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The truth about self-diagnosis in the autistic community

4 mins read

As an autistic person, it saddens me just how low diagnosis is in our community, particularly among women, and LGBT+ folk. Over the last few years, the autistic community has seen a rise in self-diagnosis among these groups.

There continues to be this belief that self-diagnosis is not valid, because you are not qualified as a medical professional is, when it comes to mental health. The reason this has extended into the autism community is because the myth that autism is a mental health condition is still perpetuated today, to the annoyance of many of us.

When I talk about self-diagnosis I am talking only about self-diagnosis in the autistic community. Autism is not a mental health condition. It is neurodevelopmental.

Neurotypical people often believe that autistic people are mentally ill. When you conflate brain activity which results in social impairment to chemical imbalances that lead to conditions such as depression and anxiety, we run into a lot of difficulties.

Sometimes this comes from a place of ignorance. But at other times it is deliberate and carries a harmful intention. This is particularly true within communities that view autism as an epidemic that has been growing, rather than raised awareness leading to increasing diagnoses.

Calling autism an epidemic also gives this harmful idea that we can be cured, and it’s easy to see why. Epidemics are often associated with health conditions and right now we have a mental health crisis in the UK among young people, especially men.

But to reiterate for the 100th time, autism is not a mental health condition.

Now to get into the nitty gritty of self diagnosis, one has to observe the outdated criteria required for an official diagnosis. In autistic women, it ignores many aspects such as masking, and increased social awareness.

The autism research literature over the years has also ignored sensory issues in autism, which is illogical given that sensory difficulties also lead to difficulties in communication and interaction.

On speaking to individuals who have sensory issues, and feel that they should seek a diagnosis, the result has often been dismissal or outright denial by GPs or even psychologists. This is attributed to outdated National Institute for Health and Excellence (NICE) guidelines as well as outdated diagnoses tests such as the Autism Spectrum Quotient (AQ-10).

This year, a harmful discrepancy within the NICE guidelines was discovered. Rather than suggesting that a score of 6 and higher on the AQ-10 should mean the GP refers the patient, the guidelines read ‘higher than 6’ which means scores of 6 have actually been excluded.

These guidelines have been in place for years, and to me it is unacceptable that this ambiguity could have meant the difference between whether patients were referred for an autism diagnosis or not. It is a failure on the part of the health institute.

All these reasons, and many more, have led to people self-diagnosing with autism, and other neurodivergent conditions such as ADHD. The community welcomes these people with open arms, as they understand to a good extent what this experience is like.

Rather than blaming or shaming the individual for self-diagnosis, the onus should be on the health institutions to do better. That includes eliminating any ambiguities in the guidelines, as well as recognising sensory and perceptual issues in autistic people who have not been officially diagnosed.

Only then, will we be able to create a more welcoming environment for autistic and neurodivergent people, and make our society more accommodating and inclusive.

Feature image credit: Pexels

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PhD - Environmental Science. Aspiring research scientist. Like to blog things science, and how it affects us.

3 Comments

  1. As someone with autism this makes mad “There continues to be this belief that self-diagnosis is not valid, because you are not qualified as a medical professional is, when it comes to mental health. ” replace mental health with the other word you used neurodevelopmental and you hit nail on the “There continues to be this belief that self-diagnosis is not valid, because you are not qualified as a medical professional is, when it comes to neurodevelopmental conditions.” and you have made it right and that is one of the many reasons self-diagnosis is so ablest.

    Many of the people self diagnosis them selves with autism are doing so to be special and get views on platforms such Tiktok which just harms people with autism. However are people who think they could have autism and nothing wrong with that as long as go and see that medical professional to see if they have not or any other condition they may have, you own it your self to get to the bottom of it.

    The community does not welcome these these self diagnosed people the issues they have took over these much needed safe spaces for those with Autism and ADHD, and I’m stick of people saying that okay and that these bigots are valid when they are most ablest people out there.

    • Hi there. Just so you know when I said that sentence you refer to, I meant that in a wider context. People still confuse autism with mental health which is a problem, and thus discussions on self diagnosis sometimes lead from talking about autism to discussing mental health conditions and medical professionals.

      I don’t agree that many people are doing it on TikTok for vjews. I believe its a small minority in what is otherwise a very welcoming community. There have been issues on social media platforms with people taking advantage of us because of our very nature. As I have stated in the article, it is very hard for someone who genuinely wants to pursue a diagnosis to receive one and therefore you can’t expect people to owe it to themselves to get help when that help ans the routes to getting it are far from accessible.

      Our community has very much been supportive of self diagnosing autistic folk. Whether or not you agree with it is up to you, but TikTok fishers have nothing on the systemic problems that autistic people face.

      • Sorry but it is out outdated thinking that it’s hard to get an autism diagnosis if you live in a first world country. It is pretty easy if you really are autistic, only issues is it can take a while to do so but that still better than just saying you have autism. And not like wasting for the appointment puts the rest of you life on hold, there is no down side if you have autism to try and get a diagnosis and it damaging to try and like there is.

        Take reddit autism forum is made up 50% of those who have self-diagnosed and they are changing how the topics are talked about, it is no longer a small minority. and this so common in so many places both online and in the real world. And these bigots are growing in numbers.

        the community that welcomes these ablest are ones that have ran out all those with real autism, I have seen happen in real life where safe places are no longer usable for us. Example there was a safe space at college I went to for those with autism. What happened is a few students who proudly self-diagnosed started using it and started being very loud which many student who really did have autism couldn’t deal with, another issues is the room could only hold so many people and these self-diagnosed who clearly didn’t have autism were taking places of those that needed to use the room. And those self-diagnosed had no sympathy at all if some asked if they could be quieter or turn off repetitive music or really anything they would act very hostile.

        I’m sick of the damage these assholes are doing. It’s fine to think you have autism and use that as a first step to find out if you really do, what is wrong and damaging to self-diagnosis

        I agree people with autistic such as my self do face systemic issues and one of these issues is these people who mock us by self diagnosis, you wouldn’t defend Rachel Dolezal and say she is really black and what she is doing is not racist, so why can’t you call these bigots out for mocking those with autism? I don’t get this double stranded

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