Part 37: The First Windmill

Hello, and welcome back to The Autistic Writer. How’s it going? I’m not just asking to be polite, I’m interested. In the big scheme of things, this blog is still a baby but I’m pleased with how many people are visiting, reading, liking, following, and so on. I’d really like to hear from you, too. If you don’t want to drop a hello or a comment on this site, you can find me in all the usual online haunts: Facebook, Twitter, Reddit, Instagram, Tumblr, Pinterest, and Buy Me A Coffee. I’d love to hear from you.

I thought I had a good idea where this week’s blog was going to go, but then something happened. I came across an online situation which I knew I would have to share here. Actually, both subjects came from online interactions, and they are both issues I feel strongly about. Although I’m beginning to wonder if there’s something vaguely Quixotic about the way I try to tackle autism issues.

All my life, I have been looking for the opportunity to describe myself as vaguely or somewhat Quixotic, but there hasn’t really been an appropriate time. I make no apologies for revelling in this moment, now. The teenage me who lived through a terrifying cold war that might have superheated explosively into nuclear horror at the drop of a hat, and who desperately looked for some way to do something about it that didn’t involve actually having to do something about it, would be cheering if he knew. I digress. I don’t particularly want this blog to turn into Darren’s Adventures on Social Media, but the stuff I’ve been involved with recently is too good to ignore. Do I try to cover both subjects in one blog? Do I scrap my first idea to go with the second? It was a toughie, but I’ve decided to stick with my first option, and cover the second next time. I’m pretty sure next week’s blog will be a source of some fierce debate. You just wait and see.

Okay, on with this week’s show. My first lance-down tilt at an online windmill this week wasn’t the most controversial, but it was thought-provoking, and I’m fortunate that a few people I spoke to online to have given me permission to quote them directly. I don’t always ask for permission to quote people, especially when it’s something already public, like a Tweet that is out there for the world to see. But some interactions this week felt a bit more personal, so I asked. It all begin on Twitter, with this publicly available tweet from the amazing Brandi Thompson:

The whole approach to autism diagnosis is something I’ve had to challenge myself about. I had previously, somewhat proudly, had the legend #DiagnosedAutistic on my Twitter bio until, as I wrote about recently, I started to have doubts about the medical model of autism, and the appropriateness of terms like diagnosed, and disorder in relation to autistic people. Brandi’s tweet resonated with me. I decided I wanted to raise the issue with some other autistic people, so I went to the lovely community on Reddit, with this:

A number of people came back with some really interesting and thought-provoking answers. I can’t show them all, but here is a selection of directly quoted responses (the only changes I have made are to correct a few typos).

Respondent 1: I got it free. But I think self-diagnosis is dangerous. I read people’s posts daily here that say they are autistic because they don’t mix well with others etc. They take 1 piece and use that to give themselves a diagnosis. That does not work.

A good friend of mine just had a year of talks with a psychiatrist to see what kind of problem he had. Seems he had a air problem when being born and because of that he had some small brain damage. Because he had that brain damage he learned himself an “autistic” way of thinking. So all tests showed autism, but other tests showed this brain damage. In the end he is not autistic. If he had self-diagnosed he would have thought he was autistic. What does this matter you now think. I did not want kids (got 1 in the end anyway love of my life) because I’m autistic and you can pass it along. He might have felt the same, never gotten kids because he did not want to pass it along while all the time that would not have been a problem.

Trust in people that spend years learning to make a diagnoses.

That said, some people made a great point against me a week or two ago. There are ofc (sic) reasons when self-diagnoses work, if you don’t have the money or live somewhere where there are reasons you cant get tested. You use it to learn some handles on your daily life.

This person makes some interesting points about wrong diagnoses, and the potential pitfalls. But the argument has a flaw if it is directed at self-diagnosis: the friend in the example had been tested for autism, and found to be autistic; a diagnosis that was only changed after further tests revealed brain damage. If autism tests (I’m not sure what tests refers to, but lets just roll with it) diagnosed autism, then maybe this person’s brain damage was coincidental, and he was autistic as well?

Respondent 2: On the East Coast in the US I found two options within workable distance. One didn’t work out. The other did and was $5000. I think it was worth it but I can’t say for sure yet as it was pretty recent. It may help me more over the long run I guess.

As far as I’m concerned, $5000 is a lot of money. Here in the UK, we have the NHS, which I love. It means diagnosis is free at the point of access. I’m of the opinion that in a civilised society, healthcare should always be free at the point of use, so it shocks and infuriates me to think that cost might be a barrier to any kind of diagnosis, not just autism. How many people worldwide are going undiagnosed, and losing out on support, disability benefits, and peace of mind, just because they can’t afford it? Is this the world we want to live in?

Respondent 3: I technically could have used the NHS but I couldn’t even get a GP appointment (you had to call every morning at 8.30 for an appointment that day and hope they had a slot, which didn’t work for my work hours or anxiety). I left it for years because I couldn’t face the stress of it, then when I had the money I paid a private clinic who sent 2 psychologists to my house, which also meant my mum (also autistic) could attend.

An official diagnosis hasn’t made any practical difference for me but mentally I feel better. If I hadn’t had the money I doubt I would ever had gone for a diagnosis.

As much as I love the NHS, the respondent here makes a point I can identify with: Access to GPs has become more difficult over the last few years. There are a host of reasons for this, largely political, and this isn’t the time or place to discuss that issue.

More relevant here, I think, is the respondent’s comment that he felt mentally better after the diagnosis. I too felt that sense of relief after my diagnosis. I felt I had an answer for what had been troubling me all my life – even though at that stage I understood so little about autism that all I really had was a label to point at.

Also, we have the observation that the respondent would probably not have pursued a diagnosis if he hadn’t been in possession of the money to do so. Considering he felt better after the diagnosis, this is a real concern. Being autistic in a world made by and for neurotypical people is tough. For autistic people who aren’t even sure if they are autistic because they don’t have access to a diagnosis, it’s even harder, and explains why so many autistic people suffer with depression, anxiety, and suicidal thoughts. If self-diagnosis brings some peace to people in that situation, should we really be decrying it?

Respondent 4: My husband payed almost €800 for the tests and €1400 for the neuropsychiatric to make the diagnosis. We got €500 back from health insurance.  I need to mention I live in Belgium.

Again, we are talking about large amounts of money, here.

Respondent 5: I didn’t pay directly, luckily I had insurance cover the cost.

Further question from Darren: Thanks for the reply. Can I ask you, if you hadn’t had insurance to cover the cost, would you still have pursued a diagnosis?

I definitely wouldn’t have. I had no idea what autism was at the time and even if I had known more about it, I’m self-aware that I never would have made the connection. I insisted to my psychiatrist that I thought I had social anxiety – he did not agree, but it took quite a while to settle on a diagnosis of autism. A previous psychiatrist had actually misdiagnosed me with psychosis instead, citing my flat affect. That was an older doctor and not to make assumptions, but he was the old guard so to speak, so he probably did not consider autism a likely diagnosis for a female patient. The main reason that I was so persistent in seeking psychiatric support was because I was certain I was not psychotic and I knew I still needed help.

Tl;dr I initially was misdiagnosed and without insurance, would not have had the resources to persist in seeking the appropriate treatment.

Again we have a mention of a misdiagnosis, but in different context. I think it’s plain to see that if a correct diagnosis had not been arrived at, it could have had serious repercussions for our respondent. Health insurance came to the rescue, as does the NHS for some people in the UK. But what happens when people don’t have those resources to fall back on? What other option have they got but self-diagnosis?

What this respondent also raises is the non-financial issues that might prevent diagnosis. The subject of the so-called gender divide in autism is a tricky one, and we don’t yet have definitive explanations as to why the number of reported instances in females is lower than in males. But old school doctors who don’t want to see autism in females could be part of the problem.

Respondent 6: I think if someone is going to self-identify as autistic, they owe it to themselves to exhaust every reasonable resource and do extensive research.

I’ve researched what I could and now am on a waiting list to get diagnosed, so I see zero reason to self-diagnose as I’ll have an answer sometime this year hopefully.

For someone that doesn’t have access to a doctor though, it may help to self-identify if they’ve put in all the research and that’s the only thing that makes sense to them, especially if it helps them accept themselves.

This respondent makes a good point. There is a world of difference between saying, “I think I might be autistic,” and actually going through a process of self-diagnosis. I’ve said elsewhere, and I still maintain, that it’s hard to imagine anyone going through the traumatic experience of trying to work out for themselves whether they are autistic, and getting it wrong. If someone undertakes the research, there’s going to be a reason for it; at some point the person has started to think, I’m different, and I’m unhappy, and I need to know why.

I find it interesting when the respondent says he is, on a waiting list to get diagnosed, so I see zero reason to self-diagnose . I self-diagnosed during the nineteen-month wait between my GP referring me, and actually undergoing the assessment. I got a self-diagnosis and a formal diagnosis. It’s not necessarily just one or the other. For all I know, there are people who got a formal diagnosis and didn’t trust it, so researched it, and carried out a self-diagnosis. (If you’ve done that, please let me know in the comments section.) Another point I want to make here might sound odd, but if you think it through, it does give a slightly different perspective on the issue: A diagnosis, formal or otherwise, does not make you autistic. If you are autistic, you have always been autistic. The diagnosis process is a tool, (and not infallible, even in the hands of an expert) to help you understand yourself.

Those of us who were diagnosed as adults will be familiar with the uncertainty, the anxiety, the crushing depression, the imposter syndrome, and the fear, leading to that diagnosis. Self-diagnosis is not undertaken lightly. The principles of basic autism (IE, minus the co-occurring problems that some people confuse with autism) are reasonably simple. Many of the online tests that have the disclaimer about not being diagnostic are actually very good indicators. Self-diagnosis is serious, practical, business. Brandi is profoundly correct in her tweet. There is a system in play that is rigged against the majority; the people most in need.

Okay, it’s time for a kind of disclaimer. Those who have followed my learning curve and development as this blog has progressed will be aware of my rejection of the medical model of autism. It’s a big thought to deal with, and part of it is the question of whether it is even appropriate to think of autism in terms of diagnosis; perhaps identification is a better term for something that is not actually an illness. But I’m not sure whether that would make things easier or harder for people trying to get to the bottom of whether they are autistic or not. While the medical model ultimately leads to discrimination (by marking autistic people as having something wrong with them), the upside currently is that a formal diagnosis can help people get access to support and benefits. By choosing a term such as identifying as autistic, and eschewing the formal diagnosis route, a person might find it more difficult to access the relevant support. So what would be needed here is a radical change in the language we use to describe autism alongside a change in government policy in many places. In the UK, theoretically, you should be covered under the Equality Act 2010 as an autistic person, even if you don’t have a formal diagnosis. In practice, it probably won’t work out that way.

Here’s a thought process:

  • Autism is not an illness, or even a disorder – these terms are arbitrary constructs based on a medical model of autism that stigmatises autistic people, and empowers a global multi-billion-dollar industry of exploitation. The NHS website clearly states autism is not an illness.
  • Diagnosis is not an appropriate term for something that is not an illness – because it simply acts as a lever to maintain the medical model: socially, the term diagnosis will always associate with illness.
  • But formal diagnosis is the only way many autistic people can access support.
  • Support is necessary because being autistic in a world made by and for neurotypical people is disabling.
  • But many autistic people are prevented from getting a formal diagnosis by lack of funds or other issues.
  • Diagnosis is not fit for purpose, then, because of the problems with the medical model and barriers to formal diagnosis.
  • True autism acceptance needs to include a change in language, meaning people being recognised as identified autistic rather than diagnosed autistic, thereby depowering the medical model.
  • True autism acceptance also needs to include the removal of financial and other barriers to assessment, and a recognised, transparent route to free self-assessment tools for those who require that method.

Well, that’s all I’ve got for this week. I’m itching to talk about next week’s content, but I’m going full-on delayed gratification. If my interactions in one corner of social media this week are anything to go by, it’s going to be somewhat inflammatory next week! I’ll see you then. Take care.

Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.

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