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I don't have the words, I'm that frustrated. Thankfully Aurora Consulting does.

Uta Frith is at it again.

She has published a new opinion piece because apparently the Autistic community shouting loudly at her last time isn’t stopping her. I thought long and hard yesterday about whether or not to write this post, but I think it’s important to share neuroaffirming info.

Instead of doing a line by line dissection like I often do, I’m going to try and look at broad strokes. Line by line next time an article needs it though.

Uta starts talking about impairments and deficits but I want to say that I don’t believe that Autistic people don’t have deficits or impairments at all.

It’s part of the diagnostic criteria, yes, but that’s hardly an accurate representation of our lived experiences.

Our sensory processing isn’t impaired. Sometimes it’s heightened, sometimes it’s hard to separate out what we need to process and what’s background noise. Sometimes it’s hard to filter out. Sometimes it’s hard to spot it when we are in a flow state but none of this is impairment. There is also nothing wrong with having samefoods or being a beigeatarian (consumer of mostly beige foods). Describing these as symptoms is not ok. Being Autistic isn’t a medical condition.

We don’t have deficits in social communication. Social communication is highly cultural and what’s expected in one culture can vary wildly from the next. Autistic people have our own cultural identity when it comes to communication. It can be characterised by things like big talk as opposed to small talk. Infodumping. Empathy through action. Eyes looking wherever they are comfortable.

Uta then has an extremely inflammatory sub heading - Is autism real?

She queries whether it is because there are “no objective bio markers”. Do we need objective bio markers to be real?

I’d argue that “autism” doesn’t exist but Autistic people do. We are a highly diverse group which has several key things in common - our communication style, our ways of thinking and processing the world around us, our monotropic flow states, our sensory differences, our lived experiences as Autistic people are well documented.

After citing some extremely outdated papers, she then talks about the autism spectrum as containing a “multitude of autisms”. The Autistic community have talked about the spectrum as an expression of our own fluctuating experiences for a long time now, I wrote a post about it last week which is well worth checking out if you’re interested in exploring that.

The next subheading is The uneven rise in prevalence

In this section UF largely talks about the loosening of criteria and how that has impacted who is seen as Autistic, but her language here is very inflammatory. She seems shocked that the percentage of Autistic people with intellectual disability in Sweden has gone from 55.8% in 2001 to 6.7% in 2020.

In a moment of complete irony she cites the destigmatisation of being Autistic as being part of why there is a rise. Hilarious given the amount of stigma she herself has been bringing, especially of late. And in this very article.

The next subheading is A split in the spectrum

She fails to recognise that Autistic people are not a monolith, and many of us have intersecting diagnoses, identities, and experiences. The number of late identified people with PTSD is not a surprise to me at all - many of us have PTSD or cPTSD due to our experiences of not being supported as Autistic people. And UF’s continued focus on genetics is concerning.

She references a study where females are diagnosed later but there is no mention of the fact that the tools to identify and assess Autistic people have large gender and cultural biases. Some friends and I were discussing how poor many of the available tools are the other day. “Would I rather go to the theatre or the library” was one we talked about a lot - what’s on at the theatre? How large is it? Will I have an aisle seat? Am I going alone or with someone? How am I going to get there? Do I know this library of which you speak? So many questions!

As a former femme presenting kid I’d like to think that these days I’d be more likely to picked up. I struggled with certain clothing for its sensory input. Making friends was extremely difficult and I preferred games with little or no chat. I would go into monotropic flowstates and completely zone into what I was doing (and out of everything else), and my love of dinosaurs and gaming was strong! So much about me screamed Autistic but that would never have been considered back in the 80s, so right now we are picking up lost generations of Autistic people of all genders. We have always existed, Uta not seeing us didn’t mean we weren’t there.

Are kids like I was still going to be late identified? Or are we getting better at spotting them? Cause if we are getting better at spotting them (and I hope we are) then over time the percentage of people spotted early will continue to increase and the percentage of people identified late will decrease. There will always be people who are missed so we will always need adult assessment services. There will be parents who don’t want to asses their children, adults moving in from other parts of the world, and people who slip through unidentified for loads of other reasons. So rather than using this current situation that some people are late identified and some are early identified to “split the spectrum” I’d argue that we would be far better off focusing on creating better tools to spot all Autistic people at a young age so that they can be given the support they need when they need it, and learn about their rights as soon as possible.

We don’t sit neatly in the subgroups she believes we do. It is absolutely not that simple. We are Autistic regardless of when we were identified - we have been Autistic our whole lives. With the current closures of assessment pathways, there are so many people out there for whom assessment is a privilege rather than a right. This should never be the case. That’s what we need to worry about.

The article then goes on to look at “Drivers of changes in autism concepts”

It’s lengthy but I shall pick out a few parts which raised my eyebrows and left my mouth agape.

“I have witnessed the changes in how autism is understood, both by experts and in the popular imagination”

The popular imagination??

I query the expertise of non Autistic people who continue to study us yet don’t recognise that we are very often much more knowledgeable about our experiences than they are. And “imagination” is frankly insulting. This is adding to the stigma we face, Uta. Studies are increasingly backing up what Autistic people have been saying for decades because some researchers have realised that it’s time they listened to what we need studied and engage with us on that. We have more and more Autistic researchers researching our community who are able to provide academic credence to what we have been saying all along.

I gave someone some advice in a comment recently I want to share here. How do I know if a study is “good”?

• Is the study run by Autistic people?
• Is the language neuroaffirming?
• How big was the sample size?
• How long ago was the study?

These are just a few questions I ask when I am reading studies.

She queries whether we are over inclusive in who is considered Autistic - but you can’t just decide that you don’t like that some people are included when they don’t fit with your narrow ideas of what should and shouldn’t be included.

We are still Autistic whether she wants us to be or not.

The next sub subheading is Looping:

She then says

“It is no longer left solely to expert clinicians to define autism”

Well it never should have been in the first place. Every community has the right to define itself, not outsiders peering in like we are zoo creatures. We are taking away focus from these so called “experts” by talking about our experiences. Good. Because there is absolutely no substitute for the real thing.

“Social contagion” is the next sub subheading where she suggests that rather than being Autistic, those who recognise themselves as Autistic may have mental health problems instead. First off - it’s not an either/or situation! And secondly people don’t start identifying as Autistic on a whim after reading one or two posts or watching a couple videos. We might start to relate, we might start to wonder, but then we do a deep dive. We do more research, we question everything. I started that process when I was 39 and it involved re-examining my entire life before I started believing it was a possibility, and I’ve supported hundreds of Autistic adults who went through similar processes. I have yet to meet a late identified Autistic person who started identifying on a whim.

Under the next couple sub subheadings she calls reliance on our experiences for diagnosing as “treacherous”, and warns of pathologizing normal human variations. Which gasted my flabber because being Autistic is a normal human variation and as a community we have been trying to depathologize our experiences for decades.

Our “search for identity” is shifting the focus away from “the most impaired individuals” apparently, and I refuse to participate in a game of who has the most needs because all Autistic rights deserve to be met, and just because someone has lower support needs at one point in their lives, it does not mean that will always be the case. And UF is conflating being Autistic with other co-occurring needs which does not help at all. All those co-occurring needs should be recognised and met.

She suggests Autistic girls be given a different as yet unnamed category and I suggest people check out the post I wrote on why there’s no such thing as female autism a couple weeks ago.

She suggests that accepting that we mask would “lower the diagnostic threshold to zero” which is blatantly ridiculous and completely misunderstands masking. Suggesting that our burnout, exhaustion, meltdown, and fatigue is all caused by mental health problems instead of masking is extremely irresponsible.

She describes autism as a “popular cultural meme” which is again completely irresponsible and highly dismissive. Our lived experiences are more than a meme and I’d hardly describe us as “popular” given our treatment by wider society.

And now we have a new subheading - The tension between the social and medical models of disability

In an act of wild misunderstanding she describes the concept of neurodiversity as meaning autism can be seen as a “difference, not a disability”. And that “few would dispute that this framework fits the late-diagnosed group far better than the early-diagnosed one”

First off - I describe myself as both having a difference and being disabled. It’s not an either / or situation! And lots of early identified kids could easily be described as both as well. So yes, I dispute it. And so does the clinician who identified my child. And the clinician who identified me…

She asserts that by saying that we are not broken that we are dangerously close to claiming to have superpowers which I strongly dispute too. I do not support the superhero narrative and view it as harmful. Not needing fixed does not equate to not needing support.

UF then talks of the harm the superpower narrative does to parents and carers with “profoundly Autistic” children - yet I sometimes see them touting the superhero narrative more than Autistic advocates. And there’s no such thing as profoundly Autistic, but there is such a thing as being Autistic and having additional disabilities as well.

She laughably states that we can’t claim to subscribe to the neurodiversity movement and still claim the right to adjustments but of course we can. Our rights are there whether we claim them or not, Autism is a protected characteristic under the law and we have rights as disabled people.

Our penultimate subheading (thank the gods) is: Can comorbidities rescue the spectrum?

UF bemoans that comorbidities are not equally spread throughout the spectrum. Maybe that’s because we are human beings who don’t fit into neat boxes. Unless we start assessing all Autistic people (who wish to be assessed) for co-occuring conditions we will not get a true picture of how wide spread they are. Assumptions are made which create barriers all the time so we can’t know for sure until we stop making assumptions.

Our final subheading (yes, we made it folks, congrats if you stuck with the post for this long!) is: Towards diagnostic precision

UF declares we need to prune the spectrum so only properly Autistic people are diagnosed, i.e., the ones she is comfortable with. Not mouthy adults. She advocates for clinicians like her to be listened to, not Autistic people.

But fear not dear hearts, she wants us to get therapy that isn’t specifically tailored for Autistic lived experiences and for us to “build resilience in the face of significant social stress”

She still wants to split the spectrum into two subgroups lest anyone is misdiagnosed, and ensure that the “tragic neglect” of those with the greatest need is addressed.

I think there is tragic neglect of need for Autistic people of all presentations. As someone who supported Autistic people with all sorts of presentations across the lifespan, I see tragic neglect everywhere. It’s happening in schools, in workplaces, in homes, in the community, in hospitals, everywhere. And those people who are left without a diagnosis, a formal identification, are at tremendous risk which UF does not seem to realise.

Supporting late identified individuals does not take anything away from early identified individuals and this kind of rhetoric is extremely harmful. All of us deserve support in a timely manner regardless of whether we make UF comfortable or not.

Honestly, I am not surprised she has written this and is doubling down on her outdated nonsense. What I am disappointed about are the news outlets and publications which still continue to platform her nonsense without challenging it. Let this nonsense become irrelevant so Autistic adults and our supporters don’t have to wake up and see this ableist tripe as soon as we turn on the radio, open a paper, or log on to social media.

As I said in my post earlier today, you have innate and intrinsic worth as a human being. The world needs Autistics in all shapes, sizes, and presentations.

I want to sign off by saying that if you self identify as Autistic, I completely support that. I believe you. Self identification is valid, and I am so glad you have found yourself. I love our community and you are very welcome here.

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If only I wasn't working...

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For me this is about so much - perception of autism, narratives of autism spread by ignorant organisations, the continued vilification of autistic people as lacking empathy, and much more.

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