Against Those Against Self-Diagnosis

{Also posted to Tumblr and Medium.}

Content note: autism, medical gaslighting, sexism in medicine.

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If you trundle around speaking to people in various corners of the internet and you mention self-diagnosis, chances are you will find controversy or anger. Either two sides arguing over whether self-diagnosis is valid, or someone saying that those silly Tumblr people self-diagnosing for coolness points are hurting people who actually have the condition. A very popular condition to argue over is autism.

The sentiment usually goes, “you’ve googled your symptoms and you’ve decided that you have autism, but a doctor would never diagnose you because you’re just a 13-year old making it up to fit in.”

This has always made me feel really angry.

After years of noticing in my 20s that I was disproportionately making friends with and identifying with autistic people, I started to think that maybe a job working with autistic people specifically might be something that could work for me... and then my physical and mental health declined so far that I became unable to work. When I made yet another friend who later told me they were autistic, and I said to them that I thought maybe I might be autistic, they said, “yeah of course you are."

I was self-diagnosed for 1-2 years, until my physical and mental state got so bad that I was living well below the poverty line on standard short-term sickness benefits. I went to my GP to talk about my problems but was dismissed. I had to fight the NHS for over a year. I was referred to the Community Mental Health Team (CMHT), who told me that there was no specialist able to diagnose me and then expected me to just discharge myself. One doctor wrote in my medical notes that she didn’t think I was autistic, and that was added to my Disability Living Allowance (DLA) application, and I was denied the correct amount of money for my level of ability; she was a trainee CBT therapist. I had to push for months to get a referral to a locum specialist. No one was able to diagnose autism, in the second-largest city in Wales.

I can’t even count the number of times a less desperate or determined person than me would have given up. I was told so many times that I didn’t seem to be autistic, from my GP onward. When I told non-autistic people I thought I was autistic they seemed worried about me and they doubted me, including my own mother, a teacher in a specialist school for autistic children (all boys). But when I told autistic people they congratulated me and helped me. Even after being self-diagnosed for such a long time, when I finally got that letter saying I was autistic it took me weeks to come to terms with it. I used it to be awarded the correct amount of DLA, and I wrote to that trainee CBT therapist to tell her the harm that her misdiagnosis had done. She wrote back justifying her position.

So many autistic people are slipping through the net, because of doctors just not being very good at this. It’s not their fault that research progresses more slowly than autistic people’s understanding of themselves and their autistic peers, but they are failing us. And they are especially failing women and girls.

Being an undiagnosed autistic adult has been enormously difficult for a very long time, and to those of us on Tumblr who’re used to the idea that women and girls and nonbinary people are equally likely to be autistic it can be a huge shock to be faced with the sexism in medicine that is still very much prevalent. Men and boys are still much more likely to be diagnosed, and people who aren’t men have been trained since birth to mask their difficulties until they fall apart.

So yeah, when you’re autistic and not a mute white boy who rocks occasionally, it’s self-diagnosis or nothing. No one is going to notice that you’re autistic and refer you to the right specialist. You will have to notice on your own, and diagnose yourself, and then fight.

This morning I saw an article in my Twitter feed, and had to write this. Autism: 'hidden pool' of undiagnosed mothers with condition emerging. It’s about women who notice that their children are struggling, do research to find out why, find a specialist who diagnoses their child with autism - and along the way they realise that they are autistic too, and no one noticed for their whole life.

“There are far more undiagnosed mothers out there than we have ever thought,” said Dr Judith Gould, lead consultant and former director of the Lorna Wing Centre for Autism who developed the first and only female-specific diagnostic tests, and who trains doctors in how to recognise late adult female diagnosis.

“These women are coming to prominence now because there’s more information on autism in girls and women on the internet, so they can research their children and in doing so, diagnose themselves,” said Gould.

Professor Simon Baron-Cohen, founder of the Autism Research Centre at Cambridge University and the Class clinic, dedicated to diagnosing adults with autism, agreed: “[Undiagnosed mothers are] definitely a growing phenomenon. Putting a number on it is impossible but I’m sure it’s a big number because women seeking diagnoses of autism were likely to be dismissed until just a few years ago, because autism in females was thought to be very rare.”

The number of adults coming forward for diagnosis is rising:

...no national figures for adult diagnosis are available. Anecdotal evidence, however, suggests numbers are rising: Baron-Cohen says that four years ago, 100 cases in Cambridgeshire were referred to his clinic. In the first four months of 2016 alone, it received 400 referrals.

That’s a UK-gender-identity-clinic level of acceleration. And the sexism in medicine that prevents women, girls and presumably nonbinary people from being accurately diagnosed is starting to be corrected:

Autism among women and girls has only started to be widely acknowledged in the past two to three years. The men to women ratio is now recognised as being between 3:1 to 2:1, although some experts believe there are just as many females with autism as there are males.

I do believe that the ratio is 1:1. I have never noticed a difference in numbers when moving through the autistic community, for gender or birth assignment. I’m glad to see that doctors are getting better at accurately diagnosing people.

I am also completely unsurprised that online communities of autistic people diagnosing themselves and connecting with each other knew better than the medical community. I trust people to know themselves. I know one person who has been told he’s wrong about his autism because his social skills are too good - the result of being assigned female and various complicated life situations that don’t actually negate his autism but have given him skills he wouldn’t otherwise have. To me he fits into the autistic community perfectly. I am expecting him to be diagnosed maybe in a few years’ time, when doctors are as wise as their autistic patients.

I’m not just speaking in defence of those who self-diagnose. I am actively celebrating self-diagnosis. Until there are people willing to professionally diagnose us, self-diagnosis is for some people the only thing available.