Part 6 of My “What Is Autism” Series
So in the autistic community there is this thing called self-diagnosis, it’s not accepted by all autistic people, but it is slowly being accepted by a lot more people than it was. Self diagnosis is simply doing research on autism, and talking to other autistic people, and coming to the conclusion you are autistic yourself, without any professional diagnosing you. Now if this sounds like it’s not valid to you, I totally understand, because I remember when I felt the exact same way. So I’m going to explain why I used to find self diagnosis to be frivolous and silly but eventually came to accept it.
I Like When My House Isn’t A Cratering Ruin, I Must Have OCD!
So readers, I’m guessing you’re familiar with the concept I’m talking about, but if you’re not, let me explain. You are talking to someone, who, well, doesn’t look like they’ve escaped from a shark attack, or a volcano, or an atomic blast. They don’t look like they fell into a massive pile of slurry, and equally, whatever possessions they have with them, be they car keys, some books, or a bag, don’t like they fell into a massive pile of slurry. They look like they employ an effort to keep themselves and their possessions clean that is not atypical of the human population. But because they don’t look like they escaped from a malevolent slime pit of evil (that one’s good, I think I’ll use that one again!), they say things like “I’m such a neat freak, I think I have OCD!”
NO,NO,NO,NO,NO,NO,NO!!!!
OCD is a very complex condition that affects everybody who has it differently, and may not involve any fixation on cleanliness at all. Just because you looked at the lives of medieval peasants and said, “That’s not for me, I think I would purchase a bar of soap while at the local soap dispensary,” does not mean you have OCD! Also I have a feeling this post is going to be a long one, so I haven’t actually bothered to research whether medieval peasants were caked in dirt, because I’m pretty sure if I read ten different historical articles on whether or not medieval peasants lived hygienic lives I’d get seventy four different answers. Imagine if I declared myself to have chronic fatigue syndrome because I’m tired after a long day (who isn’t?) Imagine if I declared myself to have motor neuron disease because my muscles are stiff after a long cycle. The “I have OCD” thing always seemed so silly, because it was declared for the most frivolous of reasons, such as a person having a perfectly logical filing system for all of their books and documents. This was the background of why I came to find self diagnosis, really, really silly.
But Self Diagnosis Doesn’t Have to Be Frivolous
So my feelings on people casually declaring themselves to have OCD because one time they took a bath are the same, I still think that that’s silly. But what if somebody told me they had concluded that they had OCD, or were autistic, or were dyspraxic, because they spent more hours than they could count researching those conditions, because they’ve lost count of how many people with these conditions they’ve spoken to, and from speaking to them it’s obvious that their knowledge on whatever condition they state they have is incredibly vast. This would surely amount to something more valid, far more valid, than simply declaring yourself to have OCD because one time shower gel was half price so you decided to buy it.
Am I Self Diagnosed?
The short answer to this is no, I was diagnosed as autistic in 2010. But there’s a longer answer to this question I could give. I was diagnosed in 2010, but went into denial until the year 2021. So, getting the official piece of paper stating that I’m autistic seemed to have little or no bearing on the fact that I regard myself as autistic, and that I didn’t before. I concluded I was autistic by reflecting on my experiences during Covid and by talking to other autists. Also, I was diagnosed on the basis of vocals stims, need for sameness, and difficulty with social interaction. But on further reflection I realized I had other autistic traits, such as executive function problems and sensory issues. So, this next sentence is going to be confusing but, I think it’s fair to say that, I’m an officially diagnosed autistic person, who is also self diagnosed.
So Why Don’t Self Diagnosed Autists Just Get Officially Diagnosed?
Well part of it is that it’s very, very expensive. My diagnosis cost me a fair bit of money, and it was only because of a very specific circumstance in my life that I was able to afford it, I had only eight months before been made redundant, and my bank account was fuller than it had ever been at the time. So, diagnosis is not cheap! And that’s just in Ireland. Good luck getting a diagnosis in the shitshow that is the American health care system, where spending that much money would mean not having the money to take care of other issues such as physical health conditions that you may have.
There are other issues also, such as autism in women and girls often not being recognized, because a psychologist may have been trained to recognize male autism and its traits, which are often, but not always, a bit different from female autism. Here’s an article on that:
You see, there’s this idea that a lot of people have that autism is just for boys, but I assure you, autism is for everyone! It’s not just for guys like me, and it’s not just for guys. Autistic people can be male, female, non-binary, be of any race or be from any country. In fact it’s possible, probable in fact, that if you’re autistic you’re also neurodivergent in some other way. So autism is also for people who are already neurodivergent!
So these would be two big reasons why self diagnosis might be appropriate. Some people don’t have the money for a diagnosis, and some women or girls may have even gone for a diagnosis, and didn’t get one because they were female. And perhaps after doing a lot of research on the subject of misdiagnosis of women and girls, they realized that they were autistic.
Was It Worth Me Getting My Official Diagnosis?
Yes, it means I have access to state benefits that require that piece of paper. So I’m quite happy to have my official diagnosis. But I’m not sure it has anything to do with the fact that I happily identify as autistic, that I regard it as an important part of what makes me me. That feeling I got from learning more about autism in my own time.
It’s Important To Note That Your Official Diagnosis Isn’t Worth A Damn To People Who Have Decided You’re Not Autistic
If you want people in your life to recognise your autism status, getting an official diagnosis won’t necessarily stop them from concluding that you’re not really autistic. Here’s a link to another post I wrote, dripping with sarcasm but I think it’s relevant to this discussion:
A major problem in our society is that a lot of people, and I mean a lot, consider themselves experts on autism. It doesn’t matter whether it’s your own self diagnosis, or an official diagnosis from somebody with so many qualifications that they had to buy a bigger house to fit all of their qualifications, which they could easily do, due to all of their qualifications. I don’t know what causes “Autism Expertise Disorder,” with subjects like music, sport, history or space exploration, few have any problem admitting, “I’m just not an expert on this topic,” but for some reason the fact that you occupy space somewhere on this planet makes you fully qualified to speak on autism.
Let me tell you one of the most insulting things that was ever said to me. To put it into context, this person does not regard self diagnosis as valid. For the more than a decade of me being in denial of my autism, they never once doubted that I had the almighty piece of paper. But as soon as I embraced my autism, and became comfortable with who I am, what I am, all of a sudden, they started saying I must be self diagnosed. Because there is no way an autistic person can possibly be happy with the way their brain is wired.
So, if a person’s motivation for wanting an official diagnosis is so that they can finally tell the people in their lives that they are autistic, unfortunately, it doesn’t always work that way.
So, What If You Self Diagnose And You Make A Mistake?
So, let’s say you’re some what confident that you’re autistic, and you don’t want to get the almighty piece of paper. Maybe you don’t have the money, maybe you don’t trust that you can get a diagnosis as a woman, maybe there are reasons whether good or bad that you don’t trust psychologists that much. Are you in danger of making a mistake? Yes, there is that danger, but you can’t rule that out even when going for an official diagnosis. If you start worrying that you could get it wrong, well, psychologists can also make mistakes, there is no way to absolutely, fully rule out the possibility of either misdiagnosing yourself or being misdiagnosed by someone else with autism.
If You’re Not Really Autistic, But the Label Benefits You, Does It Really Matter?
So I’m labelled autistic twice over in a sense, self diagnosed and officially diagnosed. Does this mean there is a 100% chance that I’m autistic? No. There is no way to say it with 100% accuracy. However, having the designation of autistic has benefitied me greatly. I feel that I finally found my true self, as opposed to having the person I truly am buried under decades of shame. Realising I’m autistic helped me to sing (literally, not just figuratively, here’s a post I did on that):
Explaining to people about autism gives me great joy and a new sense of purpose in my life. Since I realized I was autistic, I became less emotionally repressed. It allows me to connect even more with other people, both autistic and non autistic. And if it were to ever turn out I’m not really a member of the autistic community, I am still happy about the fact that in some tiny way, by trying to help people understand autism, I have helped those that are part of the autistic community. So the fact that I can never have a 100% answer to the question as to whether or not I’m autistic, is not something that worries me, and that says a lot because everything worries me. We don’t have the technology to recognize autism in the brain, it’s not like being bald where we can just say, “Look, that guy is bald.” (I’m bald so it’s okay for me to make hairist jokes.) So, given the fact that it is impossible to definitively answer the question of whether a person is autistic or not, perhaps the only way to answer that question in any meaningful way, is to simply answer whether labelling them as autistic makes them a happier person who lives a much fuller life. Because otherwise you are only four or five steps away from asking, “What if our world is just a simulation?”, and life’s too short for that sort of carry on.
Ponderings Of An Autist 