At times, I am overly verbal which is not good for me. I have learned to put my best foot forward and come across well. After all, one should not make a fool of oneself and hurt others.
We are taught to overcome limitations and suppress intuitive reactions in various forms of education. And if we fail at that, then through the help of professionals.
And if they fail, then soon through peers who call themselves “experts by experience”, follow training with a diploma, claim a title, and gladly put on the coat of a little helper to play with “peers”.
Luckily, there are also peers who just want to share experiences and are active in society in their own way (without implying paid work).
So, at times, I hold back my words. I try to walk on tiptoes among the masses. And I am cautious of the reaction to any inappropriate sound or strange body movement that I may make. Out of fear of reactions to context-inappropriate behavior, I force myself to act as appropriately and context-conform as possible. For this, I pay attention, after long analysis, to my posture, hygiene, words, and voice (rhythm, intonation, and timbre). A lot of energy goes into trying to do well.
Contrary to what others may think, I do not do this for my pleasure. Nor out of masochistic tendencies. Nor to please or have a hidden agenda or to get my own way.
It is more out of fear of the consequences in contact with people who live in a different world and who view everything outside of their world as strange, disturbed and ‘idiotic’. Although they themselves will claim to relativize the ‘normal’ at all costs. And often want to come across as progressive as possible, with high-flown discourse analyses or just earthy ‘we are normal people’ philosophies.
To protect myself, I try in those moments to be as not myself as possible. It’s difficult, it hurts, it causes unbearable stress, it doesn’t make the suffering any less, but it prevents worse.
Yet appreciation for this is often hard to find. Above my head, the knife is passed on the operating table and the surgeon makes jokes about ‘all those idiots who call themselves autistic but are actually lazy asses’.
And although a recognized diagnosis from a multidisciplinary team has been available for a long time, copied multiple times and sent to all services in the country (so to speak), in reports, sometimes unsolicited, is creatively handled with diagnoses, without ever having seen me. Occasionally, my GP also asks me ‘if I still have autism’. Occasionally, I feel like saying: ‘between November 5th and 10th, I was not autistic, doctor, but otherwise I was’.
Or at an intake at a center for job coaching, which has just won a prize as ‘most tolerant mental health service’, the intake worker does not want to write it down when I say I have autism. She says: you must have got that from the internet? After some persuasion, she writes: ‘autistic-like personality disorder’ down. If I object (I can read mirror writing), she suddenly gets very angry (or that’s what I think). When I ask her why, she says: you must not make fun of those poor autistics, it is time to abolish the status of disability for people like you.
Therefore, when someone tells me that I ‘have a bit of autism’ or ‘don’t look very autistic’ or ‘don’t display really autistic behavior’ or I’m ‘autistic-like’ and this is intended as a compliment, or when someone says that I should give them hope that things will eventually work out for their autistic nephew, it causes me a great deal of pain and sadness.
The claim ‘you don’t look autistic’ is a compliment for very few people. It is always used as an insult, both to people with and without autism, the former fully and the latter ironically. It is also based on a misunderstanding of what autism is (for example, that it concerns people who can’t or find it hard to talk, with or without others).
Such a statement also stereotypes not only autistic people but also minimizes the efforts that someone with autism makes to fit in with other people. It goes beyond hard work. Yet something that is supposedly praised in our society. And those who say that, in fact, also glorify the pain of the hidden life. Until you break. Completely unexpected and unjustified, because ‘there was everything to be happy’?
Such a statement is of course the right moment to teach these people something (if you have the courage to do so). Unfortunately, the people who say such things have too little openness, so it may not achieve much. Some people simply listen to what comes from outside their experience, others do not.
I would much rather not have to hold back, walk in my own way, move my body without worrying or feeling unsafe, never having to make eye contact… just because that’s who I am. Not just by chance or in addition to everything else, not extra named, but completely me. Like everyone who is allowed to be themselves.
The European Autist 