Uta Frith: why I no longer think autism is a spectrum

Mij

Mij

Senior Member (Voting Rights)
Mij said:
Uta Frith, is emeritus professor in cognitive development at the Institute of Cognitive Neuroscience at University College London (UCL), and the person who pioneered much of the research that underpins our current understanding of autism.

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
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This is bullshit. It's apparantly too expensive to help people with level 1 autism so we just get thrown under the bus. They trot out an 'expert' like this to say we're just people who struggle with life and want a diagnosis to make us feel better about it. Doesn't that sound familiar?

I wasn't diagnosed as a child and my life was an endless struggle to understand why I couldn't just be like everyone else. I am close to 2 people who are very obviously autistic, more than I am, and cannot get diagnoses. It's not just about feeling anxious, and most people are not 'masking' in the way we do.

My pre severe life was incredibly hard because I got no support and was expected to grow out of my neurodivergence and become normal, and somehow find my way in a world where job interviews are literally designed to weed people like me out. People I know have struggled terribly. The idea that only severe autism is real or important is just absolutely enraging. People peddling this shit should be ashamed. Anxious young women my arse.

She's actually trying to pedal the idea that people who have what would have been called aspergers get diagnosed young. So if you were missed, you're 'hypersensitive'. Also she seems to have no real understanding of what pw 'aspegers' are like.

I understand that perhaps level 1 and level 4 autism are not the same disease. Thats entirely possible. But that doesn't mean we don't need support. My blood boiled reading this.
 
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V.R.T. said:
I understand that perhaps level 1 and level 4 autism are not the same disease. Thats entirely possible. But that doesn't mean we don't need support. My blood boiled reading this.
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While the scale may be different in a number of dimensions, it seems to me that there are potentially a few parallels here with some of the MCAS/POTS/hEDS discussions happening elsewhere on this forum: a desire on the part of the establishment to (re-)establish strict, limited boundaries for (or to entirely discard) labels that have been broadly applied in such a way that, although there is a bit of unconvincing lip-service paid to the idea that "we recognize that those now excluded have real problems," ultimately has the effect of cutting off those excluded from aid, recognition, identity, and hope (because without a label no one will bother with research or assistance of any kind).
 
I don't think Frith was saying that people shouldn't get support (even though that might be the result). I think she was saying that there are people with different conditions being included in the label 'autistic' and it may not be helpful.

We do not have a biomarker, and I suspect that when we get a biomarker, we need more than one. There will be different kinds of autism - very many different kinds.

What does all of this mean for how teachers support pupils with autism in the classroom?

I think it’s useful to make clear distinctions between the different types of children who have been diagnosed as autistic.

Those who are intellectually impaired and are diagnosed early cannot very easily be accommodated in mainstream. They tend to have very challenging behaviour.

Then, there are children who have been diagnosed as autistic but who have good language, and might once have fitted into the Asperger syndrome category. They can often really benefit from mainstream education, but you have to be concrete in telling them what you want them to do, and you can’t assume they understand norms of behaviour, as other children do.

Finally, we have the extended spectrum. This will mainly be older children or children in later primary. We don’t currently have a separate label, but it might make sense to treat them as “hypersensitive”.

I’m not sure whether this group is easier to teach or not. If they are incredibly anxious, they might be the ones who won’t come to school any more. That’s a big problem. Schools will need to find ways to build trust with these pupils. Work on building resilience might help them - something that is less likely to work with the neurodevelopmental group.
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She mentions that high functioning people are reporting that they spend all day 'masking' and this makes them very exhausted, she questions that. It seems to me possible that people with acquired symptoms that include exhaustion and hypersensitivity might have something like ME/CFS.

I don't know much about this, but what I have seen about the genetics of autism had previously led me to the belief that there are a number of different types of autism, each with different genetic causes. I can see the value in distinguishing between people who are non-verbal and profoundly intellectually disabled, and people who are not, in terms of providing care.

I'm certainly not meaning to ignore or downplay the difficulties you have had V.R.T or to suggest anything about your diagnoses. I just think that there could be something worth thinking about when this woman, who seems to have spent a lot of time with people with various types of autism and a lot of time thinking about the issues, suggests that people, including herself, may have gone too far in making the label of autism very wide.
 
From a completely ignorant view. My impression as well is that autism refers to a very wide variety of things. If the label helps in getting proper accommodations thats a good thing, and I can definitely understand in that sense being sceptical of anything that moves away from it. But I can see the argument that to make biomedical progress researchers may need to move past this label (maybe similarly to like Post-COVID, where research is being hindered by including loads of different things under one label and studying it like it’s one condition).
 
DHagen said:
it seems to me that there are potentially a few parallels here with some of the MCAS/POTS/hEDS discussions happening elsewhere on this forum
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I think this is a bit different. I have met Uta Frith and I think she may be a bit of a self-appointed oracle on autism but much of what she has said is well founded in very extensive experience. I think she is concerned about how wide a useful category can be taken before it ceases to be useful or actually impedes things like teaching in schools. My daughter is a schoolteacher and mostly each child is treated on their individual merits but I suspect that bureaucracy has forced teachers to categorise in a way that may be self-defeating.

The MCAS/POTS/EDS problem is superficially similar at least for EDS, where it is an issue of how wide a category is stretched (although for EDS the limit is clear cut and the widening is not justified). But there is a difference in that these categories are largely meaningless pseudo-explanations for problems that could be otherwise diagnosed as ME/CFS, or whatever, in a meaningful way. If someone has serious GI intolerances then that can be diagnosed as such without giving a label of MCAS. The MCAS label serves as a money-spinner for the physician and as a way of making it even more certain that when the patient comes into contact with other health professionals nothing they say is believed, or even as a nice piece of evidence social services can use to help get a safeguarding order in place and separate a family. It seems to me a lose-lose situation.
 
Frith says "I think it’s useful to make clear distinctions between the different types of children who have been diagnosed as autistic", but when I think of the autistic children I know in real life, many of them don't fit into any of her 'clear' categories. There are those who are intellectually able but cannot cope in busy social environments - mainstream education is set up to cause them one problem after another, and it certainly isn't just a matter of 'telling them what you want them to do' as Frith suggests! Then there are those who are wholly or mostly nonverbal but intelligent (and whose lives are blighted by people assuming that lack of speech means intellectual impairment). Having 'good language' isn't the discriminating factor that she seems to want it to be.


She mentions that high functioning people are reporting that they spend all day 'masking' and this makes them very exhausted, she questions that. It seems to me possible that people with acquired symptoms that include exhaustion and hypersensitivity might have something like ME/CFS.
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In my experience as a 'high functioning' autistic person who has now become low-functioning thanks to ME/CFS, the two are not alike at all.
 
Jonathan Edwards said:
I think this is a bit different. I have met Uta Frith and I think she may be a bit of a self-appointed oracle on autism but much of what she has said is well founded in very extensive experience. I think she is concerned about how wide a useful category can be taken before it ceases to be useful or actually impedes things like teaching in schools. My daughter is a schoolteacher and mostly each child is treated on their individual merits but I suspect that bureaucracy has forced teachers to categorise in a way that may be self-defeating.

The MCAS/POTS/EDS problem is superficially similar at least for EDS, where it is an issue of how wide a category is stretched (although for EDS the limit is clear cut and the widening is not justified). But there is a difference in that these categories are largely meaningless pseudo-explanations for problems that could be otherwise diagnosed as ME/CFS, or whatever, in a meaningful way. If someone has serious GI intolerances then that can be diagnosed as such without giving a label of MCAS. The MCAS label serves as a money-spinner for the physician and as a way of making it even more certain that when the patient comes into contact with other health professionals nothing they say is believed, or even as a nice piece of evidence social services can use to help get a safeguarding order in place and separate a family. It seems to me a lose-lose situation.
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I actually agree with much of this, certainly in principle, but I think there is a key issue on precisely this point:

Jonathan Edwards said:
there is a difference in that these categories are largely meaningless pseudo-explanations for problems that could be otherwise diagnosed as ME/CFS, or whatever, in a meaningful way.
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I don't think that this happens very often - it is hard enough for those who are in obvious conformity with CCC criteria (or similar) to get diagnosed, those with at least outwardly atypical presentations struggle still more, and those with a previous diagnosis along the lines here discussed are often seen as not worth bothering with (as you note).

This is where I was trying to draw a parallel - the diagnosis being applied may well be both inaccurate and actively damaging to those receiving it, but the immediate effect of removing it can be extremely damaging to the individual as well, resulting in injury that, if it is not speedily replaced with a more productive label, can be both severe and permanent.

[edit for clarity and to eliminate repetition]
 
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Mij said:
@Eleanor

Could you elaborate on the differences?
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Yes, I'll need a bit of time to put it into words but I'll come back to this.

The simplest way I can put it is that as a healthy autistic person I was energised by the things I enjoyed doing, physically or mentally, whereas with this illness any expenditure of energy knocks me out, whether it's something enjoyable or something unpleasant. I feel as ill after trying to read a page of a favourite book as I do after trying to complete a page of a DWP form.

More specifically, before I got ill I could concentrate enjoyably on going deeper and deeper into a work project for ten hours and just feel healthy tiredness at the end of that day, whereas now I find it hard to keep focused on a single activity for more than a minute (eg making a cup of tea). That singularity of focus is central to autism for me - I think the 'monotropism' theory has a lot going for it https://www.bps.org.uk/psychologist/me-and-monotropism-unified-theory-autism - and the way this illness interferes with that ability and replaces it with Etch-a-Sketch brain function is one of the things I have found hardest to deal with.

On the hypersensitivity point, it's important, but I also see a tendency emerging (not just on S4ME) to assume autism means finding all sensory experiences uncomfortable and trying to avoid them. In my experience and that of lots of other autistic people, we’re just as likely to seek out and repeatedly revel in particular sensory experiences (could be music, rhythm, colour, texture, certain kinds of touch or movement) and those things can even become special interests that we organise our lives around. Whereas with ME/CFS enjoyable sensory experiences have to be rationed or denied to us by the same functional limitations as everything else.

Sorry if that's a bit rambly :laughing:
 
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DHagen said:
but the immediate effect of removing it can be extremely damaging to the individual
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I always wonder about this. It may depend a lot on cultural and financial contexts. But I sense that people put far too much store in diagnostic labels. They matter for financial benefits but otherwise I am doubtful.

I may be unusual being a medic, brought up as a child in a medical household. But as people will know, I tend to ignore other medics (as did my father) and mostly I think I judge people on social instinct.

If someone I met socially who seemed fairly fit and well on the surface said to me "I have these really big problems with gut pain and see a specialist but nobody can make a diagnosis", I would likely be very sympathetic. Doctors not being able to diagnose is common enough.

If, on the other hand the same person seeming fairly fit and well said to me "I have mast cell activation syndrome", I would tend to think "OK, is that supposed to be a big deal?" (Thinks: you look pretty well on it.)

I suspect that a lot of people who end up with a diagnosis of MCAS have seen a string of doctors who have said, honestly "Sorry, we cannot find anything specific wrong, which is at least good news in one way; you may do best to cut out the foods you have trouble with and maybe try some simple analgesics". That to me is what a doctor should do; there is no justification for inventing something to cover ignorance.
 
My mother-in-law has siblings with a variety of chronic illnesses, whom she loves, but when she talks about their situations there's a faint disparaging tone, an implication that they brought it on themselves with poor lifestyle choices. She's frustrated when they can't make it to family events due to sickness. An old friend of mine has a 'deadbeat' step-dad who the whole family is quite angry at for not working due to some unexplained fatiguing illness. Many people absorb and perpetuate anecdotes like this constantly.

Spend too long hearing these stories, and the idea of explaining the symptoms of your own illness, disability or neurodivergence feels like opening up for judgement. It feels (and probably is) safer to have a label, including one, like autism, which now at least has a campaign attached to it reminding people they are supposed to resist their natural inclination to be judgemental.

Personally, I do tend to describe my symptoms this way:
Jonathan Edwards said:
I have these really big problems with gut pain and see a specialist but nobody can make a diagnosis
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But I think that's a reflection of how people closest to me treat me and talk about illness. I am generally believed and my symptoms taken seriously.

If the rest of society were as non-blaming and sincerely supportive about illness as people are on here, I think we'd see less emphasis on labels.
 
Hutan said:
She mentions that high functioning people are reporting that they spend all day 'masking' and this makes them very exhausted, she questions that.
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She wants to try it for an hour. It's indescribably tiring even when you haven't got another illness. It's the reason I've lived alone since the age of 16; I can't cope with "performing" all day and then having to come home and do it again. Anyone who's done teaching for the first time knows how exhausting it is, and masking is directly comparable. And the children don't go home at half past three.

One thing people never understand is that when you've masked since childhood to fit in with others' expectations, you no longer know how to stop. The only way to switch it off completely is to be alone. The thought of having to live in the same household as other people gives me panic attacks.
 
I noticed this blog post responding to Frith and had to smile at the following:
The extra irony here is that most of the science would not pass as rigorous in any other field. As Andrew Whitehouse, Professor of Autism Research at the University of Western Australia, told Spectrum Magazine in 2021, “We accept, and perhaps even expect, lower standards of clinical evidence in the autism field, than in almost any other.” He followed up on my podcast, pointing out, “There are zero other, no other areas of health and medicine that would accept the low standards that we accept in the area of autism.”
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There might be one other...
 
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