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.”
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.
Aspergers From The Inside 
Very insightful story!
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Reblogged this on Laina's Collection and commented:
Yep, I agree 👏 That concept threw me for a loop, too, and after flirting with it briefly I ultimately rejected it in part. I’ll go as far as to say “social disability”, but for me, that’s it 💜💙
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I really like this telling of your experience. So glad you found your brain family and had supportive people on your side. And I especially found your thoughts on diagnosis very helpful because it seems you worried about many of the same things I am currently worrying about and found them to be unfounded/untrue/manageable.
Everything below is my experience and a snap shot as to where along the path I currently am, since I need to record them but don’t want to write my own blog and I won’t remember them for my therapy appointments otherwise.
I am in my late 20s and just starting to unravel this whole ASD thing about myself and it’s been a rollercoaster to say the least. One of my frustrations initially has been that it felt like it explained everything about me, like there was nothing to me but ASD which explained all my experiences and traits, it felt like I was losing grip of my agency of who I am. Like every so often I’d think about a childhood memory which all of a sudden made sense – speech delay: check, having my running skills compared to Charlie Chaplin: check, being socially awkward to the point of incompetence: check, breezing through the German school system: check, having super-fast memory access: check, practicing conversations with myself:check, having an easy time with accents:check, …
It reminded me of my young adult self being at odds with who he was because he could practically pretend to be anyone, so who was I when I was alone? I’m coming to terms with the fact that I have like everyone else, learned and built skills and they make me who I am. I own these skills, they were hard-fought. When something bugged me about myself, I have always sought to gain agency in order to change/manage that aspect of myself.
I have reverse engineered the secret social manual or at least found a loop-hole in the instructions that allows me to exist in my niche in social spaces. I think this has in part also been a strength of mine – because I am known to speak in such a disaffected/analytical tone about my own emotions/ experiences, people tend to trust me with theirs. They do so because they know I won’t judge them, at most I could help them be a wall to bounce their own thoughts and feelings off of and we could stew together.
But I also have my limitations – when I am cooking for example, I can for the life of me not have someone else messing about in the same space. It stresses me out to no end that I have to account for an additional living, breathing variable in my kitchen, and for the life of me I cannot get over it. I always thought that was just a regular weakness of mine, like anyone has weaknesses. And it turns out it is one, just that it is rooted by a life-defining mental difference. There are so many other examples of my inflexibility but they also result in my inane endurance in the face of frustration and failure which my pursuit of a doctorate has had plenty of.
Because it’s sometimes hard to read others’ micro-desires (i.e. when choosing a movie, or a place to go for food, or when a higher-up sends you an e-mail and you don’t know what to address them as), I have over the years implemented a policy of “selfishness when in doubt”, which mitigates endless guessing. In case the other person(s) felt really strongly about their choice after all, they’ll usually make themselves heard, and if they don’t care that much, I get what I had a minor preference for, which also ain’t bad.
Finally, the unusually strong sensitivities I have were always something I was aware of but only in my twenties did I really start to address them. This was because they directly impacted my productivity which I had to uphold in order to stay afloat. I now know I always need to bring various levels of clothing if I want to work because the slightest temperature difference can make it impossible for me to focus. I know I have to eat at very regular intervals, I know I need almost exactly 8 hours of sleep, or else my ability to focus on my work will plummet. These sensitivities and others (like the complete inability to sleep next to someone else) have been challenging in romantic (!) relationships in the past, but I realized fairly quickly that there was no point in stretching myself thin for someone else. And with each failed relationship I learned more about myself, my limits and my preferences.
I am lucky that in my line of work, social interactions aren’t quite so frequent and I get to do most of my work on my own, in my own world, at my own pace and at the end of the day only my results matter.
I am endlessly lucky to have my significant other and my very close friends be so patient with me and love me for all that I am. I would not have gotten this far without them, and every ounce of my (apparently also aspie-related) loyalty has been repaid tenfold.
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