Being #ActuallyAutistic: seven years on

It is seven years since I found out officially I am autistic. I thought it would be a good time to pause and think about it all. 

I’ve learnt a lot and I wish I’d learnt some of it sooner.

The diagnosis

If I knew then what I know now, I would have responded differently to the “diagnosis” process. I am using quotes deliberately because that’s what people call it but you can’t diagnose something that isn’t an illness. And autism isn’t an illness.

This was via the NHS – I got a referral from my GP – but outsourced. I was lucky because it took less than a year. Waiting lists are unbelievable at the moment.

The “Clinical Psychologist” who carried out the assessment was not autistic. They went through a checklist, asking questions that I am now very familiar with.

There was one interview (by video), then an emailed confirmation that I had passed. Then I got a follow-up interview with the same person, also by video (a proprietary system, because Zoom hadn’t been invented yet).

This was when I found out they didn’t actually know much about autism outside of the tick boxes.

I raised the issue of empathy, because I didn’t understand why autistic people were said not to have it. They went to a lot of trouble to explain to me that what I thought was empathy in myself was not really. I’m actually very cross about this, because the "double empathy problem" was identified in 2012 and this was 2018. They had not bothered to keep up with research in the field they were supposed to be an expert in.  

They also warned me not to turn autism into my “special interest". This was bad advice, and also pointless. It makes sense to find out more about a condition that you’ve got and that affects everything in your life. It helps to find other people with the same condition and find out what they have to say about it.

And I have learnt a lot. About myself. About my condition. About my community. 

So yes, if I knew then what I know now I would have challenged all this. Fortunately, I had Twitter.

What happens after your autism diagnosis

Nothing.

There is no after care. After that one follow-up interview I was on my own. With a reading list, which was the last thing I got from them. Fortunately I am the sort of person who likes getting information from books.

It was a useful reading list, and my library had most of the titles in it, but it was quite limited. There are a lot more books by autistic people now, and a lot more from autistic people in the UK, late-diagnosed autistic people and women. Which is all good.

Anyway, I made notes and I’m going to summarise what I thought in another blog post. I’m also going to write about the new books that have come out more recently.

I have found my own way. I have friends who are autistic, and getting to know them gave me the confidence to find out more for myself. I have other friends now who think they may be autistic, and things I’ve written have helped them grow their self-awareness. This makes me happy.

Autism as a special interest

"Special interest" is the rather patronising way to describe how autistic people sometimes get a bit obsessive about certain things.

I have not got obsessive about autism, although I follow some people on social media who have. Some of them have made a career out of autism advocacy. Some of them have written books. Some of them spend a lot of time getting cross about things.

I read a lot of books by autistic people, because that’s my community. I follow some Facebook pages and blogs and people on social media, for the same reason. Because it helps to know it’s not just you.

Sometimes I share this stuff, because it’s interesting or I want people I know to understand how I feel about all this. That’s not the same as being obsessive about autism though. I also share things that are interesting that are about lots of other subjects.

But I do feel a responsibility to raise awareness in my own corner of the world. So I’m open about being autistic and I will write about autism on my business blog or on LinkedIn.   

What it felt like

When I got the official confirmation, I felt:

1. Relief. 
2. Vindication.
3. Surprisingly emotional. 

Then I realised I needed some thinking time. And after a while I realised I also felt this:

Grieving a bit for the person I thought I was. I thought being logical, honest, straightforward were positive parts of my personality, that I could be proud of. Now I was seeing them as parts of my disability and wondering if I could still own them. 

Grieving for the person who didn’t get recognition or help. Like the time I had mutism at grammar school and no-one seemed to think I might need help. Did they just think I was weird? Or “shy”? (Which explained away everything for most of my childhood.)

Angry that I didn’t get help before. But how could I have done? When I was growing up, people didn’t know much about autism, and they didn’t know anything about autism in females.

Torn between thinking that I could use this new self-knowledge to change the things that were problematic about my behaviour, and thinking sod it, this is me, I’ve had enough of pretending. After all, I already knew about the social model of disability. 

I think I still feel those things. But I'm not quite sure, because of alexithymia. 

What’s changed

In Robin Ince’s new book Normally Weird and Weirdly Normal, he writes that he can usually tell when someone has been recently diagnosed because “they have lived their whole life under so much pressure and now they are confidently autistic and confidently themselves.” 

I went to see him talk about his book and when he mentioned this he used the phrase “a new skin”. That felt apt.

It's not always that easy, though. Author Katherine May also found out she was autistic seven years ago. In a Substack post, she writes: “Every seven years, a friend told me yesterday, everything changes.”  For her, it's been a struggle.

For me, it's been somewhere in between. 

What’s changed for me? It’s a cliché but it’s about the value of self-awareness. I’ve found a reason for why I find some things difficult, and I am learning to be kinder to myself. I was always known as someone who speaks my mind but now I’ve learnt to be open about my needs as well as my opinions.

There’s a downside to this, too, because I am more aware of my limitations and more likely to avoid things that might be challenging. I worry sometimes that this might be holding me back, but it hasn’t stopped me doing the things that I really want to do (like publishing a book). 

I haven’t stopped masking, because it’s hard after all these years not to do it. (And it makes daily life easier if I can smile at people and make the right social noises.) But I have stopped trying to conform. 

I’ve found my tribe. Online, in books and in some cases in real life. I have learnt from these people and some have learnt from me. That’s community.

I think things have changed in the wider community too. There seems to be a lot more awareness of autism now in our culture (in the UK anyway; the US is way behind). There’s also more awareness of autism in women. It feels as if we are making progress.

There have been TV programmes like Chris Packham’s Inside Our Autistic Minds or Christine McGuinness’s Unmasking My Autism. Books, as I mentioned before. High profile celebrities talking about being autistic. 

This has been part of a wider openness to the notion of neurodiversity in general. And also a growing focus on accessibility and inclusion.

So, yes, there is a lot more information out there than when I started off thinking about this. And, maybe, more empathy.

BUT.

There is also a lot of misinformation. 

There are still a lot of well-meaning myths around. The notion of “the spectrum” (it’s not what you think). The related idea that “we’re all a bit autistic”. The “superpowers” myth, which is really just toxic positivity. 

And there are a lot of less well-meaning commentators, too. Certain newspapers that routinely run stories about “cures” for autism. Certain wrongdoers who think autism is an excuse for bad behaviour. And certain people who believe that autism is over-diagnosed.

As John Harris commented in this excellent Substack article, neurodiversity is now part of the culture wars. This worries me.  

It feels as if some people want to turn back the clock on the progress we’ve been making. For the past seven years, I’ve started to feel heard, for the first time in my life. I don’t know what the next seven years will bring.

Reading lists

• Autism resources part 1. These are the things I read straight after my diagnosis.
• Autism resources part 2. These are the new things that have been published since then.
• More posts about autism