end they are not helped in finding a way in live that does not expect them to act like others, or try the impossible of forcing everyone around them to act like they are accepted everywhere.
I think the focus should move a bit more to help people with ASD that do not have a voice, because they have no position or have no means to speak up, or can't actually speak in a way that many can understand.
I have talked to some in the neurodiversity movement about this and I get brushed aside, according to them all I say is myth and all is well. I think this pointless focus on philosophies is not doing anything and just distracts from what is important. How to help those who actually need it.
And yes I am frustrated about the movement and am saddened about the focus always being with those people with ASD that have PhDs, have jobs in It and earn a decent living, have a partner, have children and so on. But what about all those people that do not have this, and cannot find a way in live without decent help? Maybe focus a bit more on that.
But now I'll stop my rant of cynicism. I am just dissapointed and thought I'd vent my frustration here.