What does autism feel like?

Good question, and thank you for asking (even if you didn’t ask and just stumbled across this by accident).

In many ways, this is one of those situations where asking the question at all is really more important than trying to absolutely nail down a definitive answer. It is always a wise move to try and put yourself in someone else’s shoes, even if only for a brief time.

And I can only describe what autism feels like for myself – all autistic people are different (like all people!), though there are some commonalities.

But the short(ish) answer for me is this: autism feels like being a stranger in a strange land where nothing really makes sense or is consistent with how you see and think about things. It is waking up every day in a country you have never visited where you don’t know any of the language, customs or norms, and can only figure them out by watching, listening and trying to copy others who do understand that place. You cannot trust any of your natural reactions – think being asked for directions in a country where pointing with your finger is a huge insult! Then, just when you may be getting the hang of things, you wake up the next day in a completely different strange place.

Autism is having to question and consider everything consciously all the time, and it is frustrating and exhausting.

The (even) longer answer is more difficult. Feelings are hard to define. How do you describe what something feels like to you in a way that someone else can understand? We must all feel things in different ways, not least because we are all different people (which is a good thing!). I know for a fact that if brussels sprouts tasted to others as they do to me, nobody in the world would ever eat them again! I call this the Palmer brussels sprout proof of different sensations. Well, I call it that now having just made up the name anyway!

I am no psychologist, but I would suggest that in considering how we view the world, it is almost impossible to start from anywhere other than considering our own view, the one we were born and to an extent raised with, as normal. Setting our personal worldview aside from being a baseline can be done, but is tremendously difficult in my experience.

We all tend to start off our lives with similar views to those who raise us, be it the sports teams we support or the names we give things. By the way, if you ever want to start a huge argument with a group of British people from different areas ask them what the correct name for a bread roll is, and stand back fast!

So to describe what autism feels like is hard because I really have nothing to compare it with – I have always been autistic, as has every other autistic person. This is not the same as asking someone who could see and then lost their sight in an accident or through illness how it now feels to be blind. I have never seen the world as a non-autistic person sees it, so my comparisons have to be based on how I perceive that they see the world.

This argument quickly becomes a bit circular, as one of the major problems with my autism is that I frequently find it impossible to imagine how some people could have been thinking to act the way they do (but maybe that is just a wider issue we all have with some other people!)

You see, I am me, and it is hard to separate my autism from the rest of me. When you eat something, you use your senses of taste, smell, touch and sight to build up an overall picture of that food. It is almost impossible to separate out the pictures from the individual senses.

When I come across something in the world, my autism plays a big part in how I perceive and react to it, but so do many other things – my past experience, my mood, the wider situation, my wider mental health at the time and so on.

Autistic people are complex, as we all are. Autism is not a nice, logical thing that can be pinned down. It is not defined like a physical disease which usually gives you a rash on your stomach and a headache. Autism pervades ever aspect of your life.

But here is a thought on what autism feels like to me that may surprise you. Autism feels terrific. It is a huge part of who I am, and while I get frustrated with myself at times and I don’t like everything I do and say, I am pleased and proud to be me. As far as I can tell, my autism gives me at least as many positives in my life as negatives.

Of course there are times when I wish I could fit in with others better (and this would have been really useful when I was getting bullied at school for being different). There are times when I wish the world made more sense to me naturally without having to really analyse what is going on and apply what seem to me to be deeply illogical and irrational conventions. Why do people say one thing while meaning another and expect you to understand this by the tone they use – why not just say what you mean?

But would I give up the gifts that autism gives me in exchange – no way! I know from experience that seeing things in a completely different way from others and having a mind that keeps coming up with new ideas is a huge asset, even if I wish I could just flick a switch to put my head into sleep mode at 2am!

Autism is a big part of who I am. Being autistic feels like being me, and after 50 years and huge support from a few key people I am finally becoming happy with who I am.

Autistic people often feel different, because the world is not designed for us and the way we think. But aside from that, we feel like ourselves. We have just as much to contribute as anyone else, and our views are just as valid as those of others. If you want to know how an autistic person feels about something, ask them – that happens far too little. But I could no more say in absolute terms how it feels to be autistic than I could say how it feels to be human. I am just me, and I am glad I am.