Autism – where to from here?

Well apparently it isn’t as easy as I had imagined … it’s one thing to say „take it easy“ and another to actually do it … those who have been following my blog, may well be aware of my journey of self-discovery: from finding out that there is something such as high sensitivity (Thanks, Bettina!), through various tests on giftedness and, as it turned out male, Aspergers through to understanding and recognising the female form of autism… (Thanks so much, Charlie!)

So on one side my self awareness brought me relief: It explained so many things that I had struggled with before. But at the same time it was (and still is) a shock: Why hasn’t anyone noticed earlier, and if so, why has no-one ever said anything? It would have saved me so much upset, or at least would have helped me to explain things … and now what do I do?

How to address it and with whom?

The hardest part is how to tell others, because you want them to understand and because you want to generally help to make the subject more accessible. But there, as I have learned, you have to be prepared for some setbacks. Here are just a few examples:

• A visit to the family doctor, with whom I wanted to discuss the issue. Thinking maybe she can give tips on how best to deal with it, or direct me on where to get more information? Instead: „So what do you want me to do about it?“, and „I wonder whether people in Africa have autidm?“ Needless to say that I haven’t felt well cared for there…
• Telling friends and then being told (with the best of intentions but really out of order): „Aw, but we love you anyway.“ – Anyway?
• And then those who say  „Yes, but that doesn’t change anything“ – ugh … yes for you it might not! But have you ever considered what those words do to me and how it makes me feel when I hear that you don’t want to talk about it? How suddenly I get a glimpse of why people with depression, which I do not have so don’t worry, get the feeling that no-one can understand them?

Memory Full

Luckily, there are a few people in my life who see or guess what is going on with me. They also ask, how I’m dealing with it.

My answer: I really don’t know what is happening to me! My memory is full!

Apparently there are very few professionals who are familiar with the autism spectrum, and the official diagnosis process is terribly cumbersome and lengthy. You only expose yourself to that if you need a disability ID because the limitations in „normal“ life have become so huge that you can’t get by on your own anymore.

Those who don’t need this ID can’t really get much more from such a diagnosis than what they already know. That’s why in autidm forums you’ll be dissuaded in trying to get one unless you absolutely need it.

And now?

In the meantime I’ll have to keep on enduring it without explanation, being considered as difficult. For example, by medical personnel. Without mentioning the term „autism spectrum“ as otherwise they might draw the wrong conclusions and I may no longer be involved in treatment decisions or therapy is completely denied. That’s the kind of stories you frequently get to hear when you ask other autistic people about their experiences! Not very encouraging…

Then you get to read complete nonsense about people with autism in mainstream media – even in the broadsheets, but fortunately also articles with the appropriate reply elsewhere! (Thanks @misharrrgh!)

Then you start to remember a thousand situations from the past that can now be explained in a new light. Problems at work, with friends, failed relationships … one aha moment after another! And very few friends who have witnessed those experiences and now share this aha effect with me. (Thanks, Alex!)

Most people just don’t care. And then other autistic people tell you that they have no neurotypical friends left because well, “they just don’t get it”. – But hey, I want to keep mine! 🙁

Reactions

Trying to give others (non-autisric people)  the appropriate „Annette manual“ (update: someone suggested  „information leaflet“ as an alternative) so I don’t get into the now identifiable everyday problems with social situations. Then I get the following reactions:

• Getting no answer and never ever hearing from that person again. (Well, f*** off then!)
• Embarrassed silence or dismissing it and then pretending as if nothing has been said and wondering later why I back off. (I can understand that you are confused, but why can’t you talk to me about it?)
• Hastily drawing conclusions because they have seen it somewhere in a film or they have heard about autism elsewhere – see video below. (It’s perfectly okay if you are not familiar with it, why can’t you admit it? Why don’t you just ask me? I don’t bite!)
• Listening and replying „Thank you for your openness. This helps me to better judge the situation next time.“- And then really acting like it when I address it in a concrete situation that is difficult for me. (Whether they inwardly roll their eyes I don’t know, but I hope they do not… At least this is the best possible response from those who are not quite so close to me, but with whom I interact a lot.)
• Listening interestedly and trying to empathize. Asking questions back. Finding visualisations for it together so that a non-aspie can understand how I feel. (Thomas, you’re the BEST!)

There is a nice video from BBC3 btw. about the standard reactions to autistic people.

Laughing helps

The only thing that remains in the end is probably self irony and making jokes with other aspies (thanks Mia!) and allies.

Talk about it openly

So far I have had very good responses to my articles about my journey of self-discovery. Perhaps there will be some more after this article that will guide me further on my journey? Anyway, thanks to all of you who have accompanied me thus far! You guys rock! ♥

And perhaps someone who feels the same as me might get here via a search engine or sharing and then at least feel a little more understood when reading my thoughts?

This text is a translation of this article.
Thanks a lot for helping me with it, Charlie! ♥