Autism ADHD and so much more.

I’d like to talk to you about realising that I am autistic. My autiphany if you like. And just to add a small trigger warning here. Not all of this will be jolly because I want to be honest. I’d be disingenuous if I pretended that initially I was pleased. In fact, I was probably horrified and in disbelief. I wrote a piece about not wanting to have this thing and received many comments from women who felt the same but said they were afraid to speak out for fear of being criticised, or ostracised or worse, from other autistic people.

I now realise two things. One, is that I think the negative reaction comes because we mainly only know negative things about autism. That’s a massive problem and is one I am trying to do something about. If the words are all negative and based on deficits then naturally the prognosis feels less than fantastic. The other thing that I now realise is that everyone has the right to feel sad or distressed and it shouldn’t be seen as offensive to someone else – unless they are deliberately being offensive of course. What I mean is this. If someone feels that their life is unbearable and they relate that to their autism, then they may wish that they were not autistic, they may even wish not to exist. This doesn’t mean that they want me not to exist, that’s not the way I hear it. I just hear someone suffering and in pain.

As the marvellous Dr Luke Beardon says ‘autism is not a tragedy, but a society that doesn’t understand it certainly can be’. Until autism is understood for what it really is, many people may struggle. A glance at Facebook closed groups certainly highlights that many people are lonely and isolated and struggling. But I don’t think that it is because of our autism. I now realise it is because I didn’t understand autism and that I live in a society that thinks it does. When it absolutely doesn’t. Let’s be honest, if most of us don’t know all of the things that affect us, how on earth can anyone else?

So back to my autiphany and the question I am often asked is how come I didn’t know before. Well that’s easy isn’t it. I only knew the terrible untrue and unkind stereotypes. People lacking emotion and eye contact. People obsessed with routines unable to socialise. And all of the other rubbish.

Also, I thought that all people were the same and wanted the same things. And my kids now laugh when I say this but I’m afraid it’s the truth. I thought that everyone valued honesty and speaking your mind, I thought that everyone wanted to skip and clap with exuberance, I thought that everyone aspired to dive into conversation with everyone and anyone asking tons of questions and never bothering with boring small talk. I thought that I was just better at it. I honestly thought that my way was everyone’s way but that I was just more confident and capable. Golly that does sound amazingly arrogant, doesn’t it?

So when I had my autiphany and everything that I thought about everything collapsed, I asked people why no-one told me that there are underlying rules and systems and that I seemed to be breaking them. They told me that they always thought I just like defying everything and breaking the rules. For over 50 years I had believed that I was trying so hard to fit in and conform. But it’s ok, cos I now I know that I should have been proud to fit out. And now I am. But it has taken me 2 years to realise that being autistic is just a different way of processing and feeling and seeing and hearing the world. Totally different but totally equal. Equal but different ; different but equal.

It was suggested to me that I research autism in women and I was astounded, shocked and offended. Me? That was ridiculous, impossible. But of course, because I am indeed autistic, I read and researched and read and researched and then guess what I did? Also, and really this should be enough for the diagnosis, I decided to think about being me and sat down and wrote 54000 words in a week. Can’t everyone do that??

I had very few memories of anything really but I was sure that I was fun and popular and well liked and accepted. I couldn’t remember any examples of this but nevertheless I was sure it was so. And then my amazing autistic brain shouted at me to stop. I was out walking and it said these are the wrong memories. And they were. In that moment I remembered that I was bullied and excluded and mocked. Being silly and funny meant I was sometimes tolerated as an oddity and being clever meant I was successful in class, especially because my school was rough and ready and the teachers were no doubt relieved that someone turned up at all. Autistic super skill – no succumbing to peer pressure. But I will do a separate piece about that.

And then my autiphany was complete as my brain took me back to a drama competition, which obviously I won, and all of the words of the monologue were there. Suddenly I knew them, and suddenly I knew why I won. I wasn’t acting. I found the monologue on YouTube and cried for 3 days. I cried for that little girl who wanted to be liked and who didn’t understand what she had done that was wrong or bad.

The character is talking to her toy. She asks over and over why she doesn’t fit in and why she gets everything wrong and why she is like she is. She doesn’t want to exist, she thinks that she must belong somewhere else. She sounds desperate and lonely and confused. I remembered her. And in my autiphany I knew that she was still here and still feeling exactly the same.

But autism changed all of that. Autism has shown me who I really am and why. I am different but that’s ok. Even better than ok, knowing my differences means I don’t have to try and be something I am not anymore. I am different but equal. Of course it is still a struggle in a society that doesn’t understand autism as it really is, or worse thinks that it does, but leave that with me because I want to change all of that.