What is autism self diagnosis?
Now if you guys follow me on Instagram, you will have seen me talking about autism self diagnosis. This has probably begged the question in your mind as to what autism self diagnosis is.
So, through this blog post, I’ll aim to explain as best I can what it is and why people like me are doing it.
This post will look at:
- What is self diagnosis?
- How does it work?
- Can you really ‘diagnose’ yourself?
- Attitudes to autism self diagnosis
- Why have I had to do it?
What is self diagnosis?
Autism self diagnosis pretty much does what it says on the tin. It means that people identify as being autistic without receiving a formal diagnosis. Now, when I first heard this I was like ‘That doesn’t sound right’ and ‘Surely a doctor has to tell you that you’re autistic in a formal way?’. According to the majority of the autistic community, this just isn’t the case.
The reason that this happens is down to the inequality entrenched within the criteria they use to diagnose someone as autistic. The criteria was created some 70 years ago and although updates have been made along the way, the general structure and traits have remained the same. The problem is that when the study was first done by Leo Kanner in 1943, there were four times as many boys as girls. Thus meaning that the basis of the research was based predominantly on autistic boys.
This is no help for autistic females because in order to receive an autism diagnosis, we have to fit into something that wasn’t meant for us. Which is why so many females are diagnosed later in life, misdiagnosed with mental health conditions like BPD and sometimes need a second opinion if they’ve been assessed but the assessor didn’t have much experience with females.
So many females, having been ignored or not believed or quietened by professionals, have to settle on autism self diagnosis.
How does it work?
Autism self diagnosis is a fact finding and a discovering-who-you-are process. On instruction from my counsellor, I went online and read all that I could about being autistic, what the traits are, how they affect me and how I can help myself while waiting for an assessment. I re-read through the 24 page referral that I submitted (and which was accepted) to remind myself of how I’ve been affected throughout my life.
I then went in search of bloggers who were telling their stories and social media communities and content creators talking about what it is to be autistic. This was incredibly helpful for me. It made me feel less alone. It made me feel like I wasn’t alone and it made me feel like although I didn’t fit into this world, there were others out there thinking the same thing.
I bought some great books by autistic female authors and would definitely recommend the following:
- Autism in Heels by Jennifer (Cook) O’Toole
- Spectrum Women: Walking To The Beat of Autism
- Drama Queen by Sara Gibbs
- Odd Girl Out by Laura James
I can’t say I’ve thrown myself wholeheartedly into self diagnosis but I’m finding it useful in terms of understanding myself better. It’s tricky going from a mindset of a diagnosis being official and something the doctor does to taking control and helping myself.
Can you really ‘diagnose’ yourself?
This is where it gets difficult. Technically, no you can’t diagnose yourself.
You need a registered psychiatrist to formally diagnose you and add it to your records. The term ‘autism self diagnosis’ is a bit deceiving that way. I feel like a better term would be ‘autistic self identification’ – that way it can’t be argued with because it’s you yourself identifying with a group of people, not ‘diagnosing’.
Many people find it really helpful and so are doing this in order to take back the power and help themselves in a world where no one can or will help them. They’re learning more about who they are and what they’re capable of. They’re also learning that they’re not weird or strange or lazy or rude or just plain odd. They’re learning that their brains just work differently to most other people’s. And that’s OK.
Autism self diagnosis is quite liberating and at the same time, terrifying too.
Attitudes to autism self diagnosis
Over on my Instagram page I’ve been talking a lot about my experiences and autism self diagnosis. This has gone down 90% well but 10% shouty.
Some of the autistic community who have received a formal diagnosis early on in life feel that those self diagnosing are:
- Attention seeking
- Taking resources away from ‘real’ autistic people
- Trying to get sympathy
- ‘Putting it on’
- Using autism as an excuse
- Invalidating their diagnosis
- Invalidating their struggles
And I totally get that. I mean, would you want someone telling everybody they had depression when they didn’t? Or that they’d been traumatised when they hadn’t? I get it.
However, many of the people who I’ve encountered who have these extreme opinions are mainly:
- Received a formal diagnosis in childhood
- Angry that they’ve had to struggle but ‘self diagnosed people don’t’
- Privileged to have been recognised as autistic
It’s amazing the level of abuse I’ve had from these types of people and quite frankly, it’s OK. They’re angry at life and what cards they’ve been dealt.
Being female and living undiagnosed for 30 years, struggling to understand the world and why you don’t seem to fit it, is just as valid and important.
Going by the lovely people I’ve spoken to, those who decide to self diagnose are generally:
- People of Colour (POC)
- Adult females
- Assigned Female At Birth (AFAB)
- Low income
It’s maddening how unequal the diagnostic criteria is that it excludes whole communities of people. If you’re a young, white male, the criteria is in your favour.
So, moving onto the positives of autism self diagnosis:
- Being able to understand yourself more
- Learning to like yourself
- Learning to understand that it’s not your fault you don’t fit
- Knowing that your brain just works differently to everyone else’s
- Reassurance that there’s nothing ‘wrong’ with you
Since my counsellor mentioned autism to me, things have made so much sense. Ways I acted when I was younger, why I always felt like a square peg in a round hole and what it all meant.
Why have I had to do it?
In November 2020, when I was told I’d been living for four years with a misdiagnosis of borderline personality disorder (BPD), I was also told that I was autistic.
Here’s where things got complicated. The psychiatrist said she was 95% sure but wasn’t qualified to diagnose me and that I had to go through the local autism service to be assessed.
After referring myself (because she said it would be quicker if I did it instead of her), I am now on an NHS waiting list for an autism assessment which looks like it could happen in December 2021.
However, between my BPD misdiagnosis being acknowledged and waiting for a formal autism assessment, I’m in diagnosis limbo.
Speaking to my autistic counsellor, she suggested autism self diagnosis. This seemed a bit of strange concept considering I’ve spent much of my adult life with doctors giving me official diagnosed labels like anxiety, BPD, depression and so on. I asked ‘what on Earth is autism self diagnosis?’ and she explained that because of the inequality within the autism diagnostic process and criteria, many people decide to self diagnose and identify as autistic.
This blew my brain a bit. And when I mentioned this to the psychiatrist and the autism service, they advised that I identify as a self diagnosed autistic until I get assessed.
As mentioned, I am not running into this blindly. There’s always that little bit of me that feels like an imposter and always thinks of worst case scenarios: ‘What if I’m not autistic? What if I am and I’ve been undiagnosed for my whole life?’ However, since it being mentioned to me, everything has made more sense. And if that’s the case, then I’m not ashamed of it. When you’ve spent your whole life thinking you were wrong but then you discover that your mind is just different, it’s a HUGE and POSITIVE REVELATION.
And I know many other people feel the same way. Despite what society and indeed a small proportion of diagnosed autistics believe. As I’ve said, the communities that I’m a part of have been so supportive and validating. With anything, there’s always a small minority that argue and get defensive.
Below are a few things that I found useful when considering self diagnosis:
- Buying a copy of ‘I Think I Might Be Autistic’ by Cynthia Kim (can’t rate this book enough!)
- Doing internet research on what the assessment criteria is and saving in a word document
- Work through the traits and provide a few examples for each
- Make sure to include examples from when you were a kid, when you were a teen and then as an adult, at work and at home
- The more ‘proof’ you can include, the better.
- Follow autistic content creators on social media
- Join some communities where self diagnosed autistics are accepted (Autistic Women Living Authentically on Facebook at brill!)
- Try not to pay attention to the negative press around self diagnosis
At the end of the day, autism self diagnosis is something to help you and not to satisfy anyone else. If you have a strong gut feeling that you might be autistic, see where it leads you. You might do the research and think ‘Actually, I don’t think I am’ or ‘OMG this explains so much about me’.
The best of luck and thank you for reading as always,