My thoughts on Self-Diagnosis

This post is in danger of being a long and rambling one, but I do feel it’s a topic I need to write about. Goodness knows I’ve been thinking of it quite a lot! 

#SelfDxIsValid is a hashtag started on Twitter about a year ago, and although I was not on twitter upon its inception, I quickly embraced it when I became aware of it. It took me a little longer to become aware that it was a controversial hashtag. That happened when I encountered aggression and vitriol as a result of using it. And what upset me the most was that, apart from one or two professionals, most of those opposed to it were ‘Officially Diagnosed’ Autistics. They seemed not only very possessive of their label, and some displayed a worrying amount of ableism and self-hate, but also showed very strong black-and-white thinking. I bear no ill will towards these people as I genuinely don’t think they realise the harm they are doing. 

Because, getting an autism diagnosis is actually a very grey area. Yes, there are ‘official criteria’ but these are very much up to clinical interpretation, and often different tests are conducted by different professionals, reflecting both their own biases and also those of the country or area they are in. For example, my son was diagnosed by a multi-disciplinary team who were very much into ticking boxes, and conducting a gruelling battery of tests. And in a way that’s what they needed to do as it later became clear to me that they were fresh out of college and very inexperienced. My daughter got her diagnosis from the leading child psychiatrist in the country, who has written many books on autism, has over forty years of experience and is rumoured to be autistic himself. He was able to diagnose her in a much quicker and more efficient manner, using different tests but following the same criteria. He also relied on his experience and picked up on nuances others may have missed, as my daughter’s autism presents in a more atypical manner that doesn’t fit into many of the usual boxes. If she had been seen by those who diagnosed my son, she could have easily been denied a diagnosis. Yet she would have been no less autistic. 

And that’s diagnosing autistic children. When I enquired about diagnosing adults, I was told that there were no professionals in my area who could do that through the public health system, and given a short list of private practices, mostly on the other side of the country. And this is where more of the ‘not just black-or-white’ nuance about getting a diagnosis comes in. There are some people who say that self-diagnosed autistics should ‘just go get a diagnosis if you’re so convinced you’re autistic’. They do not take into account the many factors that might go against this. My husband and I have discussed whether or not I should seek an official diagnosis. And have decided against it. Here are some of our reasons:

Travel: as I’ve mentioned, most of those who diagnose autistic adults are based on the other side of the country. My various health issues, my car sickness, my anxiety and panic attacks while travelling, mean that practically the only time I go on long car rides is if I’m going to an airport, where it’s part of a much longer ordeal of getting somewhere and can’t be avoided. Even if I were to manage it, I would not arrive at a clinic in any fit shape to be tested for anything. 

Anxiety around Professionals: over the past few years, I have seen countless medical professionals and also a few psychologists. And I have been dismissed and treated badly by many of them. So I have now developed an intense anxiety around them. So, I’m afraid even if I did manage to travel to see someone, I may clam up and be unable to answer their questions truthfully, if at all. Especially if I dont trust them or we don’t ‘click’. 

Cost: obviously, seeing as I can’t seem to be able to access public services for this, I will have to pay for private assessment. I’ve heard that it can cost thousands of euro. Plus I would need to stay in a hotel overnight as I can’t manage day-trips. And I’d need to hire someone to look after the kids if my husband is away with work, which he is a lot these days. 

Family disruption: speaking of the kids, they rely on me a lot in all sorts of ways, and get very upset if someone else is looking after them. And I’ve only ever spent one night away from them, and that time my sister looked after them but she won’t be able to do  that so easily anymore as her own children are enough for her to handle. 

Lack of access to services: both my children have official autism diagnoses. And even with those, they have hardly any access to services, due to cutbacks. And as to services for adults, they are non-existent except maybe for young adults accessing supports in university or with employment. And if I did need accommodation with employment, I could get that with my Ehlers Danlos diagnosis. The same goes for disability benefit, which I’m not entitled to anyway as my husband earns over the income threshold. So, there is absolutely no ‘official’ benefit to an ‘official’ autism diagnosis for me. 

And I think maybe the word ‘diagnosis’ in ‘self-diagnosis’ is what is problematic. I do not feel I am ‘diagnosing’ myself when I say I am autistic. I am merely stating what I have observed and the conclusion I have come to. Initially, during the testing of my son and then my daughter, I realised that every answer I gave the professional about them was equally applicable to me. I had also at this time started reading up on autism. And had become ‘obsessed’ with reading about it! I started by reading books by ‘professionals’, and though so much of it made sense to me, it was when I started reading books by autistics themselves that I saw myself written down on paper. I then started reading their blogs, and finally interacting with them on Twitter. I talked to my (few) friends and family and they all agreed with me. This was not some five minute online questionnaire that I scored highly on. Though I did also take every single one of those I could find, and did score very highly on every one of them. And so, there is no doubt in my mind that I’m autistic. But I don’t like the term ‘diagnosis’ and think diagnosing autism is a flawed system for reasons I’ve explained earlier, and so prefer the term ‘self-identification’. But seeing the ‘self-dx’ hashtag exists and is widely used then I usually go with that. 

And what does this ‘self-diagnosis’ get me? 

It gives me a sense of self: I’ve always been aware that I was different from my peers, and knowing I’m autistic has helped me to explain why. It’s given me self-confidence and provided strategies for dealing with life that work better than anything I’ve tried before. It has helped me be unafraid and unashamed to be myself. And my life is immensely better as a result. 

It gives me a sense of community: when I first realised I was autistic, I tentatively reached out to the autistic community, first on Facebook and later on Twitter. To my utter surprise, they welcomed me with open arms. This was the first time in my life I was able to connect with strangers in any meaningful way. They offered me support and encouragement and have gone wonders for my mental health. I am forever grateful to them. 

It gives me a sense of purpose: I have never felt there was much meaning to my life. I suppose when my kids came along this was less true. But I never felt there was much else apart from them that I could fight for or advocate for. But watching autistic self-advocates has opened my eyes and made me aware of what I can achieve in my own little way. For example, I started this blog and do think it has helped a few people. And again that has gone wonders for my mental health. It’s all connected. 

So, what are the problems with self-diagnosis? For some autistics, they feel the need for validation that only an official diagnosis gives them. I feel no such need. I trust my own judgement, especially as I’ve done so much research. At the same time, I don’t go around telling people I’m autistic. But I think that would be the same even if I had an official diagnosis!

Are there people who self-diagnose but are not actually autistic? Sure. Some may have other neurodivergent conditions that overlap with autism, like OCD or ADHD. Some might have mental health issues like Bipolar Disorder or Borderline Personality Disorder and might benefit from a professional diagnosis. There may be those (rare I think) who are claiming to be autistic just to feel special or look for attention. There may be those (rarer I think) who seek to make money out of their diagnosis. But in my opinion these are few and far between. And even those who wrongly diagnose themselves, if they benefit from interacting with the autistic community, then I feel they should be welcome too. Because ultimately the autistic community I have encountered is all about support, about friendship and a deep sense of connection. And I don’t think that should change based on what may be written on a piece of headed paper. 

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7 thoughts on “My thoughts on Self-Diagnosis

  1. Yes, yes, and more yes! I love this post. I agree 100%. I noticed the same thing when I expressed a pro-self-DX stance – a very disturbing amount of ableism. It also reeked of elitism and privilege. Almost like the “officially” diagnosed folks felt defensive or threatened in some way by the idea of us (the un-formally-diagnosed) into their secret club or something. I was disturbed by the lack of support and empathy toward fellow spectrum peeps.

    Yep, I could have written every word in your post – except that you did it better 😊❤️

    Thanks for an awesome post!

    Cheers!
    ~The Silent Wave 😊

    Liked by 2 people

  2. I have an official diagnosis that I know I was lucky to get. So many others like me can’t get any diagnosis as there aren’t the services available, their health problems make assessments inaccessible or the professionals have little to no understanding of Autism, much less how it presents in adults. A self-diagnosis is no less real than a professional one, in fact I would argue a self-diagnosis is more likely to be correct as we know ourselves better than anyone else, certainly better than some stranger who meets us in an artificial environment to ask us a bunch of questions which might not apply or be able to be accurately answered and then they base their ‘results’ on their own knowledge of something they have never experienced. And that’s not including masking and other conditions ‘hiding’ traits of Autism so it makes it harder to pick up on.

    Liked by 2 people

    1. I agree! I also believe fellow autistic people are better at spotting ‘one of us’ than NT professionals. And I do think there’s something along the lines of ‘diagnosed privilege’ and I appreciate when those with an official diagnosis understand how lucky they are, and when they support those of us without one. So thank you for that.

      Liked by 2 people

  3. Maybe this is an ableist reaction partly due to fear of loss of power and money, but without diagnosis do not get benefits. Austerity Cuts is hurting everyone and programs getting less or no funding so people fight for less and less, money needs to be put back into the economy. Having disabilities is often hard and often exclusion contributes to poverty. True, if someone sees themselves as autistic and benefits from community that is good.

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    1. Access to benefits is why I got my children diagnosed. Without a diagnosis they would not get the support they get in school or any other accommodations. And even then, they don’t get that much. But, for me, as an adult, there are no benefits I could apply for. There are so many autistic teenagers about to ‘age out of the system’. It’s like as soon as they have their 18th birthday, they become invisible.

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  4. It is distressing to read about harms and deaths due to austerity cuts around the globe. There are so many folks with disabilities that need services and people that need employment. It seems like it is important to have a work program that would help both unemployed and people with disabilities.People may think this is soft or cheesy or wasteful, but supporting fellow humans to leave no one behind really ends up helping everyone feel better about themselves and thus behave better. Also, then we could all rest easier knowing our children will be supported on into adulthood.

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