Is Autism too inclusive?!

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.

Uta Frith’s argument is related to other research suggesting that there could be ‘four classes of autism’, though she is arguing for two sub-groups, which would exclude manny of us here. Let’s hope that she is on her own in arguing for that. https://www.nature.com/articles/s41588-025-02224-z

I think that the linear idea of a spectrum doesn’t adequately reflect our different challenges or our strengths. The colour wheel model of autism is closer to the reality of our functioning. https://the-art-of-autism.com/wp-content/uploads/2017/11/UnderstandtheSpectrum.pdf

At the moment, most of us with low support needs aren’t getting support anyway, so It mightn’t make much of a practical difference in that respect, but it can be of huge benefit in other ways to our well being and mental health. I reject the possibility of us not having autism because we mightn’t have learning difficulties.

I take issue with Frith’s thoughts about masking and fatigue. There has been much research into this and she has discounted our experiences. https://www.twinkl.co.uk/news/experts-call-researchers-claim-autism-is-not-a-spectrum-bewilderingly-out-of-touch-and-not-from-a-place-of-lived-experience

i do think that the diagnostic process for autism should be standardised. The threshold for autistic traits is fairly standardised between the DCM5 and ICDII, but there is a variation in the diagnostic process between providers, with some people being diagnosed by telephone or online and others having face to face assessments. Autistic people deserve thorough assessments in which they can be observed while they perform tasks that are appropriate for their age group and understanding. The medical report following diagnosis should accurately reflect individual strengths and challenges that can inform those giving support.

it is unfortunate that the gutter press picked up Frith’s article and  headlines it as ‘glamorised’ and ‘desirable’. At the very least, Frith should have considered this narrative when she was interviewed by the TES and she could have chosen her words more carefully.

It's very frustrating as she's providing fuel for all the culture warriors looking for reasons to cast doubt on the authenticity of late-diagnosed autistic adults. They will of course all ignore the opinions of any autism researcher currently working who disagrees with Frith (ie the overwhelming majority of them).

The whole resilience thing is really frustrating - I'm of an age where we were taught that by systematic exposure to discomfort and challenging situations we would become more resilient to them. I didn't complain that my school uniform felt like razorblades and that focusing on not reacting to it meant that I couldn't concentrate on schoolwork,  or that the noise of the other kids felt like explosions going off, or that the smell of the canteen made me feel violently sick. I eventually just truanted and felt guilty that I couldn't cope. I tried this kind of approach again and again, developing loads of maladaptive coping strategies to get through things.

During my diagnostic assessment the psychologists concluded that the reason I wasn't spotted earlier was because I was working so hard at trying to cope with the intense discomfort and difficulty I felt in everyday life. I did everything that the doubters wanted and it didn't work.

It's so wearing hearing these kinds of arguments now being made.

Cinnabar_wing said:

Basically she wants to go back to autism is only diagnosed between 3-5, mostly males, and the rest are basically making it up. 

I can't agree that that's what she said. The relevant part of the article was 

"Now, I think the people in the second group [those diagnosed much later than 5 years old] 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."

To me, she is saying that what's now labeled ASD embraces too wide a range of conditions, with too wide a range of support needs to be under the same umbrella. She's looking at it from the viewpoint of child educators, where the expertise needed for children with profound support needs will be vastly different to those with minimal needs. 

I'm sure I'm not alone amongst the members here in not having received any special support at school. Thinking back, I suspect any benefits I may have gained by getting such support would have been minimal, if any. But the peer pressures for being singled out could have been very damaging. Kids can be vicious creatures - they're all too often bad enough when one of their peers puts in the effort to do well in class. They would be unbearable for the classmate who is identified as needing extra help in class.

Without any such assistance throughout school, I learnt how to fend for myself, how to quietly put in the extra effort to keep up with my more able peers, how to visibly succeed. Had I been told then what I now know, I may have risked giving up because I had an excuse. I probably wouldn't be the fighter that I am today.

So I actually agree with Uta Frith - the autism spectrum is trying to embrace too much. Fixed labels can detract from where the most help is needed and limit progress where it isn't.

That infuriating woman keeps making me think of the analogy that we are finding more stars since man created better telescopes. 

Thanks for that link. I have huge sympathy for teachers who are dealing with children with special needs (not just autism), my sister worked full-time as one until 2021, and now does private tuition. But, like much in the education system, the solution is proper funding of the school system. Instead we've had endless tinkering with curriculums, more responsibility loaded onto teachers without any extra time or money, and school inspections that seem to have very little to do with children and a lot to do with justifying closing school or forcing them into for-profit academies. This sounds like more of the same — 'solving' the 'problem' of autism by having fewer kids (and adults) get a diagnosis. I have to wonder if Dame Uta Frith has actually met any autistic children and their families, and if she'd be willing to repeat her viewpoint to their faces.

Thank you for explaining that. My son was only diagnosed at 12. We sensed something different between 3 & 5, but school dismissed it when we later suspected autism. I can't imagine how things would have panned out for him without Autism and ADHD diagnosis. 

I hope she is ignored.

Yeah, it does feel like she's shitting on everyone here basically.

As she was at the forefront of the old research, creating the sally-anne test, which was just recently shown as being problematic, and she mentored people like Baron-Cohen who said it was extreme male-ness (and not that they only looked for it in boys). She wants to hold back autism research and sit at the top of it like an old dragon.

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.

Its already hard enough as it is without a 'so called' top academic putting her size 9's in it. 

There is so much evidence as to why it's gone up (mainly, if you only started diagnosing it relatively recent history, and it's life long, you are going to have missed lots). But people want to look for an easy answer, and if back in the day there were less people being diagnosed, lets just go back to that. It's incredibly problematic.

It's the same thinking we see so often, if something is getting difficult, let's go back in time and pretend knowledge and understanding hasn't increased. I am all up for studies, and greater knowledge, but just having an opinion without any science to back it up is damaging as far as I can see.

She basically says unless you were identified very young, your just a bit sensitive in her book, and just have to work on your anxiety and resilence. Toughen up basically. She says that about kids from late primary up. 

Thanks Cinnabar_wing My intention was not to cause alarm. I just didn't have anyone who I could talk to about it who would actually understand. Thank you for confirming. 

Cinnabar_wing said:

Basically she wants to go back to autism is only diagnosed between 3-5, mostly males, and the rest are basically making it up.

Awful  

https://www.tes.com/magazine/teaching-learning/general/uta-frith-interview-autism-not-spectrum
(Found one that isn't paid.)

Basically she wants to go back to autism is only diagnosed between 3-5, mostly males, and the rest are basically making it up. 

"It’s understandable, because they listen to the lived experiences of people who say they’ve been masking, that they spend their time imitating what neurotypical people do, and they’re exhausted every day because of this. So, the harm is not the masking, but the exhaustion afterwards. I can’t quite understand that, because exhaustion could arise from lots of other causes.

I expect we could say we are all masking, all the time, trying to adapt to our society’s norms. So, from this point of view, I’m very critical of this idea."

She says there are too many later diagnosed people, so the answer for her is it's not real, and we should go back in time to when it was easier for them to understand.