My brain chewing thoughts

It's been quite a long time, that I've been chewing this topic in my brain but wasn't sure, how to put it to words. The topic in question is the discussion about autism itself and quite recent statement from Uta Frith, that the spectrum has collapsed. I would like to share here my observation and analysis. I'm also curious of any other thoughts and points of view, that might have not come to my mind. Just shortly- I'm not diagnosed,  suspected autism (according to ICD-10 Asperger Syndrome, still diagnosed in Germany) I'm awaiting my assessment autumn this year. I expect to receive my answer and "ticket" for getting support that I need. If I'm not autistic,  I want to know, what instead. And there is the dilemma, what should I do with my account here if I'm not autistic. 

But going straight to the point. As Uta Frith said, "the spectrum collapsed" I would say different- it has not collapsed. There is quite big mess in a discussion in media and social media about autism. As a result, there is a confusion and one may ask themselves "what is this autism actually?". The discussion and often "education " provided by activists or YouTube personalities lacks structure. And you can find quite many opposite statements. Example: one says "why everyone pathologises autism, it's just a different way of perceiving world, not a disorder or disability, its a superpower". Other one says: "I'm done with it, autism is being romanticised, it's not just a quirk, it's a disorder and disability". There is also quite much hatred. Often caregivers of severely autistic people criticise mildly autistic people, because they belong to the same spectrum, but their needs are much lower.  

What I think, should be emphasised and clearly stated by everyone taking part in the discussion and education- autism is a spectrum. Spectrum of traits and levels of disability. There are people who need very substantial support, who are obviously and visibly disabled and noone should talk about their condition being "just a quirk" or just a difference. There are people, who can function a bit better, but still need substantial support. And there are people, who seem to function well. Until they have to deal with the big world on their own. And then it turns out, they can't manage it on their own, or they are much more vulnerable than an average person and should be supported while functioning in this big world. Hatred will not help anyone, but destroy the spectrum as it is. For me personally,  I'm not glued to the label "autism", should tge spectrum be splitted,  then be it, but wisely, to not leave anyone without support. There are quite many people,  whose needs change over time. Should they be then rediagnose with other conditions? The spectrum of traits and needs serves them much better. I also have impression, that Uta Frith is only upset about people being misdiagnosed with autism. Yes, misdiagnosis happens. Across all conditions. Is she also upset about people,  or autistic people being misdiagnosed with other conditions? Just a rhetoric question. I was misdiagnosed with tourette and forced on awful meds. Later was confirmed by a team of neurologists that it was not tourette,  but nobody bothered to have me further tested.

The spectrum of needs functions not only in autism. Tgere ate people with down syndrome,  who are also mildly to severely disabled. Does anyone get upset about it? Do people with down syndrome hear "you don't look..."? As I found out, autism may also appear in specific facial features, but they are much less visible than features of people with down syndrome and absolutely not all people on the spectrum have these facial features. 

I hope I will stop hearing, that I "just have trauma" or "just depression" but be taken seriously instead, whatever condition it is. I hope this post will not cause a big argument here.

  • Interesting article. The article says:

    Prof Ginny Russell, at the University of Exeter, said: “I do think it’s going to continue until maybe everyone is categorised as neurodiverse.”

    "Everyone is neuro-divergent", she means? But not "everyone is neuro-diverse", or am I misreading maybe.

    All brains have peculiarities (neuro-diversity) but neuro-divergence is a significance distance from the norm, which is different.

    And in particular for autism the neuro-divergence involves a disability that affects them throughout life. It does not belong to everyone with some traits (repeating Alien0n3arth somewhat).

    • However, I do fear her prediction is correct as "everyone will be categorised as neuro-divergent."

    Also, her paper "Autism Diagnosis as a Social Process" has an interesting abstract and being a researcher she likely knows a lot, I guess I may read it.

  • I understand. The diagnosis itself is not being issued just because of autistic traits,  but also how these traits affect someone. It's all not so obvious and clear, many people may not be even aware of being affected negatively, having disadvantages etc. Putting one's experience into words may also be difficult. Till my realisation I used to say that im simply inferior to others and there seemed to be no help for me to become like others. I couldn't find and name the reason. I just feel it. Inferior and not fully grown up. 

  • Slightly tangential but here are some studies I found pretty interesting (some take a little time to check, some take longer, please feel free to thoroughly ignore them):

    1.  WHO-2025 Mental Health Fig. 2.4 on eating disorders, and Section 2.1.2 for children, and figure 2.9 for different continents were all quite interesting.
    2. Depression (World In Data) with UK 2nd worldwide below Syria apparently (from this other map).
    3. Autism (World In Data) Au's relative rise (2023 compared to 1990) is much higher than depression actually.
      1. So this is a correction to my previous statement; but possibly comparable to other conditions anyways, or to depression with wider (unavailable) range? Still to inspect.
    4. WHO article (Info 2021, but updated on 2025) with a nice Overview which I share below (last sentence is a bit weak though):

    Autism spectrum disorders (ASD) are a diverse group of conditions. They are characterized by some degree of difficulty with social interaction and communication. Other characteristics are atypical patterns of activities and behaviours, such as difficulty with transition from one activity to another, a focus on details and unusual reactions to sensations.

    The abilities and needs of autistic people vary and can evolve over time. While some people with autism can live independently, others have severe disabilities and require life-long care and support. Autism often has an impact on education and employment opportunities. In addition, the demands on families providing care and support can be significant. Societal attitudes and the level of support provided by local and national authorities are important factors determining the quality of life of people with autism.

    Characteristics of autism may be detected in early childhood, but autism is often not diagnosed until much later.

    People with autism often have co-occurring conditions, including epilepsy, depression, anxiety and attention deficit hyperactivity disorder. The level of intellectual functioning among autistic people varies widely, extending from profound impairment to superior levels.

    5. Chart on increase over time for many mental health conditions (not autism) Mental Health all charts (World In Data) 

    I just wanted to see more analysis across conditions but the papers focus on 1 at a time. WHO is broader in that sense.

  • I understand that, but people like this which I will quote from are speaking out-

    "“It may soon encompass people like me, for example. I have not changed but having some borderline autistic traits, I may soon be absorbed by autism – because it is itself changing.”

    www.theguardian.com/.../uk-increase-autism-diagnoses-neurodiversity

  • It can seem at times that autism is getting to be just a different brain type whether you have issues or not

    Just different type is not clear enough. Extrovert is just different to introvert. Both are normal. I have misunderstandings on daily basis, im more vulnerable to any sort of bullying and abuse, which happens till this very day. So for me it's not just me being different. It's my inability to understand,  that someone was rude to me or arrogant (someone has to tell me) or that I said or done something inappropriate. I'm fine with getting constructive criticism, I don't get offended. I often feel guilty for saying something inappropriate. I also have misunderstandings in non-verbal communication. I can explain something technical very well, but fail when it comes to simple human interaction. This is an example of difficulties although I don't have any intellectual disability. So it's not just a different type for me, or quirk. I'm more vulnerable and need support group, therapies etc. Otherwise I can and I do eagerly do home chores, I can cook and I take care of my family members. But I need additional explanations for simple interaction. Otherwise I have no idea, if it was a joke or serious or the person was angry or tired or none of that.

  • I am waiting on the report by the UK government by Wes Streeting to see why autism and adhd has risen in the manner that they have been reported to. Are online tests and particularly private online tests a new thing for autism that happened during covid that led to any of this increase in numbers. 

    www.gov.uk/.../review-launched-into-mental-health-autism-and-adhd-services

    It can seem at times that autism is getting to be just a different brain type whether you have issues or not. That is probably not the case but it can increasingly seem that way. Also, with online social media influencers it seems like a lot of NT people have taken up hobbies for monetising which looked more special interests before. Sensory gadgets are being sold for NT people as well. It seems like some blurring is going on.

    I think that the new diagnosis is good to include sensory as it noted by Kanner himself, but wasn't in the DSM 4. Behavioural aspects was that could lead to it. I think that the aspergers/autism merge can be confusing to some, but people with higher needs should be able obtain the support they need.

  • Psychotherapy created a huge word-salad. Trauma is the main buzzword, today, with so many people, in the public realm, harking on about their 'Dysfunctional Family'. Usually the types who demonise Men.

    Someone's making a quick buck out of all this. And it isn't healthy.

  • So do I, but they're only of any use when watching quiz shows or playing something like trivial pursuit

  • Yes. I hope things get better and you can access the support you deserve, and have a daily life that is less exhausting and more enjoyable.

  • I also think, and have a gut feeling, that there will be reclassification. I don't mind being labeled with something else,  most important thing is that my difficulties would be addressed correctly and that I would have access to support I need.

    The rise of diagnoses is due to awareness, but also the fact that suddenly people from various generations seek the assessment all at once and tge system is not prepared for that. It's absolutely possible,  that someone with core traits of autism - repetitive behaviours and intrest,  social difficulties, sensory differences goes through life undiagnosed,  even if it's a pretty obvious case. Why this happens? Because the person gets examined by professionals who are not trained in recognising autism. So if they are well experienced with trauma and depression,  they will diagnose these conditions and not look further, what caused them. There are alot of undiagnosed autistic people, who got misdiagnosed for decades. I had impression,  many times, that im just a problem for doctors and they had no idea what to do with me.

  • Yes I also don't like the "super power" narrative.  In fact I do have some a bit unusual abilities,  they are mostly useless. Saying that autism is a superpower harms those who are most affected, and it may attract some bad actors with high narcissistic traits (wanting to be tge supermen with superpowers) and may aldo fule such social media trends where people (usually young people) make fun out of autism and other neurodivergent conditions. 

  • I just read a bit of the article, the bit I could read before I had to subscribe to continue.

    Different types or suggested types of autism and particularly how autism presents in women are discussed quite extensively by Gina Rippon in her book "The Lost GIrls of Autism", if what she suggests the evidence shows then none of us have anything to worry about, as it's about how presentation tends to vary in women and girls and some men of course than the extreme male brain hypothesis that Simon Baron Cohen supported for so many years. 

  • I've not seen this Uta Frith person, but I do understand that people like her are causing problems as of course are those with oposing views to hers. I do think there's a problem but I'm not sure where it lies, I think it should be obvious to all by now that autism has been around for years but not acknowleged, people were classed as a bit odd, not academic or loners or all three, now these people have a name, a label and that puts them in the sights of those who think people "can snap out of it" or pull thier socks up" or whatever unhelpful phrase you want to use.

    I do hate it when people refer to autism as a superpower, I think part of this is due to the portrayal of autisic people as nerdy genius's on tv, they do exist, but only in a tiny minority, just as a minority are more profoundly disabled, the rest of us are stuck bobbing along in the middle trying to get on with life as best we can. Most of us don't need full time help, carer's or whatever, we might just need more help for certain things and find ourselves limited in what can do without succuming to panic attacks and burnout. 

    I've noticed an increasing narrative about the need to sociable and how much we need other humans for activities, company and for our "mental health", (another phrase thats becoming over used). But what about those of us for whom hell is other people? One of the things that most strikes me reading threads here, are the numbers of people who need signifcant amout of alone time in order to function at all, this is against the current "mental health" narrative, so we are self isolating rather than having some much needed alone time.

    What I wonder does an autistic person look like? I think its similar with any hidden disability, people seem to think if you're not sat in a wheelchair dribbling and moaning then you can't be disabled, even if like some you're walking around with a ticking time bomb in your head. I dont' think theres an overdiagnosis as such, but with a diagnosis people arent empowered to do things for themselves, we're just suposed to sit passively in our pigeon holes and wait for something, anything, I don't know, but  do think that like so many areas of life, its become professionalised, we're not really encouraged to do things for ourselves, but leave it to someone else who knows best, except so often they don't. Instead they speak in jargon that only the inititated understand to exclude us from our own care and wellbeing.

    I can understand why those who care for those who are profoundly affected get cross, but I think their anger is misplaced, it shouldn't be a those of us less affected, but at the systems that make everything take so long and like wading through treacle and having to compete against others for resourses.

    A spectrum disorder is like saying someone has a cold, that covers anything from a runny nose and a tickly throat to something that puts you in bed for a couple of days feeling like you've been hit by a train. I think most people don't understand what makes a spectrum disorder different from a disease, if you have measles then every case will look largely the same with the same symptoms, but a spectrum looks a bit pick and mix. People don't understand that we don't get to choose how affected we are, what symptoms we get, but I'm damn sure most of us would choose differently had we ever been asked, except we're born this way. I suspect there's a bit of diagnosis envy from those who like a bandwagon to hop on, just as I'm sure there are people who get help that others don't because somehow they convince others they need it, leaving the rest of us wondering how on earth they got all this help.

  • A core diagnostic feature of ASD requires that a person has difficulties in daily living activities resulting in functional impairment.  I would suggest that most people here would fulfil that criteria, so even if ASD is reclassified and people get allocated to one of four new subtypes, or one of two new subtypes, or whatever it might be, it shouldn’t make much difference as we are still the same people, with the same difficulties. Any reclassification should take account of that. Our doctors and psychologists won’t suddenly decide that people who have been diagnosed don’t have functional impairment.

    From what I have read in New Scientist, there is no evidence to back up Uta Frith’s views. 

    I think that the world will always be full of people who can’t or won’t take people with hidden/and not so hidden disabilities seriously. It’s best just to ignore them. They are not the doctors who have your medical notes and reports.

    Here are links to some of the latest research. You should be able to access some of these articles without subscribing. https://www.newscientist.com/article-topic/autism/

  • I also have impression, that Uta Frith is only upset about people being misdiagnosed with autism.

    I agree with the post. My opinions are:

    1. Her most recent hypotheses/opinions are not backed by evidence (not yet at least),

    2. She said "I dont think they are lazy" or something close. Often one says that only if one actually thinks the opposite (may be just my cynicism tho),

    3. Papers talking about overdiagnosis are strange. One uses fMRI but I am unsure this is more precise (for diagnosis). If it were more precise, it would be good news.

    4. The fuss is primarily due to economical reasons. There is 1000% increase in depression since a few decades back but the support is mostly a pill (hence no scandal).

    5. However, if overdiagnosis with autism is real, it could be a big issue. So far, I see the increase more related to increased awareness, revised diagnostic tools, and maybe a society not made for all.

    6. Other researchers may be thinking of autistics with high support needs getting less support due to this. Of all, this is the most legitimate concern imho, but it is of a different kind.

    ------

    I will review these opinions if I see convincing evidence.

    conditions. Is she also upset about people,  or autistic people being misdiagnosed with other conditions? Just a rhetoric question

    I hope it is okay to reply even though it is rethoric: it is possible there will be some new label created, and a slightly different diagnostic criteria.