“The autism spectrum has widened to the point of collapse, affecting how teachers should support autistic pupils in the classroom,” researcher Uta Frith tells Helen Amass in a recent interview, and my response as a late-diagnosed Autistic adult.
Content Warning: Use of dehumanizing and pathological language to describe Autistic people. The contents of this article may be upsetting to some readers.
<sarcasm> Apparently, people like me aren’t Autistic anymore. <sarcasm> *eye roll*
Recently, the Autism researcher, Uta Frith, gave an interview in TES Magazine with Helen Amass that has been shaking up the Autism world.
Generally, I have a rule against calling out people and prefer to call people in while calling out harmful behaviors. However, from a place of authority and power, Frith has made a point of spreading her ignorant and harmful views far and wide, giving dangerous advice. Because of that, I am making an exception to my typical rules of engagement.
The tone of the article was medical and dehumanizing, heavy with pathologizing language, talking about Autism using words like “disorder” and a “pathology in the brain existing from birth”, all while describing the needs of Autistic children as creating an “unprecedented strain on schools ”.
In a clear example, of a non-autistic person, speaking over Autistic people, and denying our lived experiences, Frith even doubles down on her pathological view of Autistic people (and even though she seems to know that many of us reject the word “disorder” when describing the Autistic experience), Uta makes a point to say that “Some people object to the word ‘disorder’, but that’s what I would call it.”
As non-autistic autism researchers often do, there were no discussions around Autistic skills or strengths, and no actual Autistic input or voices were included in the discussion. Stuff like this is EXACTLY why we have hashtags like #NothingAboutUsWithoutUs.
Uta also made a point to question the lived experiences of countless Autistic people, claiming that sensory aids, tools, and supports (that many Autistic people swear by) “have very little scientific grounding”, claiming these critical life-changing supports “may feel good… but not actually be good.”
Although the words “autism epidemic” were not used, the article reads as if it were to create fear of an incoming wave of Autism… a fear that Autistic people cost capital, instead of creating it… a fear that we can’t be exploited by the system, and creating shame around those of us who can’t be extracted from, and instead need compassion and support – which to me sounds a lot like how they spoke about Autistic people in Nazi Germany.
Asperger’s was a label used to determine which Autistic people were useful and which of us were too disruptive to the system, and therefore disposable, and everything Frith said, combined with the current anti-Autistic political climate in the United States, is setting off alarms in my mind (because when they separate us out by who they think is “useful” and who they think is not, it puts our most vulnerable at risk).
If you have the stomach for it and want to read the full interview, I will link it below:
https://www.tes.com/magazine/teaching-learning/general/uta-frith-interview-autism-not-spectrum
For those of you who don’t have the time or energy to give Uta your full attention, I will give you a summary.
I’ve picked out some of the most problematic things Uta said about Autism and Autistic people (or at least the ones that rubbed me the wrong way, as a late-identified Autistic adult).
I’m forcing myself to keep this as short and to the point as possible, and sticking to speaking from my own personal lived experience (as one of the Autistic people Uta thinks would be better served being under a label other than “autism”, and whom she said she “would fight” to limit from using the label of autism (as she claims it should “be limited to those diagnosed in early childhood, under the age of 5”).
This is just my perspective as one Autistic person.
First, as anti-Autistic fear-mongering campaigns often do, this one opens with a discussion on the rising prevalence of people being diagnosed as Autistic, and talks about how Autistic people’s needs are “costly” or will “overwhelm” society’s poorly designed systems that are not inclusive by design. This time, Autistic students’ needs are described as “a rise that has placed unprecedented strain on schools.”
While these “autism-epidemic” narratives often ignore the true reason for the increase in diagnosis (a widening criteria combined with increased awareness and public understanding of what Autism is), this article not only mentions the widened criteria and awareness as a cause of this increase, but actually goes so far as to blame it for the increase (re-framing it as a bad thing so many of us have found out the truth about ourselves).
Uta describes Autism as “lifelong” and explained that the “main features have to do with distinct problems in social communication and interaction. There is also an additional problem with what’s called repetitive, restrictive behaviors. This can present as narrow interests or sensory issues.”
While I do agree with Uta that Autism is a lifelong difference, I reject her description that describes Autistic people as having “problems in social communication and interaction” because I don’t think there’s anything wrong with my ways of communicating and socializing.
It may have taken me a while to find the people (other Autistic and Neurodivergent people) who will accept the way I communicate and socialize, and I may have fewer friends and socialize less frequently than some people do, but I’m happy as I am.
Frith also mentioned ‘restrictive behaviors’ that ‘can present as narrow interests’ (which, in my case, is both my biggest strength as well as my biggest weakness).
Since Uta’s not Autistic herself (based on her own very limited definition of Autism), she only describes this tendency to hyper-focus in the language of weaknesses and struggle.
Sure, my tendency to obsess over things can be a curse, especially if I become obsessed with something detrimental to my mental health or a problem that is too big for me to help solve. However, being obsessed with things at various points in my life has also been a huge asset to me, because when I become hooked on something, and it becomes one of my interests, I suddenly feel an insatiable hunger to learn everything I can about that topic.
My tendency to obsess is why this blog exists:
For the past 10 years, I’ve been obsessed with Autism, Neurodiversity, human rights, and creating a kinder, gentler world for all of us.
My tendency to obsess is what led me to self-publish two books, and then to work with Rebecca on both the Autism, Identity, and Me Workbooks (for children and adults)… my tendency to “fixate” on something “very narrow” calls me to do this work I do, and every day I am grateful for it.
I enjoy spending time on my own, deeply focused on one of my favorite topics, but sometimes my obsessions (even the good ones) can cause me to neglect things (like my body and the relationships I want to maintain with the people around me).
Yes, there are struggles, but there is also great strength (strengths that people like Uta Frith always seem to ignore).
For me, my “narrow focus” is neither good nor bad; it’s just a core part of who I am and what drives and motivates me as a person.
She does the same with sensory issues, which for me can be so bad that they literally cause me to have disorientation, vertigo, migraines, and seizures if I overexpose myself to my triggers, but also come with great pleasure (because with the sensory pain also comes other kinds of indescribably pleasant sensory experiences). However, none of the upsides are mentioned.
If Uta listened to Autistic people, instead of speaking over us, she might know more about what it means to be Autistic on a human level, outside of the gloom and doom medical descriptions that only describe our struggles and trauma.
Frith then moved on to complaining about the diagnostic criteria, complaining that the criteria have become so wide that it “makes a medical diagnosis completely meaningless.” She said:
“Nothing is neatly categorized, and we wanted to include the not-so-typical cases. And so we widened the criteria, and the idea came about that autism isn’t just a single category; it is a spectrum.
But that’s very difficult, because what’s notable about being part of a huge spectrum that we all belong to? We’re all neurodiverse; we can accept this because all our brains are different. But it makes a medical diagnosis completely meaningless.”
However, as someone who was diagnosed late in life, partially in thanks to this widened criteria, I can confidently tell you there was nothing “meaningless” about being diagnosed Autistic. In fact, to me, this diagnosis has meant everything.
Being diagnosed as Autistic at the age of 29 saved my life.
I have always been Autistic, but I didn’t know it for the first part of my life, which traumatized me so badly that I hated myself, had no sense of self, and didn’t even know how to listen to my own inner sense of desire, which left me venerable to manipulation, coercion, and abuse for a large part of my life.
I didn’t know my needs or how to speak up for them.
I didn’t know why life was so hard for me, or why everyone around me always seemed to expect more from me than I was capable of doing (or less than I was capable of depending on the situation).
Society had told me I was too sensitive, too blunt, rude, impulsive, stubborn, rebellious, and difficult… but also “too smart to be acting the way I did”.
Society trained me to ignore my needs, pretend the bright lights don’t physically hurt me, ignore the migraines, the overloads, the vertigo, and the pain, and smile through it all.
I was doing it… until I couldn’t do it anymore, and when I reached a crisis point, and had almost given up on living, I was finally diagnosed Autistic, and it changed everything.
Ten years later, I am almost 40, and I finally know myself, for the first time in my life, ONLY because I was diagnosed Autistic.
I often think about how it could have been nice to learn a lot of the things I’ve learned in adulthood as a much younger person, and how (because of not knowing I was Autistic) I didn’t truly know myself or truly feel comfortable in my own skin for the first half of my life.
Part of me is saddened, because it feels like my life only has really gotten started this past year, because the first 38 years of my life, when I didn’t truly know myself (or how to take care of my needs), it was more ‘survival’ than truly ‘living’.
Uta’s dismissive claim that people like me being diagnosed as Autistic makes Autism “meaningless” as a medical diagnosis completely ignores all of the lives that have been changed or saved through this diagnosis, to whom the diagnosis was far from meaningless. Unfortunately, she’s not done yet.
“I think at least we have two big subgroups: the people who are diagnosed in early childhood – usually before age three or age five, depending on things like their intellectual abilities and language – and another group, diagnosed much later.
Frith continues saying, “This population is different. It is made up of a lot of adolescents, and among them, a lot of young women. These are people without intellectual impairment, who are perfectly able to communicate verbally and non-verbally, but who might feel highly anxious in social situations. They are perhaps characterised mainly by a sort of hypersensitivity….
… Now, I think the people in the second group really do have problems. I would definitely not say they are ‘making it up’. But I would say that these are problems that can perhaps be treated much better than under the label of “autism”. I would fight for that label to be limited to the first group.”
Uta talks about, in her mind, it would be best to divide the Autistic population into “two big subgroups” of “people who are diagnosed in early childhood” and the other group, according to Frith, would be those who are “diagnosed much later.”
It’s almost as if she thinks those of us who were diagnosed in adulthood didn’t displace any Autistic traits when we were younger.
I can tell you that, in my case, I did display many of the stereotypical Autistic traits early on, and in elementary school, I was referred to have testing for learning disabilities done, but (due to stigma) my guardians opted not to have me screened.
I grew up not knowing I was Autistic, and so the expectations placed upon me by the people around me were that I assimilate and do as my peers did. I was pushed hard to keep up and punished, mocked, or scolded whenever I failed to meet those expectations.
Because nobody knew I was Autistic, many of my Autistic traits were viewed and treated as “behavioral issues” that needed to be extinguished.
And even though she does at multiple points mention that Autism has genetic components, she doesn’t even think to mention the fact that if we had Autistic parents (especially if they were unidentified), it’s likely our parents might not have thought there was anything “different” about us because we were “just like them”… and, as the inerview continues it keeps getting worse.
In response to the question “Could an explanation for later diagnosis be that some people, particularly girls, are able to successfully ‘mask’ their symptoms?” Uta replied, “The masking idea has no scientific basis, yet everybody, including the researchers and the clinicians, has been enamoured with this idea.”
Ignoring countless Autistic people’s lived experiences as well as a plethora of scientific research around Autistic masking and its effects that can easily be found online (example 1, 2, 3, 4, 5), Frith continues to spread her ignorant anti-autistic nonsense:
“To me, for example, it’s a contraindicator for the diagnosis of autism if the person can interact smoothly with you in conversation. If a person is autistic, the conversation will often feel stilted or abrupt.”
When I was in elementary school, around the time Uta thinks is an “acceptable time” to be diagnosed as Autistic, I didn’t yet know how to mask my Autistic traits, and had I been assessed, I could have easily been identified (because when I was younger, my Autism was much more visible than it is today).
Back then, I was more impulsive, and fighting everything in me to control an unruly body that didn’t want to listen to me.
Back then, when anxious, I would lose my ability to speak.
Back then, I would have meltdowns…
Back then, I could not regulate…
Back then, I struggled to organize my thoughts and speech, or to know when it was my turn to talk in conversation (and sometimes I still struggle with this), but I’ve learned how to do these things over the years.
Back then, I was bouncing off the walls, vocally stimming, humming, and singing to myself, and I struggled to stop any of it from happening.
If she’d have seen me back then, she’d have been able to tell I was Autistic… but since I almost made it to 30 without being diagnosed, to her, because I learned to mask, I must now be “something else” not Autism… but what?
Uta also claims that “Another contraindicator… is being able to read between the lines in a conversation, and to get irony and humour.”
I actually do struggle to read between the lines in conversations, but to compensate, I tell people to be blunt with me, especially if I feel they’re trying to drop hints, and make a point of surrounding myself with people who are direct communicators – this doesn’t mean all Autistic people struggle with this or that we can’t learn this skill.
I’ve learned many non-autistic social skills over the years, especially recently. I can learn them, they just feel unnatural to me (like I’m learning about another culture’s customs and experiences)… but Frith seems to think we can’t possibly learn these skills.
The myth that Autistic people “can’t get irony and humor”.
As far as understanding humor goes, I can think of several Autistic comedians who are masters of it (though I will admit that I often don’t find funny what non-autistics find amusing).
Maybe it’s Uta, who doesn’t understand Autistic humor, because I find Autistic people’s humor to be great.
While I do use sarcasm, I don’t always understand when other people are joking or being sarcastic (though knowing people well can help, because I can learn to expect sarcasm from people I know who use it regularly).
Uta’s Horrible Advice for Teachers
When asked, “Is there anything that mainstream teachers should avoid when working with autistic children?” Uta gives advice that, if followed, could leave kids with sensory sensitivities to suffer silently in their classrooms.
“If we think about the reasonable adjustments that schools are expected to make, some of the most common requests are around sensory sensitivities – for example, letting a child wear ear defenders or turning down the lights in the room. These adjustments are easy to make, but they have very little scientific grounding.”
Frith continues, “As far as I know, there hasn’t been any research into finding out whether these sensory adjustments actually improve lives. I’ve no idea whether it’s good for the child or not. It may feel good to them, but not actually be good.”
She admits that, as a non-autistic person, Uta has “no idea whether it’s good for the child or not,” but she’s still going to open her ignorant mouth and speak on (over countless #ActuallyAutistic people) as an authority anyway.
Uta Frith has given us a prime example of why non-autistic people need to listen to Autistic people and lift us up… and how some of them really should just shut up, and keep their ignorant thoughts to themselves.
From my experience, as an Autistic person who was encouraged to ignore my sensory issues in school because my teacher would not allow any modifications to be made to the sensory environment, here is what happened to me because of attitudes just like the one above:
In the first grade, when I entered public school, I started having frequent headaches that often eventually escalated to disorienting and painful spells of head pain and nausea, then, eventually, vomiting, and I would go to the nurse whenever the headaches would start.
Because I didn’t have a fever, the nurse said I had to stay in class, even though I was in pain, so I learned to ignore my pain, and had headaches regularly that were just my normal until I was diagnosed Autistic at the age of 29, figured out my headaches were tied to my sensory issues, and started avoiding my triggers, and now I almost never get headaches unless I over-stress/overwork myself.
The headaches (that used to happen several times a week) I was trained to ignore, as Frith would have me do, no longer plague me, and all I had to do was avoid my sensory triggers.
Being in sensory overload, for me, creates a state of hypervigilance, which in itself can cause any person to have negative physical and mental health impacts. It made me not feel hungry, feel on edge, and have more meltdowns (because I was always ready for a fight). Plus, besides all of that, it feels horrible to be hypervigilant, and it is not something I would wish on anyone, especially kids in a classroom (and being in that state makes it very hard to learn).
Regardless of what Uta Frith says, having my sensory needs met and not being expected to sit in hostile environments greatly improved my quality of life.
Ideas like what Uta’s is spreading are exactly why I had to go through years upon years of debilitating pain, which, had I just been able to have sensory protection (or not expected to sit under fluorescent lights five days a week), would have been completely preventable.
YEARS OF NEEDLESS PAIN!
This is EXACTLY why Autistic people should be the ones leading the conversation about Autism, and why people like Uta Frith need to step aside and shut their mouths.
Link to full interview (CONTENT WARNING) here:
This post is also on Patreon and Substack.
