What is neurodiversity?

There are many misconceptions about what neurodiversity means and how it affects autistic people, so I just want to quickly clear things up.

The pure and simple meaning of neurodiversity is that diversity in human brains is natural, and so┬áconditions such as autism, ADHD, dyslexia and others are naturally occurring and not the result of a neurotypical brain being injured or altered in some way. Neurodivergent people are not broken versions of neurotypical people. That’s literally it. It’s not complicated.

Neurodiversity does NOT mean that people who need support should not get it.

Neurodiversity does NOT mean that “lower functioning” people are left behind.

Neurodiversity does NOT mean that autism is always great and amazing and 100% rainbows and unicorns and we’re never allowed to talk about the bad stuff.

ALL PEOPLE, regardless of what they can do or what help they need, deserve support, dignity, autonomy and respect. Neurodiversity is not at odds with this.

If you want to read something more in-depth written by someone who knows a lot more than me, then please check out Nick Walker’s thoughts on neurodiversity. If you prefer video to large blocks of text then please see Amythest Schaber’s video on neurodiversity.

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Happy Autistic Pride Day!

Yay yay, it’s Autistic Pride Day! Every June 18th, autistic people around the world celebrate a day that is just for us. By autistic, for autistics. There’s a grassroots movement of autistic people that organise local events for autistic people to all get together and just be in one place. There’s no pressure to socialise if you don’t want to, all these events are planned by autistic people to meet our needs.

This year in the UK the number of Autistic Pride events has more than doubled, and I hope next year we’ll see even more. I even organised my first Autistic Pride event this year and it went really well. We had a lovely mix of autistic adults and parents who brought their autistic children, and everyone chatted to each other and got along and it was a happy event. THIS IS WHAT I WANT TO SEE MORE OF; everybody working together to make our local community a happier, more supportive place for autistic people of all ages.

I made some new autistic friends, met some online autistic friends that are real people and not just in the computer, and plenty of families turned up with their autistic kids. It was fabulous to meet so many parents who totally get it, and the next generation of autistic kids who were brilliant and funny and happy and make me so optimistic for the future. I’m proud of what I organised and it was worth it even though I feel like I’ve been run over by a truck right now.

Unfortunately this year some charities have jumped on the bandwagon without really understanding what Autistic Pride is all about. Events that are not organised by autistic people and don’t centre the needs of autistic people are NOT Autistic Pride events. They are awareness events and belong in April. You guys literally have a whole month to yourselves; don’t be nicking our one day.

Also if you are pushing harmful, compliance-based therapies like ABA, don’t you DARE co-opt Autistic Pride Day to promote your own charity and events. DON’T DO IT. That’s not what Autistic Pride is about at all. Just bloody stop. Fucking hell.

Anyway, despite that dark moment I feel like every year the Autistic community grows not just in numbers but in strength and confidence and enthusiasm. We’re really making progress in getting ourselves heard. Well done to you all for doing whatever you’ve done, whether it’s organising an event or just sharing it on social media.

We should be proud.

Accepting my limitations

I’m in my living room trying to ignore the massive piles of laundry, half-unpacked suitcases, tired and cranky children, bored dog who wants to go for a long walk but I’m too tired, and otherwise general chaos.

Yes, it’s that just-got-back-from-holiday feeling. I’m not a great traveller. I like seeing new and interesting places, but the process of getting there and settling in is awful. And now that I’m back, I don’t have the fun visiting-interesting-places bit to look forward to; it’s just laundry and getting back to my usual routine.

After a lifetime of beating myself up about it, I’ve accepted that my executive functioning is a bit shit and that keeping the house tidy is really difficult for me (made even more difficult by my children who have the same issues- but at least I know why and I hope they won’t grow up feeling bad about it like I did). It’s one of the things- along with being assertive, making phonecalls, and going shopping- that I know I’m not good at, and that’s OK.

The other thing I’ve been doing since I got back is catching up with all my activist friends on social media. Some of them are doing incredible things and it’s made me feel like a bit of a slacker. I want to be able to do amazing things too. I want to change the world. I want to write a book and organise protests and talk to the press and give speeches. I want to do my part and stand with my autistic siblings.

What’s stopping me? I wonder how will I ever do those things if I can’t even tidy my own living room?

Should I just accept this as another limitation? Who even decides what my limitations are; is it me or someone else?

Maybe it’s not the fact that I can’t do these things that’s holding me back. Maybe it’s just my lack of confidence. I’m not good at self-promotion. I’m constantly wondering, am I being too cocky by posting links to my blog?

If it is lack of confidence then maybe this is why I’m still dreaming of these things. Maybe deep down I know that the only thing stopping me is fear.

I can accept all kinds of limitations, but lack of confidence is not one of them. I feel like that’s something I can really change. Slowly but surely.

What I learnt blogging every day in Autism Awareness Month

Well, this is it; the last day of my blogging marathon for April! It’s been really fun, stressful, educational, frustrating and lots of other things. But I’m SO glad I did it. Here’s what I’ve learnt:

There are loads of really talented, wonderful autistic activists out there
Some on Twitter, some on Facebook, some on WordPress and Blogger. There are hundreds of you all around the world and you are all doing your utmost to improve life for autistic people. Thank you all so much, you’re all fantastic.
If you want to check out some more autistic blogs, search for the #ActuallyAutistic tag (but please don’t use this tag if you’re not autistic)

I have amazing friends
Thank you to all my friends, new and old. Your encouragement has meant so much, especially in this last week when I’ve been so tired and stressed. My old friends have been right there with me cheering me along, and I’ve made some fabulous new friends too. A huge thank you especially to my lovely husband who has put up with me being glued to my phone (even more than usual).

The Autistic community is just fucking beautiful
You lovely people…. I get all teary just thinking about it. I’ve never felt so welcome and so at home. I don’t know where I’d be without you.

People who are not autistic have enjoyed my blog
One of my aims this month was to reach people outside the Autistic community, and I have had some lovely comments from parents of autistic children, professionals who work with autistic people, and also from people with no connection to autism. I’m so pleased that my writing is getting out there and maybe introducing some new ideas to people.

I have a stress limit and I went beyond it about 3 days ago
My eye has been twitching for days and I had a horrible migraine yesterday. I was getting serious writer’s block towards the end. April could do with being about 5 days shorter. I’m in dire need of a bit of self-care.

The future for autistic people is looking brighter all the time
I don’t know if it’s me, but I’ve noticed a lot more acceptance this April. It seems like the idea of neurodiversity is becoming more and more accepted. Sure there are still people trying to cure autism, sometimes with harmful “remedies”, but it feels like overall we are starting to shift in the right direction. There’s this whole atmosphere of inspiration and optimism and I’m excited to be a part of it.

If you do nothing for Autism Awareness Month then that’s OK

I’ve asked people if they want to join in with my (maybe slightly ambitious) blog every day for #30DaysOfAcceptance thingy. I would love for people to join in. The more info we can spread to stem the tide of bewareness, the better. Everyone who is able can blog, sign, photograph, write poems, whatever you can do to promote the idea of autism acceptance.

But if you’re not able to do anything then that’s OK. If all you can manage in April is turning off the internet and watching your favourite movie 8 times in a row then that’s OK. If you need what little spoons you have for basic self-care like showering and eating then concentrate on that. If you’re not out as autistic and you want to keep it that way then don’t feel like you have to come out to show you’re not ashamed. Do what you need to do to survive.

Don’t feel bad that everyone else is doing something. This is a team effort, everyone does what they can. We’ve got your back. We’re a team even though most of us have never met each other in person.

Also, if you are doing something then please think about how people will receive comments like “We should all be doing something”, or “I’m sick of all the in-fighting, I’m going to tell you the right way to do things” or anything else that tells people how they should be doing their activism in April. It’s a tough time of year and we all need to put our mental health first.

To everyone that’s dreading April, just take care of yourselves. Maybe next year will be better.

Calm the fuck down, there is no autism epidemic

I’m prob a bit late to the party, because I had no wifi for THREE DAYS (I barely survived), but I am still angry about this thing and therefore it is still current and relevant.

Steve Lebsock, the Democrat representative of Colorado House District 34, has put forward a bill that wants the executive director of the department of public health and environment and the governor’s expert emergency epidemic response committee to put their heads together and try and figure out whether or not there is an AUTISM EPIDEMIC (dun dun duuunnnn). They’re going to have a look at 27 years worth of data and if they manage to somehow spot an epidemic, they’re going to declare it and take action to protect public health. You know, in case everyone in Colorado catches it.

SPOILER: They won’t find an autism epidemic. Because there isn’t one.

People have been worrying since autism was first described about the ‘rising numbers’ of autistic children. What could possibly be causing this? A lot of things have been blamed, most famously the MMR vaccine. But it doesn’t take long to figure out why the number of identified autistics has risen.

Over time, the diagnostic criteria for autism have changed. Children that were previously missed met the new criteria and were able to get support. So, more children are being identified, and more adults who were previously missed are also discovering for the first time that there’s an explanation for who they are; autism. I wasn’t spotted as a child and it’s NOT because I wasn’t autistic then. It’s because it was the 80s and people didn’t know much about autism, and because the diagnostic criteria would have excluded me anyway.

There are also many children that previously would have been diagnosed with an intellectual disability. Now, with the expanded criteria and greater knowledge of autism, these children are being given the support and acceptance they need.

And recently some studies have shown that the number of autistic children is stabilising, which kind of ruins the whole scary epidemic idea.

Here’s the thing; an autistic person is autistic regardless of whether or not they have a letter from a psychiatrist. A diagnosis doesn’t make someone autistic. This bit is important so I’m going to underline it so nobody misses it:

A rise in diagnoses is NOT THE SAME THING as a rise in incidence. I don’t know WHY this is difficult to understand, but apparently it seems to escape some people. The rise in the number of identified autistics is really very simple to explain; we know more about autism than we used to.

This kind of panic about an ‘epidemic’ that doesn’t exist actually damages autistic people. Fun fact: The United States department of homeland security defines epidemic as “the rapid spread of disease that affects some or many people in a community or region at the same time”. Autism isn’t a disease and there is no way for it to ‘spread’, unless the autistic people of Colorado are having a loooooot of babies.

Treating autism in the same way as you’d treat a flu epidemic just makes people scared of us.

Treating autism as something that needs to be prevented makes us seem like we’re undesirable.

Treating autism as something that is BAD makes us misunderstood and marginalised.

And these ideas about reducing the number of people identified as autistic? Denying autistic people the right to understand ourselves, to find our community and to get the acceptance we need is A BAD THING. So really, stop complaining about the wooooooo, scary rise in numbers of autistic people and start feeling proud that you live in a time and place where autistic people are able to know and accept themselves.

What is tone policing?

Ever been in an argument on the internet? Of course you bloody have. That’s what the internet is for. That, and funny dog videos. (Yes, I said DOGS. Don’t @ me, cat people.)

If you’ve ever been involved in an argument about discrimination and oppression, you’ve probably seen things getting heated and before too long there’ll be someone tone policing- what do I mean by that?

Well. Usually the argument will be between a group with privilege (be it white privilege, non-disabled privilege, male privilege etc), and a group without privilege (women, POC, LGBTQ+, disabled people etc. These are just examples; privilege is a complex, multi-layered thing). The non-privileged group will be trying to get their voices heard, and the privileged group will more often than not find ways to argue that the non-privileged group is wrong about their oppression. Sometimes they’ll even claim they are ‘just playing the devil’s advocate’ (Nope, you aren’t). And then the second the non-privileged participants get angry, they are suddenly met with, “Calm down. Being rude won’t get you anywhere.”

BANG. There’s the tone police. Telling you that the reason they aren’t listening is because you are using the wrong tone. Not because they don’t want to listen. It is your fault you are not being heard, it’s not their fault for not listening.

The thing is, a lot of people have it in their heads that disabled people are a big fucking tragedy and that all we do is sit around moping and wishing we were ‘cured’. And they don’t want to hear anything that will challenge that view. So they go from “lalalalalala, I’m not listening” to “well, that’s not my experience/you don’t speak for everyone” to “calm down, you won’t get anywhere with that attitude”. They go from shutting you down by invalidating your experience to shutting you down with tone policing. And there is NO space in the middle where they actually listen.

People without privilege are routinely spoken over. We’re ignored and sometimes even erased from many spaces. It’s no wonder we’re pissed off. Don’t tell us we shouldn’t be fucking angry about the way we’re treated.

Personally, I don’t think it makes a great deal of difference WHAT sort of tone we use, just as long as we never shut up. Keep talking, always. We’ll get there in the end.

Kicking the Kyriarchy’s new podcast episode, featuring me, is now available

KTK

[Image description: A drawing of a person, Caz, with short hair, smiling slightly. The picture is captioned http://www.kickingthekyriarchy.org and @kickkyriarchy]


I can properly post about it now that it’s all finished. I am featured on the latest episode of the fabulous intersectional feminism podcast, Kicking the Kyriarchy, talking about neurodiversity. The episode is about disability and also features Frances Ryan of The Guardian, and Michele Daley, one of the co-founders of Sisters of Frida, a disabled women’s collective. (note- doesn’t seem to be up on the website yet, but you can listen to it HERE)

I’ve been listening to this podcast for a while now and I love it. I’ve learnt a lot from all the activists that have been featured on the show. They were not just intelligent and illuminating, but also funny and engaging.

So when I emailed the hosts, Sidonie and Elena, asking if they would considering doing a bit on neurodiversity (I may have included eleventy billion links explaining various issues), I was properly nervous and hesitant when they asked ME if I’d like to be interviewed. On the ACTUAL PHONE.

But I thought, fuck it. How badly could I actually do? And it’s not live, so yay.

I was sent a list of questions and spent a few hours reading up and making notes on what I was going to say. I won’t lie, I lost a fair bit of sleep on the run up to interview day. I’ve never done anything like this before and I wasn’t sure if I’d actually be able to do it. But the interview itself was fine. It probably helped that Sidonie and Elena’s voices were so familiar to me, having listened to the podcast so much already, so that put me at ease a bit. I was also assured that the many ‘ums’ and ‘ers’ and terrified squeaks could be cleverly edited out.

When they sent me the finished edit of my interview, it took me nearly a week to summon up the courage to listen to it. But I was pleasantly surprised that a) my voice didn’t sound as bad as I was expecting and b) I actually sounded like I knew what I was on about in some places.

Sure, there were a couple of places where I think I could have chosen my words more carefully, things that I left out that I should have mentioned, and things that I probably SHOULD have left out. But overall I feel OK about it. I think.

So, if you’re feeling at all hesitant about jumping in and doing something, what I want to say is; if I can do it, anyone can. If you listen to any podcasts that you think might want to talk about neurodiversity, email them and suggest it.

I actually did it, comrades. Hope you enjoy it.

And now for the post-game analysis

Today I did an interview for one of my favourite podcasts. I’ve been listening to it for a long time and learnt a lot from it, so I was pretty excited to be invited on to talk about neurodiversity. I was also completely crapping myself because I’ve never done anything like this and I was convinced I’d be terrible at it.

The interview was over the phone (PHONES, ARGH) but the hosts were lovely and their voices familiar so I tried to feel at ease a little bit. It was all kind of a blur and ever since I hung up the phone I’ve been doing what I like to call the post-game analysis. I believe I’m accurate in saying this is a pretty common autistic thing. All that practice and effort into socialising and you can’t help but pick apart every sentence, every phrase, every word and give yourself a pat on the back for doing well or berate yourself for doing badly. How’d I do, coach?

I was sent the questions in advance so I spent a few hours researching and making notes about what I was going to say. It’s hard because I don’t feel qualified as a white person to talk about autistic POC’s experiences. Neither do I feel as a middle class person that I can talk about poverty and lack of access to health care. So a couple of times I went completely out of my depth and I probably said some very wrong things. I even strayed onto some pretty scary territory (eugenics and Nazis! I mean, why not stick to something easy? FFS) and then back-pedalled furiously. Holy shit, I am so much better in print than in person. At least now I have a backspace.

The podcast won’t be out for a couple of months and I get to hear the edited version before then (if they can get 20 mins of coherent talk about neurodiversity out of my 40 mins of rapid rambling monotone).

Until then I will without doubt spend hours replaying it all in my head and cringing at basically everything. But I would like to thank them for having me on, it was a privilege and might be just what I need to kick my arse into gear a bit.

I’m going to go and hide under the bed now.

I never wanted to be an activist

I’m really no good at debating, like AT ALL. I usually just end up crying, whether it’s going well or not. It’s just too much for me to deal with. That’s the reason I don’t have comments on my blog. I just can’t cope with ANY comments, good or bad.

So every day I ask myself, why am I doing this when I’m clearly not cut out for it?

Well, you got me. I care deeply about injustice and standing up for what’s right. I know that’s a common thing with autistic people. We can’t stand any kind of unfairness. So I keep posting articles on my FB, and emailing my MP, and signing petitions, and I even went on an anti-racism march once (in public! With PEOPLE!!). But I’m scared to step far out of my comfort zone. I’m scared to join in debates that are not on my personal FB page. I’m scared to post very much on Twitter because I’ve seen what happens to other people.

I am too damn scared to be an activist.

BUT I keep finding myself in this cycle of trying to be braver and then retreating. Maybe I’ll be stuck in it forever.

When I first got my assessment for autism, I was told by my assessor that I was a trail-blazer of sorts, being an autistic adult at this time. I don’t want to be a trail-blazer, I told her. Well, you were born at the wrong time then, she replied.

So here I find myself in this crusade for autistic rights, suddenly right in the middle of a battlefield. I’m terrified but I guess I’d better stick my helmet on and learn how to fight.