When things fall apart

The last week has been fucking awful for me. I’ve been snapping at everyone, losing the ability to speak, forgetting things, losing things, eating crappy food… the list goes on. I’ve started about 4 new blog posts this week and not finished any of them. I can’t focus. What the heck is going on?

I’ve got an analytical mind and I need to figure out the answer to this so I can fix it. One thing I know is that my routine has been messed up. In an uncertain world, I need the certainty of my routine. It makes me feel secure and happy and able to tackle things I otherwise wouldn’t. I’m not one of those people who does things by the clock, but I rely on doing things in the order I expect; get up before everyone else, drink lots of tea, do some yoga, take the dog out. Then get cracking on my day. If those things don’t happen in the morning then my whole day is out of whack and I feel like I’m constantly playing catch up.

Some parts of my daily routine have a knock on effect to the rest of my week. Yesterday was leg day, today is arms day (if you don’t know what this means, it’s a gym term; I am doing weights concentrating on arm muscles today). If I don’t do arms day today then my next leg day will be late, which means my running plans will have to change. All these changes use up valuable spoons. I haven’t written about spoon theory yet, but I will. I’m not going to start yet another bloody blog post to add to the queue now. I need to finish this one.

I’ve had to unexpectedly spend long amounts of time with people I don’t know that well. That’s a huge spoon-sapper. It takes me days to recover from that.

When things don’t go as I expect, it’s like a satnav recalculating a route. It takes time and effort and means that I can’t do other things that I would have been otherwise able to do. Even things like coping with noises or being able to talk or reading a book. Things that non-autistic people might take for granted.

I don’t think non-autistics realise how FUCKING HARD autistic people have to work every day in a world that’s not designed for us. It’s bloody exhausting. Cut us some slack, don’t fuck up our routines without shitloads of notice. Don’t EVER spring things on me. Even nice things. If someone surprised me with a trip somewhere I would love, but I’d planned to do some cleaning then the change in plans would still use up spoons.

Holy fucking hell, I think I actually just finished a blog post. Is it bed time yet?


On Valentine’s Day, a love letter to the Autistic community

When I first had my assessment at an autism charity, one of the things the woman who assessed me said was “go and talk to other autistic people”. I’d never (knowingly) met another autistic adult, so I wasn’t sure what to expect. At this point, nearly everything I’d learned about autism was pathologised stuff aimed at parents. I’d read a couple of blogs but not interacted with any actual autistic people.

So I joined an autistic group on Facebook and it was the beginning of something beautiful. I finally met people like me.

I’ve always been lucky to have family and friends that I’m close to. I always had someone to talk to if I needed it, and I was never lonely in the sense that I was never alone. But you can be surrounded by people and still be lonely if you think you’re the only person like you. And for years, that’s what I thought. I didn’t know why I couldn’t understand things and why I had to put so much more effort into everything. I thought I was the only one.

And then I met you people, the Autistic community.

All of a sudden, I was accepted for who I am. I didn’t feel the need to change my behaviour or words, I didn’t feel the need to try and analyse what I thought people wanted so I could act that way. I could be me.

I’m not really the touchy feely type, I don’t tend to talk about emotions; partly because I struggle to find the right words and partly because it is the most super-awkward thing I can possibly think of. But today I wanted to say thank you to the autistic community. You have been my salvation. You have allowed me to accept myself and to be proud of who I am for the first time.

I fricking love you people. Happy Valentine’s Day.

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.

Autism and impostor syndrome

So you may have read that I DONE A PODCAST INTERVIEW. Yes, I’m shouting. I’m trying to get out of my comfort zone and tell people about it. Scary.

Anyway, after it came out I realised that one of the other guests was a Guardian journo that I’ve been reading for ages, and the other was a badass activist who has done loads of public speaking and founded a disabled women’s collective and tbh sounds amazing. And then there’s me with my like 12 blog followers. And suddenly I felt a HUGE BOUT of terror that I somehow didn’t belong on this podcast. I wobbled to my friends about it, and being the awesome friends they are, they were kind and supportive and said “sounds like Impostor Syndrome.”. This is an actual thing, and here’s what I’ve learned about it.

Impostor Syndrome is the feeling that, deep down, you are a massive fraud who is actually shit at whatever it is you’re doing, and you feel petrified that somehow everyone will find you out and expose you.

So what does that have to do with being autistic?

I guess it stems from low self esteem, which a lot of autistic people have due to being constantly compared to NT standards (we’re not NT, we never will be, so don’t compare us). When you’ve grown up putting so much effort into everything and then STILL being told you’re not good enough, your self esteem is going to end up in tatters.

Also, because a lot of us tend to mask (intentionally or not), it can lead us to feel like we ARE being fakes. Maybe the fact that we can find some social situations hard to read doesn’t help either. All it takes is one seemingly ambiguous comment or an unclear facial expression and I’m thinking, shit, they are on to me!

It is really hard for me to actually believe I am good at something. I’m a bassist, and have been for over 20 years now. But I find it hard to imagine that I’m anything more than slightly above average; if I make no mistakes, it’s luck and if I make mistakes it’s because I haven’t practised enough. And if I remind myself that I’ve been doing this shit for a LONG TIME, the negative voice tells me I ought to be better than I am with the amount of experience I’ve had. Can’t bloody win.

I tell myself all kinds of things other than “you are good at this”. Every conceivable reason why I’m not actually good at the thing. And then I worry that someone will rumble me and I’ll be exposed for the massive liar that I am. Someone will say, you didn’t earn this. You don’t belong here.

So, how do you get over this? I guess building up your self esteem helps. It’s not easy, but doing something scary and then having it go well will probably help. Having supportive friends definitely helps, whether they are in the computer or in ‘real life’ (thank you, friends!). Maybe save some of the best supportive comments you’ve had so you can take a look at them when you’re feeling like a huge fake. And remind yourself of all the work it took to get where you are- it’s not entirely luck, is it?

It’s not exactly a positive, I guess, but you can take comfort in knowing that Impostor Syndrome is actually pretty common, so you are definitely not alone.

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

[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.

What treatments are suitable for autistic people?

Well, I can’t speak for all autistic people, obviously, but I can tell you the best way to treat me to make me feel better. Here are some ideas:

  • Buy me flowers (red alstroemeria are my favourite)
  • Leave me alone for an entire day with my dog and Netflix for company.
  • Cake.
  • Don’t spring last minute plans on me.
  • Babysit my kids so I can go for a run with the dog.
  • Give me lots of time to answer questions.
  • Take me to see a movie (I’m picking the movie).
  • Be quiet while the Formula One is on.
  • Buy me something nice (but ask first because I hate surprises)
  • Don’t assume that I can’t do something or can’t understand something because I’m autistic (this includes EVERYTHING from shopping to being a parent).
  • 3 hours of uninterrupted video games.
  • Give me plenty of time to make decisions.

All of these things make me feel less stressed, and therefore happier. None of them make me ‘less autistic’, but that isn’t a thing so if you’re trying to achieve that you are wrong, stop it.

I hope this gives you some ideas on how to treat autistic people.

Disclaimer: Not all autistic people like these things, so if you find yourself in possession of a lot of cake and alstroemeria then just give it all to me to be on the safe side.

Would I have been better off being diagnosed as a child?

I briefly touched on this in a previous post about the anger surrounding late diagnosis. And I know I said I’d learnt to let it go (the anger), and I have, but I’ve been thinking about the way autistic children are treated and it’s left me wondering whether or not it would have been better or worse being diagnosed as a child.

Growing up being treated as if I were neurotypical did not do my self esteem any good. I was constantly told I was lazy, disorganised, stubborn, rude, and plenty of other things that are not good for a troubled teen to hear. Surely it would have been better if everyone would have known I’m autistic?

Wouldn’t it?

But then I talked to friends that were diagnosed as children and heard what they went through; 20+ hours a week of intensive ABA therapy. EVERYTHING is therapeutic in some way. Every activity has a purpose. Everything they do is monitored and analysed. Kids can’t even go to the loo or play a video game or eat a meal without someone making notes about it.

They are othered to the point where surely they must feel like they’re not even human.

Is that any better for their self esteem? Kids desperately want to fit in. Sure, autistic kids know they are different. I did. But would it have been any better if my difference had been acknowledged to the point where it’s pathologised? Would it have been easier if everyone had talked in hushed tones around me? Talked about me as if I wasn’t there? Would it have been better if I’d thought that I was somehow broken and needed all this therapy so I could be fixed?

Parents are told that unless the children undergo interventions as early as possible, that they won’t be able to live independently. How true is this? Why aren’t autistic people supported to be themselves instead of having to make a Herculean effort to be ‘normal’?

Which is better; thinking you’re useless or thinking you’re neurologically defective? Having PTSD from being badly treated at school or having PTSD from hours of ABA?

At least I had some freedom and some time to be a ‘normal’ teenager (when I wasn’t in detention, that is). So maybe it’s better that I found out later in life that I’m autistic. Now at least I have the autonomy over my identity.

One thing is for sure; we need to change the way autistic children are treated, because neither option is looking that great at the moment.

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.

New Year’s Resolutions

I love New Year. I hate NYE because it’s basically just drunk blokes trying to sexually assault you, but New Year’s Day is awesome. You get a fresh start and everyone is full of hope and enthusiasm and the pure belief that this year is going to be brilliant.

This year I’m making more plans than resolutions. I’ve got some exciting things lined up that I’m fairly sure I can achieve. 2017 has been a good one for me, I’ve achieved more than I ever thought I would, and I’ve been able to do so without getting too stressed. I think a lot of that is because I’ve stopped trying to be NT and started trying to figure out what I really want and what I really can do. Fewer spoons were spent on socialising in real life and saved for things that I value more.

I am going to make one resolution this year, and it’s the same one I’ve made for the last few years; try to be less of an arsehole.

I’m not a deliberately vicious person, but I have been an inconsiderate and clumsy one at times. In the past, I have said and done some things I’m not proud of. Some were because I didn’t know any better, some were because I didn’t even bother to think, and some were because I was more concerned with fitting in than I was about other people’s feelings. Anyway, I was an arsehole. I’m relieved that most of the things I did were before the days when everyone was on social media, so I don’t have to share my shame with the whole world.

So this year, and every year, I am going to try harder to not be that person that says shitty things without thinking. I’ve no doubt that I will fail to be perfect, but I hope I’ll be better than I was in the past.

I will listen and I will learn and I will do better.

I hope your 2018 brings you wonderful things.