Is Autism too inclusive?!

Thank you for sharing the article. It was interesting to read. I'm curious, how would Frith categorise people who fit the description of autism, but do not have intellectual disability. 

As a multiple times misdiagnosed,  mistreated, with history of abuse, I'm definitely a vulnerable person. I was diagnosed tourette, depression,  there was suspicion of epilepsy,  finally now there is suspicion of autism. I didn't diagnose myself with any of those before and I'm reluctant about "diagnosing myself" as autistic. I would like that the psychiatric society finally starts recognising conditions properly,  supporting patients properly,  if my condition is not autism, then I would like to know what else. It's not something that im so attached to this particular term. But clearly I'm just an experimental rabbit for them and not only me. So now, when there is more knowledge, more recognition and tools to support, some voices say: just try harder and stop making excuses. For me masking was never an issue because I can't mask well and I don't really care about it. But everyday life causes me a lot of stress and overwhelm, to the point that I cry without reason (reason is a change in procedure at work for example) but that lady says "just try harder, stop making excuses" because I was not recognised as a child. If I was a child now, then probably I would be diagnosed at age 3-5.

This is excellent, thanks for sharing.

I was thinking that perhaps if they'd renamed the Asperger's diagnosis in 2013 rather than folding it into an expanded ASD then it might answer this problem, but I think that's naive. I suspect the culture warriors would be arguing that Asperger's (or whatever replaced it) was too inclusive and was just an excuse for not trying hard enough to fit in/ pathologising difference

Andrew Hugill (another late diagnosed autist) has a readable rebuttal of Frith's article on his Autistic Professor blog: https://www.autisticprofessor.uk/2026/03/the-autism-spectrum-has-not-collapsed.html

Cinnabar_wing said:

she said she was skeptical of letting kids wear ear defenders in class -she said they might claim they help but there is not scientific evidence to prove it's true. I mean, I don't know what to say to that.

I'd ask her why, as a respected professional, she doesn't carry out observational research, which can be done using standard scientific methods.

Lotus said:

it seems to me that Uta Frith doesn't understand how autistic anxiety really affects people, because she's never experienced it herself - the old "double empathy" problem.

I think you've hit upon the biggest issue. Here is a supposed autistic expert, who seems to be skeptical of what autistic people are saying. I mean she said she was skeptical of letting kids wear ear defenders in class -she said they might claim they help but there is not scientific evidence to prove it's true. I mean, I don't know what to say to that.

If the expert show no empathy, where do we go from there?

Before I learned about autism, I thought that I felt different because I was a bit sensitive and creative. Learning what autism was still didn't give me the whole picture, as I had always held the belief that everyone is different. That is true, but reading a book called "A field guide to earthlings" gave me an insight into how neurotypical people filter out unnecessary stimuli, and their patterns of thought and behaviour such as social constructs, indirect communication, social cues, and small talk. I then realised that I wasn't "typical", and I identified more with people in this community.

In the same way that I didn't realise how my brain was working differently in some ways to the majority of people, it seems to me that Uta Frith doesn't understand how autistic anxiety really affects people, because she's never experienced it herself - the old "double empathy" problem.

I agree that some autistic children with high support needs benefit from special schools, while others will be fine in mainstream education. But due to the issue of funding support in mainstream and possibly alienating children due to a label, I feel it might be better to give more training to teachers and teaching assistants in identifying individual needs and supporting them in the classroom, without having EHCPs. Every child is different, autistic or not, and every child who needs support deserves to have it.

Martin said:

Reliance on self-reported traits, difficulties and life experience is much more useful for the diagnosis of adult autistic people. 

That may be, but face to face assessments rely on self-reported traits, difficulties and life experience too, at least mine did. I didn’t mean to exclude the importance of the diagnostic interview which includes self-reported traits.  I also reject the idea that autism can be detected by observation alone in adults with no learning difficulties.

The gutter press reports that anyone can just ring up and ask for a (positive) diagnosis. My concern is that it would be easy to fake autistic traits during a telephone interview should such a person decide to undertake a piece of investigative journalism. 

Maybe  it feels like it’s getting harder to be assessed or what they assess might be put under more scrutiny. If people want an answer they can find out quickly. Is not as if people are jumping to proclaim their autism nd although this does seem to be a thing when linked to sexuality or identity. Personally I like to talk about it on its own, someone asked if I had dyspraxia or dyslexia and it turns out I tested positive  15 years ago and I do. I just never took a real interest. Linking autism to other conditions doesn’t really interest me, to me this is self interest. And a kind of technicality. Autism is the big fish, learning that was like learning who my people are.

is autism too inclusive? Well we are a highly excluded group, it would make sense to maybe add more diagnosed members(?)

Having read the rebuttal what this looks like to me is a leading researcher trying to make a breakthrough discovery everyone remembers her for. It seems highly impractical just to focus on an opinion, and ignore that the theory has been largely debunked. This is a key observation about the time we live in now and how people think about the condition because she doesn’t appear to separate herself much from the offence her ideas may cause people. Part of me feels yes this may be in small part true, but that would mean many thousands of people are misdiagnosed (and just a bit wet around the ears), and what happens to people who are not diagnosed you but do have autism? It assumes that the clinical process that’s been in place is airtight which we already know it’s not. For level 1 people who believe in the spectrum not traits this is really insulting. 

I had this same thought the other eve. I joined a group which was nice but in the back of my mind was this doubt about whether so much of all this is NTs using this as a way to control sections of society. Everyone is talking about their fidget toys, I am thinking NTs are making a mint running fidget toy companies. I don’t like how the whole thing is being orchestrated in a way to silence us more.

Self reporting after all is how most people reach the fist stage of referral. I wonder if most of what is heard is a belief that they are/feel different, or what they think are medical conditions which relate to autism experiences.

We are also the ones with the most experience and able to voice that. The worst thing is being young, misunderstood, autistic and not heard. We owe those people a voice. 

All these people gate keeping access to non-existent support - there is no gravy train of support for the majority of late diagnosed autistics, certainly nothing that is at all costly for the state - strikes me as rather pointless.

I rather reject that autism in adults who have no intellectual disability and have masked heavily, perhaps for decades, can be detected by observation (by anyone of any degree of training or experience). Reliance on self-reported traits, difficulties and life experience is much more useful for the diagnosis of adult autistic people. 

I read the article and found some of Frith's comments disappointing and potentially damaging, much as I fully appreciate that science is still learning about autism. I am also grateful that the lifelong challenges I have faced were eventually diagnosed at age 59. We are a lost generation whose challenges were missed in childhood, after all, and we bore the cost of that in trauma and being misunderstood. 

I think it's caused by fear from NT's that they might not be so typical afterall. 

It makes not sense to me that us latelings should be excluded because the condition we have wasn't identified until recently, well within many of our life times. 

I wonder where these late diagnosis deniers think Autism comes from? As it seems to run in families a genetic cause would seem sensible, although no one gene has been found "responsible", but a variety of them. Unless someone wishes to follow the Kenedy route and believe its all caused by vaccinations or some other ill of modern life, I dont' see how you can deny adults with autism. Even if you believe in the much discredited vaccine cause, many of us alive today with and without autism will have been vaccinated, children have been being vaccinated sinse before I was born and I'm 64! What about those who were diagnosed early on in life who are now adults, does thier autism disapear on thier 18th birthday?

I do think there are more variants of autism are commonly believed, there seems to be quite a split between how autism manifests in many women as opposed to how it manifests in many men, but there are cross overs. I think much of the gender or allegded gender differences are social constructs anyway as is gender. I know gender as a social construct is difficult to how many people think about gender, but it is quite distinct from sex and sexual orrientation. 

The more of us who are diagnosed the less we can be othered and the more we become part of the normal variations of humanity. I'd hesitate to suggest that someone goes for diagnosis as a political act, but it's fast becoming one.

You could ask what is the downside of it being too inclusive? There is no automatic entitlement to anything.

It might be better for them to state the problem they are trying to solve first.

At worst it creates too big a pool of people and it is hard to apportion support. But then what you need is sub-divisions, except people wanted a big bucket to avoid dividing people.

I think it is about the level to which your life has been adversely affected that is the key point. Since this is one of the key criteria, there shouldn't be an issue, but perhaps this has been over interpreted. There is no data to judge.

There is a valid question about whether diagnosis helps or hinders. This depends on the individual and whether it is viewed as an excuse not to do things, or information to help find work arounds to achieve things (without burnout and confusion).

It was interesting article, I would say I partially agree and also disagree. Whatever it is, I'm kinda tired and scared of all this huge and quite argumentative debate. From thinking that im the only alien in this huge world, around two years ago I came to the realisation,  that im not the only one. And then it turned out, that there are a lot of people like me and that this diagnosis is a popular diagnosis and overdiagnosed etc. I don't know where the truth lays, I can only say, I'm here because I found here my place and like minded people. But when I see, what is going on around im reluctant about going for diagnosis myself. The therapy gave me a lot of understanding of myself and also helped me find words to describe what I feel and what are my problems. My school years passed already, I grew up unsupported and even if I get a diagnosis of autism now, it wouldn't have changed all trauma that I went through because of being misunderstood,  bullied etc. 

I don't insist on getting the autism diagnosis,  but on getting the right diagnosis after being multiple times misdiagnosed and mistreated in my life. I don't know if that lady has any idea of it. There are always people,  who get long years of misdiagnosis,  wrong treatment,  because the doctors themselves don't really know, how to treat them. From my experience I can say, depression is the easiest and fastest diagnosis,  does not need any long observations,  so even patients,  that don't meet the criteria of depression,  get this diagnosis at the beginning.  Just to label the patient at the beginning,  and then "we will see".

Cinnabar_wing said:

I mean, I am okay if they want to make changes with research, but articles like this don't help people, they create division and animosity to a group struggling as it as, simply because she sees us as inconvenient

That’s what I feel too.