Diagnosed at 48 I am one of those whom people find it hard to accept as autistic. I find it hard to accept the pressure to feel somehow happy about it. That pressure comes under the form of “now you know, you can better learn to live with it”. At the end of The Bridge season 4, the therapist tells Saga Norèn to finally do “what she wants” now she’s liberated from the doubt and guilt that marked her struggle in life. This is disastrous advise in my opinion, and more disastrous still in the case of autism, and this post tries to say why. It’s a post that runs counter to a certain feeling in autistic circles that you can embrace it and find success in life. It’s not a happy post as I refuse to be recovered by a modern fashion to see everything in the light of success. I believe that is autistic as well and maybe I’ll be able to start to explain why.
I’m doing philosophy. It’s what I (always) want(ed). I’m doing it after a lifetime being, and working as, an engineer, making lots of money. I got exhausted many times and escaped in time a number of times: moving to Madrid, studying cognitive science, writing a book. I always moved back to being a manager because I was happy and wanted my family to be happy. Whether you like it or not, a happy life is also a steady life, one where you do – more or less – as you’re told. The tension however increased, not in the least because the way I did things was my way and people were told I wanted them to do things my way. In the end, after trying to found my own business, failing, and going back to what I always was seen to be – a middle manager – I snapped. The people around me snapped. I got the diagnosis after that as adults need to snap before getting diagnosed, that is just the way it is. To keep the sense in my life I started studying philosophy. It was a story I could spin. It was a tale I could tell. People supported me in it, because, you know, I am a lucky bastard and grateful to death for everything everybody did despite me being a charming monster surviving on intellect and the will to fight.
So I’m doing “what I want” and now, for the first time, I ask myself: hadn’t I better done it a different way?
You may think: what an ungrateful bastard! And if you do, well, it’s what I think as well. I want to want what I wanted but I can’t bring myself to fight for it anymore. It just doesn’t seem to make sense anymore. I live out my difference with this world that felt always so utterly strange to me. I could intuitively understand mathematics but had to calculate my way through every single situation I was presented with. I want to make money so it isn’t just my wife having that on her shoulders. But, somehow, I feel too old to do a new thing, and I am too old to return to my old thing. Autism is not the issue in the latter case, but it is the other chronic illnesses and mainly a degenerative spine condition. People ask me if it can get better – or at least not much worse – and the thing is that in all honesty I always tell them: no, and no. So they see no future with me as I see not future in me albeit we do not see my future for entirely different reasons.
I don’t see a future because I’m tired. It is as simple as that. I tried to do what I want, and I just widened the gap between me and what one is expected to do. Without knowing it – although, I kind of knew because I always warned other against “starting all over” – I did call everybody’s bluff on taking risks in order not to be stuck in a situation which is “not you”. The result is this: they bluffed, I won the bet and what I won is splendid isolation. If you think success can be made following “your own path”, forget it, because making your own path is choosing uncertainty and uncertainty is the enemy of autism, it really is. The type of uncertainty of an employer that does not want you back but also does not want to risk telling you they don’t want you back. The type of uncertainty of doctors telling you it is better to look for something else but not telling you what you have to look for. Then it’s up to you to make your new success which is, in a word, just this: stress.
I can’t create under stress – nobody can, autistic people are just human beings who are in a way more pronounced in certain features of what it is to be human. The only thing that I can do under stress is fight. I’m used to fighting. I’m good at fighting. Fighting is just – as you can imagine – exhausting and being further away from normal than I ever was, it is a lot more exhausting. So exhausting in fact that my power for being happy and for finding a lighter tone is vanishing. I weigh more and more on the people whom I love not now by telling them how I want things done, but by not knowing any longer how to want to do a single thing. So I calculate as I always do and the odds are very much that doing the thing I want will result in destroying whom I want. In a sea of uncertainty it is the only certain thing I seem to be able to come up with.
So, no, I’m not giving up. I’m a fighter but please stop believing people have to what they want. Specifically stop telling that to people who are vulnerable that way, autistic people for instance. Stop showing us success stories of others who overcame or integrated or all that. I’m happy they’re happy – I’m not unhappy, just exhausted – but their happiness is a product of many things (and not in the least of the stress caused on others, others they do love and who do love them back). The truth is that even if you’re strong – as I am – and if you’re lucky – as I am – there’s only so much fight in you; only so much uncertainty you’re able to take on. That’s the reality of life and nobody is helped by denying it.
There’s a limit and for some that limit is reached more quickly then for others. That does not mean we do not enjoy the running. It just means we need you to accept that there is a finish line and that no amount of abstract pep talk can change it, can change us. Some of us need to see the finish line. We fight every single fucking day because we find it worth fighting for. Let us make sure we do not start destroying what we fought for. Understand we want to calculate our end before we calculate everybody around us to their end.