Uta Frith Would Have Diagnosed Me With Asperger’s. Now She’s Not So Sure.

Dispatch from her home in Harrow-on-the-Hill, London

Dame Uta Frith — along with her husband, Chris — has done some of the most important research on autism. I have read many of her papers, and cite her work in my upcoming book, Leading with Autism. She has recently waded into the most contentious question we have, which is where does autism end and personality begin? She is getting enormous backlash from the autism community for concluding the right answer to this is that the autism label should be used sparingly and especially for those with large barriers to communication. If she succeeded at convincing the scientific community of this, it would put many people currently diagnosed outside the autism category.

When I wrote to Uta to ask for a comment for this column and noted that I was spending the month at the Science UK office in Cambridge, she invited me to her home in Harrow-on-the-Hill, London for lunch. Even though I disagree with her proposal, I was eager to learn why she was doing this at age 85 and to find out more about the scientific basis for her claims.

Though sometimes contentious, the spectrum is broad

I’ll go over more of the history in my book, and Steve Silberman did even more of it in his much bigger book, Neurotribes, but the quick version is that even in the earliest days of autism, it was noticed that some autistic children were verbal and did not have an intellectual disability. In fact, the very first person diagnosed with autism, Don Triplett, eventually traveled the world and led a fulfilling life, as described by John Donvan and Caren Zucker in their book and documentary, In a Different Key. And it was always known that defining who was autistic was going to be contentious. Lorna Wing first described those of us who have a high load of autistic traits but no intellectual disability as having Asperger’s Syndrome. She later told Steve Silberman she knew she was opening Pandora’s Box, because Asperger’s, she said, “shades imperceptibly into eccentric normality.”

The official word on all of this evolved. In the DSM-IV, there were subtypes of autism where Asperger’s was a separate category. This solved a problem, because Asperger’s doesn’t have the word autism in it. The other two categories were autism and PDD-NOS, which stands for “pervasive developmental disorder, not otherwise specified.” The simplest way to understand the difference between the two is that autism would have a severe profile (now sometimes called “profound autism”) often involving intellectual disability and perhaps self-injurious behavior, while PDD-NOS was for “higher-functioning” individuals but those who didn’t start speaking until much later than normal.

Nevertheless, in the DSM-V, it was decided that there would be “autism spectrum disorder” for everyone with three levels where Level 1 required the least support and Level 3 required round-the-clock care. This led to an explosion in Level 1 diagnoses, and rather than calling these folks Asperger’s, they were referred to with the word autism. Thus, the word “autism” was given a very high burden - to describe folks with challenges in social communication and repetitive thoughts but who can mostly function on their own all the way to children who are often inconsolable and harming themselves.

This was a lot of burden to put on one word. But at the same time, those with Level 1 autism who do need support were given great comfort, agency, and multiple ways to find support. Sadly, though, the politics around who gets government recognition and support led to infighting between those on one end who view all autism as one thing and those who view children and adults with the highest support needs as being most deserving of the label and the services.

The science, in my view, shows that both of these extreme views are wrong. Genetics and other biological measurements show that there are distinct differences among autistic folks with different profiles. At the same time, the patterns of social communication challenges along with repetitive thoughts and behaviors are similar across all of the profiles. The difference in my mind is that some of us can read, write, and talk about our autistic traits in a way that allows us to decide how we want to situate ourselves in the world and what to expect from society while others, who are clearly less fortunate, are not able to do that. But there are lots of different views on this because there is no biological test that would provide a clear answer, and that will always leave this somewhat subjective.

Dame Uta enters the chat

Frith has found herself immersed this controversy since writing an essay in Psychological Medicine suggesting that the word autism has been applied too widely, specifically to those of us with relatively lower support needs. The attention on this escalated significantly when she did an interview in The Times in March where she covered her basic case and said she now regrets diagnosing and advocating for people with lower support needs as having Asperger’s.

She now believes that the autism label should be used much more narrowly, and mainly for folks with very severe communication challenges. As she told the Times in March:

“Having a conversation with someone with autism is likely not to feel fluent, but to feel stilted or abrupt. So this fluency is a contra-indicator for the diagnosis of autism,” Frith says.

At the same time in March, she did an interview with the magazine TES where she stated that masking, the process of covering autistic traits to blend in, is an idea that “has no scientific basis.” This led her to conclude that most women and girls who were diagnosed late might not be autistic because she doesn’t see masking as a strong enough basis scientifically for a clinical judgment.

Then she gave a more explosive interview to The Times this month where she stated that the British naturalist Chris Packham - who has made multiple documentaries about his autism (initially classified as Asperger’s) — could not be autistic:

“He cannot be autistic in my opinion,” Frith interrupts. “It is just absolutely absurd to me that somebody who can communicate as brilliantly as he does — that is what I call a blatant contra-indication.”

I have a very similar profile to Chris Packham, especially when he’s talking about how his mind can race and how the smallest sounds can disrupt him. He’s done a great job bringing this out in his videos, which I know bring strength to many.

Let’s ask her - my trip to Harrow-on-the-Hill

From what I can find, no one who has done one of the high-profile interviews of Frith is autistic themselves or a scientist who has studied a decent amount of this literature. And even though interviewing her risks further amplifying her ideas, I decided her ideas were pretty well circulated beyond my little Substack. So, I wrote to her, initially just to get a comment, but she invited me to Harrow-on-the-Hill to have lunch with her and Chris.

The scene was the same as described in the recent Times piece, they received me graciously in their very classic London professors’ apartment and we ate lemon cake on the back porch after I talked to Uta for an hour.

Although I pushed her on many things, she was open to hearing my ideas. I told her that my focus was in describing autism for people with mostly lower support needs who were getting feedback from their spouses or employers that they didn’t pick up on cues or were uninterested in other people and wanted to improve. That I thought the way to do that was first to explain that there are autistic folks with much higher needs who don’t have the opportunity to read and think about their autism who deserve recognition and support, but then to focus on autistic traits and where they come from and then explain the questions around whether a diagnosis is useful for them and whether they should disclose it if they get one. And then how to decide what to do with all that information. You can read more about that next year in my book.

She agreed with me that the people I try to write for have autistic traits and have challenges, but she has changed her mind about classifying us as autistic, even though she readily admits that she was part of the group that built the spectrum in the first place.

She noticed me staring out the window and not making eye contact, and acknowledged those were autistic traits. She even said there was a time when she would have diagnosed me.

“I actually believe that in the 1990s,” she told me, “I personally would have diagnosed you with Asperger’s syndrome. Now, I am not so sure.”

So, I kind of got a diagnosis from Dame Uta Frith herself, but I guess it’s expired as far as she’s concerned.

Later, I asked her a similar question about Chris Packham. She told me that she regrets telling The Times that he was not autistic, that it was an off-hand remark and she didn’t recognize how newsworthy it would be. She concedes that, like me, she would have diagnosed him as having Asperger’s in the 1990s, but she has changed her mind about whether she would do that now because of his outstanding ability to communicate.

I believe her when she says she didn’t mean to take away his or anyone else’s diagnosis who already has one. I think she is trying to do something that is impossible in today’s world, which is to speak to her colleagues about a scientific matter without speaking to the whole world at the same time. I tried to explain to her that I am kind of a journalist now and I work with real ones at Science and that it’s kind of impossible to do that.

A strong adherence to the medical model

I think that what Frith is exhibiting now is simply a very strong adherence to the medical model of disability with very little regard for the social model of disability. She believes autism can and should be medicalized and that there is a very specific pathology that describes it. She was very critical with me of “lived experience” as an aspect of autism.

But she was willing to engage in scientific debate. When I brought up the research that shows that we’ve long known that autistic traits are present on a continuum and that we know their presentation is very heterogeneous (i.e., “if you’ve seen one autistic person, you’ve seen one autistic person”), she agreed with both. Then I said that means that you’re always going to have a place in this continuum to draw a line between what is pathology and what is personality — and that will always be contentious and contested. She agreed with that.

“And so,” I said, ”it becomes this question of where the line is between who gets the label and who’s just on the other side of the label.” I said the only good way to determine that was based on the experience of the autistic person.

She agreed with the first part. “You know,” she said, “this is the topic I remember discussing as a student when we did clinical psychology: can we ever draw a line between what’s normal and abnormal … This is a question that nobody has got a really good answer for.”

But she doesn’t accept the idea that it could be about experience and environment. She said the only hope was if genetics gave us some kind of marker, but then when I started talking about the genome-wide association studies, she said none of them were convincing yet.

In essence, my position is that given the fact that the boundary is fuzzy and likely to remain that way, we should trust the autistic people and give them the support they need (including using the label if that helps) while she hopes biology will give an effective answer even though she concedes that so far it hasn’t.

Debating overdiagnosis

We discussed her assessment that many people were overdiagnosed or misdiagnosed, and I agreed with her that of course there have to be some because these are human judgments not always made perfectly, but that the societal barriers to getting a diagnosis were also a major factor. She is, not unexpectedly, critical of self-diagnosis, but when I explained that often that happens because no one can get services to get a professional diagnosis, she was more understanding of that.

And she was very conciliatory when I asked whether it was also true that there were many people not getting a diagnosis because of these barriers who truly needed one. So, doesn’t autism also have an under diagnosis problem, I asked? “Yes, it does,” she said, “there are certain people who can’t get diagnosed and should get one.”

She didn’t push back when I said that this leads to a kind of circular logic where we are criticizing a lack of professional diagnoses when there’s no one around to give those diagnoses — and that without the label, most people can’t get the services they need.

Uta Frith and I agree that science doesn’t know where autism ends and personality begins. We disagree about what to do about it.

I have interviewed many physician-scientists working in this area who have views pretty close to Frith’s. In fact, many of them may hold the same views she holds privately but don’t want to wade into the battle. And I believe the medical model has a lot to offer. It has established that autism is not just something in our heads, that those of us with lower support needs have real phenotypes that are different both in genetics and brain structure, and that co-occurring conditions that can be treated are better understood.

But why shouldn’t autistic people — and everyone for that matter — have the benefit of both the medical and social models? That’s the main place where Frith and I diverge. Even someone like me who has most of life’s possible advantages has experienced difficulty from autistic traits imposed by society and the environment — and their preferences for a neurotypical affect. (I told Frith that I had a meltdown at the hotel before I came over; it had to do with technology, as it so frequently does.) Now imagine how that plays out for someone with fewer resources who is also excluded based on their other identities.

Finally, I asked her if people agreed with her, what would she call the rest of us who are no longer autistic. She had noticed I was staring out the window and agreed that was an autistic trait. When I explain why I do that to someone, I just say it’s because I’m autistic. What should I say instead?

She didn’t know. She suggested “autistic-like.” Then she tried “autistic temperament.”

I didn’t think these would fly, and she reluctantly agreed. Since even Uta Frith agrees that science can’t pinpoint the answer, I think we’ll always have to include human experience as a guide. So I’m sticking with autistic.