Self-Diagnosis Stigma

By Nicole Beaver

 

I want to tell you a story.

 

Once upon a time, there was a little girl who was considered quirky by everyone. Her bullies thought she was stupid because of her sheltered Christian upbringing. Her friends thought she had poor social skills from not attending public school. Sure, maybe that had a thing or two to do with it, but nothing was really wrong with her, right? Well, the little girl knew the truth. Deep down, she knew she was different. She didn’t think the same way as her peers. She knew little about interactions and sometimes her behaviour was, well, a little abnormal. She knew that if she acted the wrong way, it’d be bad. She struggled a lot but managed to keep a facade up of just being quirky. And then one day, she wasn’t. A psychiatrist did an evaluation, sat her down, and explained to her family that the little girl had Autism Spectrum Disorder.

 

Boom. It was like a floodgate had opened. Suddenly, she had answers and could stop pretending. Well, okay, there was still a problem. The parents of the little girl didn’t know that she’d be needing documentation (proof that she was autistic) to help her in the future, so they didn’t get any. For the next two years, the girl struggled to get that proof from doctors and in the meantime had only one way of proving that she had an answer: self-diagnosis.

 

If it wasn’t obvious, that little girl was yours truly, and I’m using the story because I think it’s high time that someone brings up the subject of self-diagnosis. People normally advise against it. Why? If you do it and turn out not to have what you say you do, it’s kind of a dick move in society’s eyes. You’re seen as a fraud who is trying to get benefits that are only accessible to those with the actual problem. In fact, Psychology Today ran an article titled “The Dangers of Self Diagnosing,” which states that “[self-diagnosis is] essentially assuming that you know the subtleties that diagnosis constitutes. This can be very dangerous, as people who assume that they can surmise what is going on with themselves may miss [things]. For example, people with mood swings often think that they have [bipolar disorder]. However, mood swings are a symptom that can be a part of many different clinical scenarios.”

 

Now I agree that, in certain cases, you shouldn’t self-diagnose, because you’re not always right. But hey, neither is the doctor. When I was undergoing testing, they thought I was bipolar up until my parents were interviewed. In the book Aspergirls by Rudy Simone, the author details how misdiagnosis in women with ASD is quite common. Sometimes it’s chalked up to hysteria! I got lucky only because I had some very obvious symptoms despite being able to communicate and look people in the eye. My partner at the time was also unable to get a proper diagnosis and treatment and ended up having to self-diagnose as well, which made sense in their situation. Many people cannot afford to pay for a diagnosis—many people are misdiagnosed or not diagnosed at all because they don’t fit the standard criteria for it. Self-diagnosing is a double edged sword; it’s helpful, but it can also be dangerous.

 

I had to self-diagnose for two years and hit some nasty stigma. Even now, with the papers, I’ve been accused of faking it. I’m not suggesting that you should just self-diagnose, though. I understand that it’s frustrating, because it takes a lot out of you to chase down what you need. So this is what I suggest to you, my readers, who feel the need to self-diagnose: don’t make it your only option. If you want a diagnosis, fight for it. I had to, and I was lucky. I know a woman who, for almost a decade, struggled to get her own. Self-diagnose after you have done all your research, asked questions, and feel like you know for a fact that this is what you have. Stick to it until you do get the proper diagnosis.

 

For those of you wondering, having a diagnosis on paper does help. It’s written proof and can set you up for any helps you need in the future (like our school’s Learning Accomodation Services). You’re not stupid for self-diagnosing, I promise. It’s often the first step to seeking proper treatment.

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