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I used to think self-diagnosis was bad; here's what changed my mind

Myths, barriers, and necessary steps to diagnosis

A phrenology bust framed by cracked glass

When I was around 10, I was professionally diagnosed as autistic. When I was assessed again before starting university as an adult, my autism diagnosis was confirmed. As someone who has been diagnosed with autism twice, I know a bit about what it’s like to live as an autistic person.

Between the time of my first and second diagnoses, I changed as a person, and one of the ways I changed was my views towards self-diagnosis. I used to be against self-diagnosis. I thought that only people who’d been professionally diagnosed by a psychiatrist or psychologist could go calling themselves autistic, and that anyone else was somehow lying or cheating.

When in my early twenties, a friend started self-diagnosing as autistic, I didn’t like this. At the time, I felt like autism was a burden I’d been struggling with for years, and other people didn’t understand what that was like. I felt that by claiming she was autistic, without any diagnosis, my friend was belittling my struggles. I also felt that she didn’t seem autistic to me, so it didn’t seem right for her to start saying she was.

Although I didn’t tell my friend how I felt about her self-diagnosing, it is something that I felt uncomfortable with. Since then, my feelings have changed.

My changing views on self-diagnosis

When my friend started saying she was autistic, I did not understand what it was like for someone to self-diagnose, or why they would do it. I thought that if someone was actually autistic, they would just go and get a professional diagnosis, and if they didn’t do that, then they must just be faking it for attention.

In the years since my friend’s self-diagnosis, my views have changed. I no longer believe the various myths about self-diagnosis, like thinking it is something people fake for attention or special treatment. Instead, I believe that in almost all circumstances, self-diagnosis is just as valid and acceptable as a professional diagnosis.

To explain why my views changed, let’s talk about some of these myths:

A maze of hallways and stair cases, as seen from above

Myths and misconceptions about self-diagnosis

  • MYTH: Self-diagnosis is done for attention

Think about it this way: Do you have an autism diagnosis? How many times have you wanted to bring attention to the fact? The chances are, probably not at all often. The same is true for people who self-diagnose. They are not saying they are autistic to be “trendy” or to make some kind of “statement” or to get noticed by people - they are doing so because it is what makes sense to them.

  • MYTH: Self-diagnosis is something people decide on a whim

People don’t just randomly decide “Hey, I think I’m autistic!” Instead, if someone is self-diagnosing, they have probably spent a lot of time thinking about it. They might have spent a long time reading about autism, for example, and thinking how what they read compares to their own experiences. They might have tried talking with friends who are autistic. They could have asked questions on forums, or taken online tests, to try to get an idea of whether they might be autistic. In fact, before self-diagnosing, most people will have tried multiple, if not all, of these things.

  • MYTH: “You don’t look autistic, so you must be faking your self-diagnosis”

This is something I believed about my friend. I thought she didn’t look autistic, so she obviously couldn’t be. However, the truth is that there isn’t one single “autistic look”, and instead autism can present in many different ways for many different people. You don’t know what’s happening inside someone else’s head, and just because they may not outwardly look autistic, it doesn’t mean they can’t be.

  • MYTH: Self-diagnosis is not as valid as a professional diagnosis

Some people (including me of the past!) think that self-diagnosis is not a “proper” diagnosis, and you can’t really be autistic unless a professional has diagnosed you. This is not true. At the very least, self-diagnosis can be an important first step towards getting a professional diagnosis. However, for many people, getting a professional diagnosis may be impractical or even impossible.

An old chain link gate, locked closed by a length of chain.

Why self-diagnosis is okay, and sometimes necessary

While some people use self-diagnosis as a first step towards getting a professional diagnosis, for many people, professional diagnosis may not even be an option. There can be multiple reasons for this.

  • Financial difficulties

I was lucky. Both of my diagnoses were fully covered, so I didn’t have to pay anything. However, if you’re not so lucky, then getting a diagnosis can cost over $3,000. This is much more than most people are able to pay.

  • Availability

It can also be hard sometimes to even find someone who can make a professional diagnosis. A lot of psychiatrists, for example, will only work with children, so if you’re an adult, you may not be able to get a diagnosis. There can also be very long waitlists to get a diagnosis, which further limits the availability.

  • Gender/racial barriers

Sadly, prejudice can also be a big obstacle to getting diagnosed. Many doctors are reluctant to diagnose women or girls with autism, for example, because of a mistaken belief autism mostly affects just males. Unfortunately, this leads to a cycle where fewer girls are diagnosed, so doctors think girls don’t get autism, so fewer girls are diagnosed, and so doctors think girls don’t get autism, so fewer girls are diagnosed…

Similarly, people of colour are less likely to be diagnosed with autism–not because it’s less common, but because doctors are more reluctant to make a diagnosis.

With all of these barriers, it’s no surprise that sometimes people are forced to self-diagnose. So, if someone is self-diagnosing as autistic, accept the fact that it’s not done to be ‘trendy’ or to ‘get special attention’ – it’s because self-diagnosis may be their only option.

However, if you are able to get a professional diagnosis, does this mean you should do?

When you should seek professional diagnosis

While self-diagnosis is perfectly valid, if a professional diagnosis is readily available, it may be worth considering. It will help relieve any nagging self-doubts you may have. Sadly, a professional diagnosis is also often necessary if you want to seek accommodations, for example being allowed to take exams in quieter rooms if you’re a student.

So, if you are able to get a professional diagnosis, does this mean you have to? Well, that depends on you. It can occasionally be useful, especially if you’re a student, for example. Is it okay though to decide you’re happy with your own self-diagnosis, and don’t want to go through the hassle of a professional diagnosis? Absolutely!

A psychiatrist makes notes as a mother and child speak to each other.

In summary:

Although I used to be against self-diagnosis, my views have changed. I realized that a lot of the things I thought about self-diagnosis were inaccurate, or just plain wrong. There may be a very, very small percentage of people who fake a self-diagnosis for questionable motives, but those cases are extremely rare. Most people who self-diagnose do so because they’ve considered it carefully, and it’s what makes sense–and it’s sometimes the only kind of diagnosis they can get.

All those years ago, when my friend started self-diagnosing, I thought she was somehow taking something from me or belittling my struggles. I thought she couldn’t possibly be autistic, so she must have been faking it for some reason. I thought that people could only be autistic if they had a professional diagnosis. Since then, I’ve grown as a person, and realized it’s not as simple as that. And as for thinking my friend must have been faking it because she didn’t “look autistic”? Well, since then she’s actually had a professional diagnosis, which just shows how little I knew.

Are there a select few occasions where a professional diagnosis can be useful? Yes.

Is self-diagnosis important, acceptable, and just as valid in the vast majority of cases? Absolutely yes.

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