Adults with Late Diagnosed Autism Seek Identity and Support through the Neurodiversity Movement

A new study of autistic adults and their support networks post-diagnosis, reveals the crucial role of peer support and the neurodiversity community.

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A new study brings to the fore the experiences of those who have received a diagnosis of autism late in life, finding a sense of identity and belonging through the lens of neurodiversity and the support of their peers.

Very little has been known about adults diagnosed later in life with autism, especially those without intellectual difficulties. In this qualitative study, Huang and colleagues interviewed 19 autistic adults and four support persons in Australia on their experiences of formal and informal support post-diagnosis. The study sheds light on the experiences of adults who were diagnosed as autistic late in life, and it does so within the framework of neurodiversity, which understands autism as a natural variation in human neurology rather than as a deficit or a disorder.

“Our study highlighted autistic adults’ and their loved ones’ difficulties in finding suitable formal support after adulthood autism diagnosis. Navigating the gap between diagnosis and support required significant knowledge, time, finances, and personal resources, which was especially challenging considering adults’ reported difficulties with social communication, mental health, and employment,” the researchers write.
“Most of our participants endorsed the neurodiversity movement’s view of autism as a positive neurological difference, which encouraged self-acceptance and positive self-esteem.”

The study finds that peer support plays a crucial role in fostering a sense of belonging and empowerment among autistic adults, and this challenges traditional support paradigms. By shifting the focus from deficits to diverse neurological experiences, the study aligns with the evolving understanding of autism and mental health. It underscores the need for inclusive policies and community-based support systems that recognize the strengths of the autistic community.

The study was conducted by Yunhe Huang, Samuel R. C. Arnold, Kitty-Rose Foley, and Julian N. Trollor, affiliated with the Department of Developmental Disability Neuropsychiatry (3DN) at the Faculty of Medicine and Health, UNSW Sydney, and The Cooperative Research Centre for Living with Autism (Autism CRC) in Australia.

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Kelli Grant
Kelli has a Master's degree in Criminal Justice and is finishing a second Master's in Sociology. She believes that qualitative research methods can provide a deeper understanding of social systems and personal experiences. Drawing on her own lived experience with the mental health care system, as well as her academic training and advocacy work, Kelli aims to bring about a fundamental shift in how we approach mental health care. She resides in Kansas.

47 COMMENTS

  1. there are a few problems with this approach:
    1 “diverse neurological experiences,” as other articles on MIA have reported no appreciable neurological differences between those who identify or have a diagnosis of autism and those that don’t exist.
    2 ” the need for inclusive policies and community-based support systems that recognize the strengths of the autistic community” implies that those that have the same problems as those who do not identify as autistic or do not have an autism diagnosis do not need the same policies or community-based support which I think is inherently discriminatory.

    The whole article raises the questions who does and who does not deserve support and who should and who should not be included in society?

    Identity politics can only get us so far.

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    • This is a website dedicated to addressing problems within the mental healthcare system.
      As far as I know, there is not a single scientifically verifiable test to confirm nor deny what people self-report about their emotions and mental health in general.

      Similarly, if someone says they are autistic or neurodiverse, who are you to say that lacks credibility? I suspect that bothers you, given your choice to call it “Identity politics”, which to me are simply weasel-words that avoid saying “people doing and asking for things I personally disagree with”.

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      • “As far as I know, there is not a single scientifically verifiable test to confirm nor deny what people self-report about their emotions and mental health in general.”

        This is at best misleading, at worst disingenuous. You introduce a reductio ad absurdum (there’s no hard test to prove the validity of a diagnosis, so self-reports must be valid) in order to move the goalposts (self-reports are still valid as substitutes/surrogates of medical diagnoses so we should keep latter).

        “if someone says they are autistic or neurodiverse, who are you to say that lacks credibility?”

        It becomes an issue, a pretty big one, once the label becomes tied to real services, real goods and compensation. …which is happening right now.
        At that point, I believe the neurodiversity movement to be largely driven by people trying to advance their own cause at the cost of others. As someone else already wrote: “You can’t eat a cake and have it too.” In my opinion, what we see is just the continuation of the ancient struggle of man to advance his own interests and move up in the hierarchy (again at the cost of others). I had very nasty discussions with “late-diagnosed” autists over precisely that issue. Received death threats and what not.

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      • John did not say that people have no right to call themselves autistic or neurodiverse. He said that there is no evidence proving that there are “appreciable neurological differences between those who identify or have a diagnosis of autism and those that don’t”.

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        • I only said …”if someone says they are autistic or neurodiverse, who are you to say that lacks credibility?”

          In other words, we’re dealing with peoples’ experiences here, not whatever the hell may or may not be happening under the hood.

          Personally, I don’t give a crap whether my experiences come from “appreciable neurological differences”, ACE’s, vaccines, fluoride in the water, exposure to violent cartoons or whatever… My experiences are MY experiences, wherever they arose from. And so I am only concerned with alleviating the suffering. If that means calling myself Autistic, ADHD, or a furry ….until someone has a better idea then so be it.

          Because, as I wrote in another comment, I’m seeing a while lot of criticism of the term neurodiversity for not having any teeth, but a whole lot of nothing when it comes to creative solutions and workable alternatives.

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          • Obviously people’s suffering should be alleviated. But it should not be necessary to call oneself autistic, ADHD or any other label to obtain help. And if people are required to have a diagnosis of autism or ADHD to obtain help, this means that many people with obvious problems will not get help only because they don’t have one of these diagnoses (even the social interactions necessary to get diagnosed can be a problem for some people).

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          • 9-type-personality-theory by the Chilean psychiatrist Oscar Izacho from the 1950ies! – when you ask for a better theory of personality than what the psychiatric disease theories produce.

            A good introduction is offered on the website of the Enneagram Institute led by psychologists Don Riso and Ross Hudson.

            It’s actually very funny – at least when you have found out of the psy system (and survived) – when you see how people with totally different personality styles claim the same psychiatric illnesses. Or when you see totally different people that were diagnosed with the same “personality disorders” or “neurodiversion”. The enneagram theory helps to understand how crappy psychiatric and psychological academic work really is.

            I think that John Hoggett’s critique of the reference to “neuro” in these movements is spot on. I think that we can’t reduce personality or the psyche to the brain or to neural cells only. And as a matter of fact there is literally no empirical evidence that this is in any way valid.

            What I personally find the most annoying about the autism neurodiversion movement is that they claim that they are the only group that is different and consider everybody else as the same. But they are not!

            Actually what’s “wrong” with that group of people who have in psychiatric language “functional autistic” traits is that they (I also have it) have a deep seated believe that they are odd, what makes us odd and socially akward. But it is not an aberration it’s just one of nine personality style patterns.

            What they do is as if we would call one species of lime trees, for example one that doesn’t like to live in groups but grows better on their own, to call medically deviant, and all the others those from the colde regions, those from the mountains, those from the riverside sane – whereas every adaptation is just one natural devolepment.

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  2. As someone with a late diagnosis of autism I don’t know if I believe the diagnosis to be true for me. I think it’s just another label rabbit hole. I resonate with what John Hoggett says about ‘identity politics’. I tried to find support on a Facebook autistic community – I found no common ground with anyone there who seem to see their entire existence as refracted through the lens of their autistic condition.

    I think it’s late stage capitalism atomisation that leads groups of people to want to form ‘tribes’ where they have something in common – generally some form of support group.

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    • I was also late diagnosed. And I also don’t care for the label, the identity, or even the autism community. I have always been a loner, someone who is proud to be a self-taught polymath who isn’t easily influenced by current trends, politics or the herd.

      HOWEVER…none of that eliminates the very real difficulties people with autism, ADHD or any other kind of neurodivergence can experience throughout their lives, even if, like me, they’ve worked their ass off to mask it and get on with life without making a big fuss about their difficulties or the traumas they’ve experienced by being singled out for bullying, harassment or punishment by normal people and authority figures who don’t need a guidebook or the DSM to be able to easily pick out the “freaks”.

      The thing is, in “late stage capitalism” as you mentioned, it is NOT in the best interests of the ruling elites for regular people to identify with any tribe unless it is specifically for the kind of identity politics that they can use to easily manipulate folks into staying within the narrow mental/political/economic state that is most beneficial to them. (eg; those poor people wearing the funny red hats).

      Otherwise, you are expected to be 100% self sufficient and to never be in need of outside assistance from any community or allies who would otherwise help you get what the status quo want you to believe is easily attainable by anyone on their own, and that anyone who did not get it easily was simply not trying hard enough, or is a whiner engaging in “identity politics”.

      Sound familiar? For decades, terms like identity politics and socialism and communism are dog whistles used to denigrate and lessen the effectiveness of legitimate efforts to protect people from both individual and systemic injustices, whether it be via labour unions, the civil rights movement, Gay Pride, Mad Pride, Black Lives Matter and so on….and lately, efforts to have the unique needs of neurodivergent people recognized.

      They want you to hang on to your internalized ableism. They want you to feel like there’s nothing fundamentally different about you or anyone else, and that you don’t deserve any recognition let alone any help or concessions for whatever difficulties you’ve faced.

      And if you’re anywhere on the spectrum, then lordy, there are bound to have been and continue to be MANY.

      Sorry for the lengthy rant. I wish you well on your journey towards acceptance. It’s been a tough one for me too.

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      • I can relate to what you are saying, Mark. I, too, have always been a loner and have often been rejected by other people. I have also been struggling with eye contact etc. However, there are now many people who become convinced that they are autistic, though they don’t have problems with social functioning. Autism has become a very trendy diagnosis.

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      • Thanks Mark,

        I wish the same for you also.

        I thought the autism diagnosis would lead to some self acceptance but it didn’t. It was like being led into an empty room and being told that this was my place for the rest of my life and that it was always my place and I just hadn’t realised it. I was told at the end of the assessment in the final medical report and to my face by the psychologist “you’re autistic; this is why you can’t make something of yourself in life. This is the explanation for all your failures and inability to connect with others. You won’t be able to hold down a job. You were born with this disability and you will die with it’. This is a paraphrase of what she said. She literally did say to my mother ‘she was born with this disability and she will die with it.’ The implication was that my circumstances were fixed and unchangeable. As to what I could do with myself day to day, she suggested bizarrely that I join a book club. I had thought that the diagnosis would free me but it only made me feel more helpless and diminished.

        I agree with some of the other posters about the caché at the moment of being ‘autistic’. And I would agree with a comment from Joanna Badura about the presence on autism support sites of those who don’t appear at least on the surface to be ‘autistic’. I noticed on the support group on Facebook I was on that there are women there holding down very responsible jobs who were married with several children. The psychologist told me that I would be unable for a job and would struggle to manage to live on my own. But I had held down jobs, very difficult jobs for long periods and she took no account of that. It didn’t make sense to me that these women who clearly have great executive function have gotten the same diagnosis as me.

        The psychologist took no account of the multiple adverse childhood experiences I had had even though they were detailed in the biography I had to do up as part of the assessment. I had experienced all of them bar warfare. I had a follow up appointment to discuss the diagnosis and mentioned that I might the fit the label of C-PTSD but she was adamant that she took all factors into account.

        I agree with the comments made by others that we are all neurodiverse. As my main caretaker in childhood (a farmers daughter who was very wise) used to say to me ‘there no two people the same’. What puts an ‘autistic’ person into a different camp to what are considered neurotypical people? Is it just awkwardness and lack of social skills (or what used to be called tactlessness or shyness)? The only comparisons I can think of is ‘Eugene’ from the musical ‘Grease’ the plain awkward guy wearing glasses that everyone either ignored or bullied; or some of Stephen King’s characters like ‘Carrie’ the quiet and viciously bullied school girl; or ‘Holly Gibney’ the nervous woman in late middle age still living with her parents being alternatively medicated or institutionalised before Bill Hodges saved her by recognising her intellect and dogged focus and employing her.

        Is the autism label (and I am referring to level 1 autism or what used to be called Aspergers syndrome) just a catch all term for those who are highly anxious, very focused and obsessive about stuff that they are interested in and lack social skills in other words cognitive empathy? How much of that is congenital? And how much of that behaviour comes from trying to cope with trauma or neglect? If you have learnt in early childhood to be frightened of people, mightn’t you have difficulty maintaining eye contact? And is distracting yourself from intolerable circumstances that you can’t control as a child by focusing on an activity a response to keep you safe in severe distress rather than a genetic condition? How do you tell which is which?

        Then I read that many autistic children do not have ‘refrigerator mothers’ and have loving involved parents. There seems to be no rhyme or reason to the diagnosis. There are as with all the other mental health diagnoses except dementia no biomarkers at all but there seems to be few commonalities in the back history of those who are diagnosed.

        And are there just some people who don’t like the noise of the modern world, the insistence on blaring loud music in every public venue, the destruction of nature, the terror of silence? Are those people merely what used to be called ‘sensitive souls’ or are they to have a disorder applied to them also?

        I am confused by the methodology used to diagnose and disheartened also.

        As to the corporate world, I have been reading that the Gay Pride week is largely financed now by corporations. Certainly psychologists are making ‘big’ money by offering assessments to people. For an assessment that takes three and a half hours with a review of the medical notes and biography included the fee where I am averages well over a 1,000 euros. The ‘autism’ industry makes money for occupational therapists too and all the rest of the ‘mental health industry’ – psychotherapists and the like. There is money to be made in corralling people into groups and sticking labels on them whether it be autism or ADHD and that includes the pharmaceutical industry too.

        I agree with\ ButterlyS that it divides people from each other rather than uniting them by what they have in common. To be told that you have a different brain to ‘normal’ people and that they will never understand you and you will never understand or be able to connect with them is I have found anyway profoundly dispiriting.

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        • Many thanks for your thoughtful and thought-provoking comment. Yes, the autism label unfortunately divides people from each other. I have come across the depressing belief that autistic people can be understood and accepted only by other autistic people.

          What you say about eye contact is fascinating – I guess that my own problem with eye contact is indeed linked to fear. I don’t think that I have always had this problem. I have also noticed that I find it particularly difficult to have eye contact with male strangers.

          Just like you, I don’t think that e.g. an aversion to loud music should be seen as a disorder. Certain things are perceived as ‘abnormal’ only because of the nature of the modern societies.

          There are certainly people who are rejected and bullied for no clear reason. I have never been able to understand why some people reject or seem to reject me. “Autism” may sound like an appealing explanation, but it does not really explain anything. And I know many women diagnosed with autism who have never been rejected by their peers.

          I can’t even say that I lack or lacked social skills. I feel that some people are confused, repulsed or intimidated simply by my being “different” from most people they know, e.g. I am not afraid of expressing an unpopular opinion and I defend people who are attacked by others.

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        • When I was a kid, many of the schools in the country started testing kids’ fitness. I was not interested in sports at the time, so everyone was shocked to see that my time for the sprinting test was one of the fastest times in the country. It wasn’t a big deal to me, other than it made me rethink my reluctance to participate in organized sports.

          For the next ten years I ended up doing a lot of sports, even though I am not inherently competitive and feel very vulnerable and awkward in a team setting. But I made many friends that I would have struggled to make otherwise, I met my first girfriend through sports, I lost my virginity, yada yada yada. Sports got me out of the comfort zone I may have stuck with forever.

          I don’t understand why it might be considered elitist or divisive to identify a kid’s athletic abilities, if that helps them find out who they are, how to rise to a challenge, or to get along with other kids better.

          I think the same goes for autism. I don’t see how identifying someone’s differences can be automatically assumed to lead to division. How can you say it doesn’t – as was the case with me and sports – it doesn’t actually lead to inclusion?

          I’m not an expert on autism. But long before I ever began to think about it personally, I was always amazed at Temple Grandin and how she proudly called herself autistic, but not as an excuse to separate herself from others, only to explain why she sometimes struggled to integrate herself better.

          Is autism truly divisive? I’d like to see some proof, rather than mere speculation based on an ill-defined concept of equality or equity.

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          • Mark, it was quite interesting to read about your experiences. I am actually wondering what made you think that you are autistic. In fact, it is alleged that the vast majority of autistic people have so-called motor difficulties, but you excelled at sport!

            There is absolutely nothing wrong with identifying people’s differences, but the belief that “autistic” people have different brains or different “brain wiring” than “neurotypicals” is inherently divisive. The assumption is that “autistic” people are *biologically* different from “neurotypicals” and in my opinion it is a dangerous way of thinking.

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  3. I agree with John, I think it’s a misrepresentation of his point to accuse him of weasel words or denying people things – he implies the opposite in that anyone with a difficulty should be met with care, not because they are considered part of a special group. You don’t like that someone is critical of the validity of the diagnosis (and rightfully so, Autism is now a very poor construct – it is highly subjective, has questionable neurobiological basis and is very poorly defined at this point) and the divisive nature of trying to split people into types (othering), gatekeep and meet invalidation with more invalidation (for the people outside that in-group, who are implied to have lesser struggle, and no understanding of challenges or difficulties). I think John’s points are very fair and worth discussing.

    Maedhbh I’m with you, I also feel that I increasingly have very little in common and gain very little from the neurodiversity/autism spaces and literature – at times I’ve found them quite poisonous. They seem to want to have their cake and eat it, which undermines the whole thing. I guess that is what happens when you try to politicise and divide the human experience.

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    • As I wrote above, I object to the term identity politics because it is often used as a denigrating, divisive dog whistle to rally the intolerant troops around denying people the recognition and care they deserve. I also wrote I don’t personally care for any labels, even though I could collect them the way scouts collect patches.

      But you have to start somewhere.

      You have to have at least one word that describes a condition or experience that is unknown to others, so that they can see that the person being described deserves understanding, care and accommodations.

      That is, at least until the day everyone gets the care they need and deserve, period, no other questions or special requirements needed.

      Until then, this messy business of vaguely defined labels and conflicting diagnoses and gatekeepers and cliques and all that are necessary.

      Ask anyone who was forced to band together with others to fight for a common cause how messy it was. Just the other day Henry Louis Gates Jr. made that very point on the Late Show about black identity and the future of black people, saying that going way back to the early 1800’s, black people were not unified in their identity, arguing over what to call themselves, where they belonged, etc: https://youtu.be/AJVxMVlpbOY?si=dAshLWsmhfsFLgNC

      Neurodivergent is a term barely 20 years old. It’s natural that everyone is going to have a different idea about what that means.

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      • You may find Sami Timimi’s criticisms of autism and adhd interesting. I personally find nuerodiversity to have no meaning other than people are individuals. I find it hard to understand what else it means or what the political struggles the nuerodiversity movement want.

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        • I totally agree with you. The idea is that, as Szasz says, we’re dealing with metaphors. So changing the tropes has a persuasive rhetorical effect. It turns out that it’s much more difficult to assume a political, family or individual situation in dealing with existence, than to claim to have a peculiar neural configuration etc. This leap of reasoning is the most difficult.

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      • So now rather than consolidating and having services flexible to meet anyone’s need we have a division of services for all the little pocket labels and experiences and people are making even more money out of suffering meanwhile not much is shifting on the ground. And people are even more fenced off from one and other due to myths about there being no common ground or experiences. People can describe challenges in words without labels. I’m a person who finds social interaction more challenging than most people, I would prefer to be allowed to work from home as I’m more productive in that environment. Boom, no labels. Working from home benefits a multitude of people for various reasons across groups, let’s get together and demand this be an option for as many people as possible (for appropriate types of work).

        More of the same is just unimaginative- we have to have these labels because it’s always been this way, we have to band in little tribes because that’s just what we do. Hardly revolutionary, and not very progressive.

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          • Is autism truly a “pseudo scientific diagnosis”? Is there really zero scientific basis for the idea that some people think, feel and process sensory input differently, and that it causes immense difficulties with practically every aspect of their lives?

            Fine. I’m all for science. So let’s see all the data you’ve based your own supposedly non-pseudoscientific beliefs upon.

            Otherwise you have just one more opinion out there, which carries no more weight than the “identity politics” you object to.

            Better yet, instead of just telling people that it is harmful to identify as being autistic/ADHD/neurodivergent, how but offering some REAL workable alternatives that have proven success stories to back it up?

            Because people don’t identify as being autistic for shits and giggles, or for a cool reputation (there is none), or for the community (which is not entirely welcoming, based on just a couple of anecdotes here). They identify as being autistic because they are hurting and are looking for a solution to their pain, and you ain’t offering any.

            This is the basis of my objection to your criticism of identity politics. You want people to stop identifying as being _______? Then give them a good sound reason to, instead of just adding more baseless noise to the airwaves.

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          • Mark, obviously there are people who have immense difficulties. However, autism is now diagnosed in all kinds of people without any reliable scientific basis, any objective test which would show that someone’s brain is “autistic”.

            Many people now want to have a diagnosis of autism, though they don’t have problems with social functioning and don’t need help. I know lots of people who see autism as a “cool” identity. Maybe you don’t know such people. I feel bitter when women who have never been rejected by others, who have plenty of friends, loving husbands etc. claim that they are autistic.

            I have once noticed in an autistic women’s group on Facebook that (as it seemed) the other women had partners/spouses and saw it as completely normal. Me, at the age of 43 I have very little experience with relationships. The very idea of “dating” scares me. I have had only one relationship, with a man from another country I met online, and he actually sometimes used my lack of relationship experience to hurt me.

            I have very real difficulties and I lead a very isolated life. I know that people can reject me only because I seem “strange” to them, though I have been doing a lot to improve my social skills in recent years. There are now many people who claim that they are autistic, but who have never had the type of problems I have been facing since my childhood (isolation, bullying etc.).

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        • Where? Where is the proof of “effective help without diagnosis”?

          As I said before, I’m all for the scientific approach (when possible). But in that article I see plenty of claims “there is no scientific evidence that autism exists”, (without admitting there also is as yet no proof it does not), but also plenty of his own personal speculation that offering autism as a diagnosis is harmful.

          And yet he provides zero scientific proof that:

          A] people who received an autism diagnosis were worse off for it.
          B] people who did not receive an autism diagnosis were better off for it
          C] autism diagnoses are, overall, more harmful than helpful
          D] His own methods are more effective than other approaches, including autism diagnoses

          To recap: he provides ZERO scientific proof that of any of those points are anything but OPINIONS.

          In other words, he is engaging in precisely the kind of “scientism” he is critical of.

          You can’t defeat pseudoscience with….MORE pseudoscience.

          @moderator: many of my prior comments have disappeared

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          • See my emails to you.

            I don’t think he’s trying to prove his points are not opinions. He’s trying to show that the entire subject is based on opinion. I don’t think he is in a position or needs to do so. I think it’s OK to identify however you like, and it’s OK for him or you to have an opinion about it. It’s just not science.

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    • I have had a very negative experience with an association founded to support autistic women. First I was blocked from their Facebook page for leaving two comments the page admin clearly did not like (I did not say anything rude or confrontational). I was shocked and emailed the association to criticize their behaviour.

      To my utter surprise, the person who replied to me (and did not even sign her name) sent me a very angry and hostile reply where she accused me of being manipulative, though she did not know anything about me. This experience made me very mistrustful towards the neurodiversity/autism spaces.

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  4. My use of the term identity politics comes from my experience of being a gay man. We now have gay millionaires and rising lgbt homelessness. So my critique is a left wing critique. The benefits of a nuerodiversity diagnosis is it might get someone less damaging treatment than other mental health diagnosis but if its ADHD then you are likely to get ritalin, a dangerous drug from which drug companies get huge profits.
    As a politics we can do better.

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    • My apologies then, I assumed you were like the many right wingers who use the term identity politics as a dog whistle meant to attack and de-legitimize absolutely everything not in line with their own narrow values.

      I’m not going to bore you with my personal history other than to say that leading up to my journey into the mental healthcare system I was a straight A student. I was a talented artist and musician. I competed in the national championships in two different sports. I created a half dozen different inventions that I would hold patents for if I wasn’t so poor. I was offered acting and modelling jobs that I had to turn down because I was too shy and anxious, prompting me to finally seek help.

      I was subsequently put on practically every psychiatric medication that has ever existed.
      I’ve taken so many drugs it would make a funny Cheech and Chong skit had those meds and the misdiagnoses that prompted their prescriptions not done so much harm to me.

      I’m not a fan of labels because I defy most of them, and because every time they tried and failed to apply one to me, I was a little bit more worse off for the experience. I began my journey into the mental healthcare system because I needed help. I walked away needing much more.

      So excuse my language, but what the f**k am I supposed to do now?

      Everyone here is a critic. Many are adamant that psychiatry, psychiatric medications, and the DSM must be abolished, along with many of the labels associated with psychiatry, plus emerging ones such as “neurodivergent”.

      And yet I see few creative solutions being offered for anyone, let alone for those of us who had already been significantly harmed by the mental healthcare system long before they encountered MIA or any similar resources.

      “Neurodivergent” is a vague term, I’ll give you that. But where do people who seem to fit the bill of being neurodivergent go for competent, informed assistance without using that term or autism or ADHD or fill in the blank_______?

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      • Mark, what actually makes you think that you have to label yourself as “neurodivergent” or “autistic” to get the assistance you need? Why these labels and not some other one(s)?

        You say that you had to turn down jobs because of shyness and anxiety. I can relate to it – I am currently trying to get some assistance on the basis of a diagnosis of severe social phobia. I don’t like labels, but I find this label much more helpful than the “neurodivergence” label or the “autism” label which both suggest that humanity is divided into two types of people.

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        • For the last time, I am NOT attached to the autism label. I never said I was. I think some of the comments here have tried to mischaracterize my comments as proof that I am attached to the autism label, perhaps because that would make me seem inflexible and anti-science.

          Whatever.

          I am a damned good creative problem solver, and when it comes to solving problems, I am not interested in labels and I am not interested in what other people think. I am only interested in whatever it takes to arrive at the solution I set out to solve, and as a super-intense person, I don’t give up on those goals easily.

          Other people, perhaps most people, are not so intensely dedicated to arriving at the truth no matter what. They are merely satisfied with chipping in their 2 cents, parroting criticisms they’ve heard from someone else, and then moving on with no intention of investigating any further.

          Such is the case with the autism and neurodivergence labels.

          So what if they aren’t purely scientific terms? Here’s a news flash: Neither are depression, anxiety, schizophrenia and every label that describes a disorder or emotional state that nevertheless are VERY REAL in that there is no doubt that they deeply affect a massive portion of our society.

          Are these anti-labelists going to walk into the psych ward and tell all the suicide and addictions survivors that they are delusional to call themselves anxious and depressed? That they should stop taking all their medications because there is no proof they have a chemical imbalance? That would be stupid and reckless at best, and cruel and devastating at worst.

          Same goes for autism. If millions of people say they get some understanding, comfort and community from their diagnosis, then whoever casually throws criticisms around should come up with some damned good proof that all these poor, deluded people are all actually doing more harm than good.

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          • I think that you have misunderstood my comment, Mark. I have never implied that you are anti-science or inflexible. I asked what makes you think that you have to label yourself as “neurodivergent” or “autistic” to get the assistance you need. You have not answered my question.

            I am certainly not “parroting criticisms I’ve heard from someone else”. I am sharing my own thoughts. I feel that you are too quick to jump to negative and patronizing assumptions about other people and their way of thinking.

            Anxiety and depression are real emotional states, not labels. As to the schizophrenia label, it has been criticized and questioned for a long time.

            You seem to imply that people should not criticize the autism label because “millions of people” find the label helpful. Well, people can find all kinds of diagnostic labels helpful, but others have the right to question these labels. And there are actually people who have been diagnosed with autism (including me) who are criticizing this label and/or saying that autism is now overdiagnosed.

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        • Hi Joanna

          Thanks for discussing so engagingly and honestly. I love it. I fully support your view that one (of several) problems with the autism spectrum illness is that it claims that there are a majority of normal people and then a group that is by nature different and needs a medical diagnosis.

          I think there is a big misunderstanding among those who diagnose or identify with that concept that it is possible to identify with the idea of being psychiatrically different and at the same time to leave the medical model and the psychiatric paradigm behind.

          This is nothing but the privilege of a small group of people who are highly successful. For example Barack Obama, Hannah Arendt, and Audrey Hepburn clearly show or showed such personality traits as are collected under the autism concept but were able to find the support and a niche for themselves where they could unlock their great potentials. So why pathologizing these normal, common, wide spread personality traits?

          I also think that other theories like for example the concept of the avoidant personality disorder or concepts as social anxiety are more convincing because they only pathologize what indeed brings suffering to those who have these patterns and show a way to unlearn self-inhibiting patterns and learn others and grow and mature the personality.

          I showed all the ailments of avoidant personality disorder in the wake of violent experiences as a child and receving no adequate support to deal with it. What worked for me was yoga and meditation to calm my ruminating mind and stressed out body, desensitivization to fear and anxiety (I used to teachings for the Tibetan woman warrior as offered in Peme Chödron’s book When Things Fall Apart). Thirdly, it was self-help and social therapy groups that I benefitted and never individual psychotherapy.

          I am not against anybody using “autism” as a start when they have similar problems as I had. But I hope that everyone realises that you can use this as a starting point for growth and hopefully sooner or later you can drop the label again.

          Last but not least: There is a theory that was first crafted by a Chilean psychiatrist in the 1950. It is called the Enneagram theory or the nine-types-personality-theory. The psychiatric diagnoses of avoidant and autistic personality disorders are described in type number 5.

          I can highly recommend to read everything about type 5 who has theses patterns because Oscar Ichazo’s theory is explaining personality (and what happens with personality under stress and without support) better than the psychiatric models and ideas.

          For example psychiatry has the idea that personality is shaped by parents and harmful experiences. But that’s not correct as every kindergarten teacher will tell you. Personality is “given” naturally and develops within the first years into one of the types that Ichazo was able to describe and it seems that environmental factors play a subordinate role in this forming of the basic personality patterns. And also it is not the quality of outside nurturing or adverse experiences that change a person fundamentally. It is quite the opposite, it is only along of one’s foundational personality pattern that you can grow or develop psychological problems.

          Psychiatry actually knows the pathological forms of the nine personality patterns in its description of the personality disorders. However, because they have undergone several attempts of refashioning they lose more and more of their explanatory power and researchers begin to mix up descriptions of different types or worse claim that it is possible to have several personalities ( ; ) )

          You find an excellent introduction to the theory of the nine types on the website of the Enneagram Institute. On Youtube you find an introduction by Beatrice Chestnut who has produced nine videos where she discusses the types with groups of people who share the same basic personality traits.

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          • Typing from your self-description as a protector of those who are bullied I’d have a look at personality type 8, not five. Women who show that personality are Susan Sonntag and Oprah Winfrey.

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          • Lina, thanks a lot for your comments and your kind words. I am going to read about the Enneagram theory. Great to know that you have found various ways to help yourself.

            I think that the autism concept has become much too broad and vague (though of course people may feel that their own diagnosis of autism is helpful). As you said, some personality traits are now portrayed as “autistic”, though there is no real reason to portray them in this way.

            And I actually suspect that some personality traits and behaviours are now portrayed as “autistic” for cultural reasons. E.g. in today’s Western culture a child who spends most of the time reading and is not interested in sport may be seen as “autistic” because of the mainstream cultural assumptions.

            I, too, think that it is better to focus on problems which cause suffering instead of implying that the increasingly vague “autism” is the cause of the person’s distress. “Autism” seemingly explains all kinds of things, but does not really explain anything.

            I know a man diagnosed with autism who is unable to talk and to live independently. I also know a highly successful and happily married university professor who decided to get diagnosed with autism at the age of 47. Both these people are now labelled as “autistic”, but they don’t seem to have anything in common. One of them is in a very difficult situation, while the other one is thriving. For her “autism” is mainly a way of labelling traits which make her feel different from most other women.

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      • Mark, thanks so much for sharing some of your experiences. I can relate. I have very similar experiences. I found out of the psy system and its “interventions” four years ago and it has harmed me severely and over a long time.

        You ask “what the f**k am I supposed to do now?”

        I agree that it is very difficult to find support as someone who was harmed by psychiatry and is much worse when they find out again. And it shouldn’t be that way.

        However, there are many great resources that you can learn to use.

        I described it somewhere above already. For me it was a mix of yoga, meditation, desensitiviation training to fear and anxiety with the teachings of the Tibetan woman warrior, and last but not least several different group formats.

        Since you asked what you should do, I feel authorized to give you some advice. Start with yoga on Youtube, Uliana from Ukraine is my favourite teacher at the moment. Begin with two lessons a week and try to establish a daily practice over one year. Get into your body. If you have a lot of stress coming up through the practice go for long walks and allow all the feelings to wash through you.

        What I benefitted greatly of is the Wellness Recovery Action Plan group training online. I did it with very experienced facilitators at the Copeland Center. I recommend it a lot.

        Research and see for yourself what you would like to try.

        To grief the harm of psychiatry that you have experienced – I am very sorry – get comfortable with the fact that we are alone with this. Nobody sympathizes with the victims of psychiatry. Either people are adversarial towards us, or, if they do sympathize, they can’t deal with the amount of pain and harm that was done to us and can’t support us either.

        Here I can recommend to establish a meditation and compassion practice. Sharon Salzberg is one of the most accomplished teachers and I think there are many resources online for free.

        Her story is that her father suffered from severe mental health problems and was probably harmed in a New York state clinic when she was a child. He died in the midst of this and probably from the harm of psychiatry. Soon afterwards her mother died. She said that she was so confused and in so much pain when she came out of school that she directly went to India to learn meditation when she heard that this was helpful.
        It is! : )

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  5. To Joanna’s comment above; (there is no more space below the following comment):

    “Obviously people’s suffering should be alleviated. But it should not be necessary to call oneself autistic, ADHD or any other label to obtain help.”

    Of course it shouldn’t. I never argued for that point.

    All I’ve been trying to say is this: we don’t live in that world yet, do we?

    We don’t live in a world where you can simply say “I feel uncomfortable/anxious/overwhelmed/understimulated/etc, and be
    A] believed
    b] immediately receive appropriate accommodations or treatment
    C] all of the above WITHOUT a diagnosis.

    Correct?
    In this f***ed up world with our bass-ackwards education and healthcare systems, you gotta do what you gotta do.
    Correct?

    So when someone suggests anyone who calls themselves autistic is engaging in “Identity Politics”, my first thought is that they are speaking from privilege.

    They don’t need a label or a diagnosis to get whatever they need to get by? Good for them. But that doesn’t mean many of us can get by without those things, and we shouldn’t be expected to go without them based on whatever their principles suggest we should be doing.

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    • I fully understand what you mean, Mark. Labels/diagnoses are necessary to get help – as you
      said, “you gotta do what you gotta do”. And it is very true that many people are too privileged to understand the situation of those who need help.

      However, the “autistic” label is now unfortunately increasingly used mainly as an identity label. And I actually know people who have created thriving businesses thanks to their own diagnosis of autism, including a psychologist who runs a for-profit foundation which offers very expensive services to people who think that they or their children are or may be autistic.

      The psychologist decided to get diagnosed while working with “autistic” children. She actually said in one of her interviews that she was earlier diagnosed with antisocial personality disorder…

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      • Who cares if a relatively few are using the autism label for personal gain? NO sector of psychology or mental health is without its dishonest opportunists, including many of the professionals whose deeds are reported about in the pages here at MIA. Wherever you have vulnerable people, the con-men and grifters are sure to follow.

        Just remember this: autism is NOT cool. It never was and likely never will be. Most people are apathetic about autism if not still actively wary or even hostile towards people they know or suspect have it. So IMO anyone who would go to the trouble of getting a diagnosis just to be cool is sadly misleading themselves.

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        • I have to disagree with you, Mark. First of all, I suspect that there are quite many people who use the autism label for personal gain because the label is no longer stigmatizing – unlike e.g. the schizophrenia label.

          For many people “autism” has become a cool identity. There are people who WANT to be diagnosed with autism and are ready to spend a lot of money to get this diagnosis. This trend is encouraged by articles, books etc. which suggest that there are plenty of undiagnosed autistic people, especially women.

          You say that “most people are apathetic about autism if not still actively wary or even hostile towards people they know or suspect have it” – not in my experience. People may be wary or hostile towards someone they see as weird, annoying or a loser. But they will not treat in the same way an “autistic” person who is outgoing, successful, trendy etc.

          To sum it up, “freaks” and “losers” continue to face hostility, whether or not they are labelled or label themselves as autistic. At the same time popular, outgoing, successful “autistic” people are perceived in a very positive way.

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          • Joanna, I’m sorry your experiences with your autism diagnosis and subsequent interactions with the autism community have been disappointing. I really am. I know too well the pain of rejection and promises of care and acceptance not being kept. However, your personal pain is not proof that the autism diagnosis in general is harmful.

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          • Mark, thanks a lot for your kind and compassionate words, but I have never implied that the autism diagnosis in general is harmful. What I am questioning is the way of thinking behind this label and its increasing vagueness.

            I am also baffled by the fact that plenty of people who don’t seem to have any problems with social functioning have been diagnosed with autism. I think, too, that the autism diagnosis can be harmful, e.g. if a person becomes convinced that s/he can never be accepted and understood by “neurotypicals” and becomes depressed for this reason.

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  6. Is Autism a pseudoscientific diagnosis – long answer ‘sort of’ short answer ‘yes’. I really do not have the time or the energy to pull up hundreds of papers but the best summary I can think of is this one from 2016: https://link.springer.com/article/10.1007/s40489-016-0085-x

    NIMH also found that there is so little to distinguish meaningfully between genetics in the gen pop and people with Autism (where there are no learning disabilities or other known genetic syndromes at play – though they keep writing articles pretending otherwise but once you get to the meat of it, it rapidly becomes very weak). In the UK we do no genetic and neurological testing to establish a diagnosis of Autism or ADHD (we rarely even bother to do cognitive testing so it purely subjective based on behaviour and self-report). So no there isn’t a valid or reliable neurobiological element to distinguish these things from any expected variation.

    This doesn’t mean that there isn’t variation but the divisions we construct around them are false and do not translate so directly to behaviour – at least that is where the evidence is pointing me (4 years of study), and I’m highly specious of generalisation of studies based on 30-40 people’s brain scans being of any meaningful relevance to a global population (which is often what you find in neuro studies, even most genetic studies tend to be quite small) not to mention a lot of other overlaps, obscurification and contradiction. You can believe whatever makes you feel better Mark, if you’re very interested find someone to do a functional MRI, genetic testing etc. Maybe you as an individual are statistically more different than the rest of us, who knows, but I have this diagnosis and can promise you that I do not show any detectable neurobiological ‘abnormalities’ or differences.

    Autism at this point is now so broad that I’m not sure it is even possible to reliably study it anymore from a biological perspective (researchers have complained/written articles on this point), there are so many confounds because of the complexity of human experiences and biology, and the diversity the condition now has. We don’t even have a unified theory to work from. Again nobody is saying people don’t struggle or that people shouldn’t be helped.

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  7. For the last 25 years I’ve heard nearly identical arguments made against the “gifted” label, that it is divisive and harmful because the label will go to their heads, that it will create an elitist “us vs them” dynamic, and so on.

    Except according to the experts who study and work with gifted kids and adults, those fears do not come true, the opposite happens. Once gifted people come to understand the reason they feel weird and separate from others is giftedness, they stop hating themselves so much and begin to heal, becoming better citizens in the process.

    I see no reason to believe this may not also be the case with autism.

    However I could be wrong. But while I have my own doubts and questions about autism and neurodivergence, the diagnosis process, the autism community and so on, I stayed away from bringing them up here because I am careful. So I get upset when others are less careful, stating that they have little doubt that an autism diagnosis is harmful and divisive, with seemingly no attention paid to the possibility their arguments may be baseless or reactionary, let alone that they may (ironically), actually be harmful and divisive.

    This discussion has taken far too much of my time and energy. As with others who are engaging in the “identity politics” of autism (I jest 😛 ), I get easily overwhelmed and burned out, so this has to be my last comment on the subject.

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    • There is an enormous difference between labelling someone as “gifted” (anyone can be described as gifted in some sense) and the belief that people are irreversibly divided into “autistic” and “neurotypical” ones.

      I have never claimed that an autism diagnosis is harmful and divisive in itself. However, I think that the idea that humanity is divided into two types of people with different “brain wiring” who will never be able to truly understand each other is both harmful and divisive.

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