Why I Wasn’t Diagnosed With Autism Until the Age of 27

When I tell people I was diagnosed with autism at the age of 27, they usually ask why so late. And that’s a good question. It’s not like the signs weren’t there.

I have wondered for a long time whether we could have known sooner. It would have made school so much easier for me and maybe even saved me from some mental health problems I developed.

Looking back, I think the signs were clear. But “looking back” is — per definition — a luxury we only have after an event. What seems perfectly obvious in hindsight was not always so obvious at the time.

I Was Born in the 90s

I was born in 1991. I‘m not happy about it, but that’s more than 30 years ago! A lot of what is known about autism today simply wasn’t back then.

The things that were known mostly applied to boys on the spectrum. In fact, it wasn’t even really a spectrum.

Personally, I had absolutely no clue and neither did my parents. Sure, I was weird and I was sensitive and everything. But like most people back then we had never heard of autism, except for some extreme cases that had been reported in the newspapers. And I certainly didn’t have that.

Which brings us to the next point.

Rain Man

There may be an autistic person out there who is exactly like the guy in Rain Man, I don’t know. But in reality, the vast majority are not. Not everyone with autism has some special talent for numbers or computers or anything, really.

For a long time, this was generally believed to be the case though. The media told us this was what autism looked like so we believed it. The internet wasn’t really around yet, especially not for private use, and googling wasn’t an option.

But I didn’t have any of those talents or even interests. So I would never have guessed that I might actually be autistic.

There Still Aren’t Many Professionals Who Are Up-to-Date

Autism is a spectrum. It doesn’t look the same in any two people. Which is a fact even some “professionals” seem to forget from time to time.

Before I got my diagnosis, I went to one psychologist who fancied herself an “autism specialist”. After some talks and a questionnaire, she told me I should definitely be diagnosed with autism but she won’t do that because I made eye contact with her which “isn’t something autistics can do.”

Ehm…what?

It didn’t seem to occur to her that autism is a spectrum and that many autistic people, especially women, actually make a conscious effort to make eye contact because “that’s what you do in a conversation.” It’s not like its physically impossible for us to make eye contact!

“When you meet one person with Autism, you’ve met one person with Autism” — Dr. Stephen Shore

It took a while after that until I finally did get my diagnosis by a real professional. Prior to this, I was on their waiting list for almost 2 years.

Autism Looks Different in Women

Autistic women, especially those with Asperger’s Syndrome (like me), don’t always show the same signs autistic men do. A number of them are different or not as prominent in women.

Originally, the diagnostic instruments were tailored to men (or to be more precise: boys) on the spectrum, and there still aren’t very good ones for diagnosing women. And because the symptoms are less obvious, a lot of women get their diagnosis very late in life compared to men.

Masking

I think autistic masking is also mostly a female thing. I definitely do it all the time when I’m around people.

I’m highly intelligent, so I learned long ago how to consciously read even micro expressions and I can fake facial expressions. So depending on the people I’m with, I can appear to be a different person. And no one will ever notice I’m autistic or even “not normal.”

Just for clarification, I do also use facial expressions naturally when I’m comfortable and feeling safe. It’s not like I’m a robot or anything 😅

And I don’t use the mask to deceive people! I use it to blend in and to avoid being considered “weird.” It’s a defense mechanism I — like many others — perfected in order to survive in society.

But being able to do it so well made it even harder for me to get diagnosed because the people around me didn’t notice a thing. Only when I started to develop serious mental health problems due to the constant stress of masking (along with some other things), my family began to wonder.

I Suffered in Silence

Most of my life, I didn’t say anything about my symptoms because I didn’t know they were symptoms. If you can call them that. For me, they were just normal.

So I thought it must be the same for other people. Only, they were able to cope with it and live their lives while I wasn’t, which made me feel inadequate and wrong.

Maybe I wasn’t trying hard enough? Or was I being too sensitive? Too lazy? I had no idea.

Until I stumbled upon a blog about the everyday experiences and challenges of the author, who had Asperger’s. And it just hit me. It was as if she was talking about my life.

That’s when I started doing more research on autism, which would eventually lead to my own diagnosis.

Final Thoughts

Even today, it’s still very hard to find a qualified psychiatrist and get a diagnosis. As I mentioned above, professionals who are up-to-date about autism are still rare and as a result, their waiting lists are long. Very long.

But with autism awareness growing, there is hope that in the future it will be easier to get a diagnosis early in life. Which, in my opinion, could lower the rate of mental illnesses among autistics immensely.

Thank you for reading my story! If you liked it and want to read more from me, you can follow me on medium and twitter. You can now also buy me a coffee, if you feel so inclined ☕❤️