Diagnosis Story 10: I wasn’t prepared for being called disabled

Today’s story is from Saskia in Germany. She found her ‘brain family’ online before seeking an official diagnosis.

“When he finally gave me the diagnosis, I felt relieved, but when he started talking about disability, I started crying because I wasn’t prepared for being called disabled.”

One of my special interests is making my own cosmetics. My living room looks like a science lab!

Saskia’s Story:
Hi, my name is Saskia and I grew up in Cologne, Germany. I’m 24 now and I got my diagnosis last year in September. Waiting for an appointment with an autism specialist can take up to a year in Germany, soI knew I might be autistic much earlier.

When I was in my fifth semester of literature studies, I had to write a term paper about a comic book of my choice. So I went to the library with my boyfriend and he pulled a graphic novel out of the bookshelf with a subtitle that said “what it feels like to be different” (It’s called “The world beyond my shadow”, look it up, it’s awesome!). I looked at the book and I had the weird feeling that this might be the answer to all of my questions – and it was. This girl in the comic and I were almost the same – we both didn’t understand the behaviour of other kids at school, we were clumsy, bored by small talk, very analytical and we both felt like everyone had a secret manual about socialising -except for us.

So I started researching about autism on the internet, I became obsessed with the topic and I told my therapist about it. My therapist didn’t take my idea that I might be autistic very serious, because during my therapy, I suspected myself of having various mental diseases. At first, I was afraid that I just “wanted” all those diseases for attention, but that wasn’t the case. The reason for that was simply that I had a strong desire to define myself, because I just knew that there was something in my brain that separated me from the others and that I had to mask my true self in order to fit in.

My therapist didn’t want to help me, so I had to do it myself. On Autism Awareness Day, I went to a lecture about Asperger’s where I met other Aspies I’m still friends with. I call them my “brain family”, they are awesome! They invited me to a discussion group, where I learned about their perspectives that strengthened my idea of being on the spectrum.

On the internet, things were different. At least for some of the people online. Especially on Twitter, some Aspies didn’t want “undiagnosed” Aspies to talk about autism because they believed that they might “spread wrong information” or “destroy the picture people have about autism”. Of course this is rubbish. Diagnosed aspies can talk nonsense as much as undiagnosed aspies. I even think that self-diagnosed aspies often know much more about autism than aspies that were diagnosed in childhood, because their suspicion of having autism makes them research much more. Nevertheless, I let them intimidate me, which led me to seek an official diagnosis.

I had two appointments – one for the questionnaires and one for the conversation with the psychiatrist. At my second appointment, I was so nervous that my brain stopped functioning, which was helpful and not helpful at the same time. Helpful, because it turned out that I can’t compensate when I’m nervous – I can’t look people in the eyes anymore, I take everything literally and I told the doctor that I was happy that I didn’t have to shake his hand. Damn. That was rude. I wouldn’t have said that without being so nervous. My nervousness was not helpful because I couldn’t really talk. I had thoughts about things, but somehow, my brain wasn’t connected to my mouth anymore. The last time I had this, I was a child. The psychiatrist asked me questions I could barely answer, even though I had thought about those things for months. When he finally gave me the diagnosis, I felt relieved, but when he started talking about disability, I started crying because I wasn’t prepared for being called disabled.

I still think that without my nervousness, I wouldn’t have gotten the diagnosis. I compensate so much that people haven’t called me weird for the past three years. But now I know, that my new social skills are not intuitive, but are located in a part of my brain that is all about logic and memory and that shuts off when I experience fear. I hadn’t grown out of autism, I just found a way to work around my weaknesses.
I still believe that self-diagnosis is completely valid. You know about yourself much more than a doctor can ever find out about you in a couple of hours, but if you doubt – even if it’s only a bit – an official diagnosis can stop you from brooding.


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