April is over and normal service is unfortunately resumed

I always start April with a sense that I’m about to go into battle. I feel fired up and enthusiastic, but I know it won’t be easy.

The first week of April is always the busiest and every year I have seen an increase in the number of parents and organisations sharing positive information about autism. More people are starting to get it. Parents are looking to autistic adults for ideas on how they can support their children and it’s BRILLIANT. I felt like we were finally getting somewhere.

And then the first week of April ended. A lot of people stopped their acceptance drive and we were left with the doom-and-gloom brigade once again saying how awful being autistic is and how we don’t understand what it’s like and how they wish every day for an autism cure.

Having people listen to us and fight our corner is an amazing feeling, and so many people did such a wonderful job of trying to change the tragedy narrative around autism. But we need it year-round, not just in the first week of April.

Please keep sharing positive information.

Please keep listening to the Autistic community.

Please keep amplifying our voices.

We are making progress, but we need you on board. We need your support.

Thank you.

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It’s World Autism Awareness Day; what do autistic people actually need?


Awareness is a bit vague, isn’t it? Like, most people know autism exists. But it’s still very much misunderstood by the majority of people. Charities and autism organisations often dole out facts and statistics about autism at this time of year. It’s all very well learning facts about autism; we process things differently, we might not pick up on social clues etc etc. But we don’t want people to just learn facts that may not even apply to us (we’re all different, after all).

What we really need is acceptance. I’m going to be brief, partly because I’m on holiday and partly because there’s already a whole shit-ton of things to read on World Autism Awareness Day. But this is basically what autistic people want when we say we need acceptance:

Understanding

We’re not neurotypical and we never will be. Please understand that trying to make us appear “normal” is exhausting and only superficially successful. We need people to understand and accept that we’re autistic and stop trying to change who we are.

Support and accommodation

Many more of us would love to be in school or work but there’s not the support available to help us. There’s no shame in needing extra support so please don’t make us feel like an inconvenience or a burden for asking.

Positivity

We’re autistic, we’re not dying. Please stop with the talk about an epidemic and please stop pathologising everything we do. It’s depressing AF to be around people who treat you like you’re a massive tragedy. We just want to have a happy life like everyone else.

Recognition

Please centre autistic voices, not just on World Autism Awareness Day/Week/Month, but whenever there is an issue involving autistic people that needs discussing. We’re pretty fed up of being left out of the conversation and we certainly don’t want the next generation growing up to feel the same way; ignored and voiceless.

There are plenty of really awesome autistic people that are well aware of the issues we face and have tons of brilliant ideas about how we can improve things for autistic people of all ages and abilities. If you’re ever stuck then try using the tag #AskingAutistics on twitter.

Nothing ever changes but the shoes

I have about 12 half-written blog posts explaining why I disappeared for so long. It’s been hard to get down into words because I am just so overwhelmed lately. Am I better? No, not really. I am still stressed. Having a break helped for a bit but I missed all my autistic friends. Anyway, I can’t take a break forever (and I realise I’m privileged AF to be able to take one in the first place). Sometimes I feel like all I do is wait for life to get easier. But it doesn’t.

And the hard truth is, maybe it won’t.

Maybe it won’t get easier. Maybe things won’t get better for autistic people in my lifetime. Maybe I will always struggle. It’s not a happy thought, but there it is.

So I decided to get on Twitter a bit more often and rejoin some Autistic FB groups. And one of the first big things to happen is sodding #puppetgate.

I’m not going to write loads about it, partly because other people have already done such a good job (check out my good friend Autistic On Wheels) and partly because there is nothing new about this situation. Despite the playwright claiming this is a fresh angle, it’s the same old shit; a parent-focussed story with a “severely” autistic child who is more of a plot device than a fully-formed character (in this case the child is an actual prop, FFS). And of course the objections from the Autistic community are ignored. Again. AGAIN. This is not new or exciting or original, it’s the same shit we put up with day after day, year after year. It’s relentless and it’s soul destroying and I’m so fucking BORED of it.

But I have to keep getting up and getting on because it’s not going to just stop. What choice do we have but to keep going?

So here I go again, getting back into the activism that I’m not good at and I never wanted to do, until the next time I burn out.

And to the Autistic community; I missed you wonderful lot. I’m glad to be back.

Being an autistic parent of autistic children is hard

I’m a bit drunk and I’m mad as hell but today I found a reason to write another blog post after 5 months of wondering why the fuck I was doing this.

Today I had a bad day. Today we were rejected from a group after my child had a meltdown.

Now, as an autistic adult I am WELL used to rejection. I’ve experienced it over and over and over again and I’ve become resigned to it. People don’t like me and I don’t know why; that’s basically the tagline to my life. I haven’t accepted it and I don’t think I ever will. I’m not a bad or evil person, just a deeply unpopular one. I’m resigned to it. I have pretty much moved on. Until now.

There are many difficult things about being an autistic parent to an autistic child.

Like, people don’t realise you exist.

Or people think you can’t be an adequate parent because you’re autistic.

Or people think you shouldn’t have kids in case they turn out to be autistic too.

Or parent groups are full of parents saying how terrible autism is and they wish their child was ‘normal’ and you have to sit there and try not to cry.

But the absolute WORST thing about being an autistic parent to an autistic child is having to watch them deal with the same bullshit you did and not being able to do a DAMN thing about it.

I can’t explain to my child why other people pick on her. She’s not a bad person. She’s a stickler for the rules and hates to see any kind of injustice. She makes weird references to obscure fantasy books that few other kids have read. But she’s not a nasty child. What do I tell her when another kid is mean to her and their parent does nothing? I have no idea how to deal with this shit other than to withdraw from those sort of people. Bad shit happens and people get away with it; that’s the reality of the world and I hate that my child has to learn that.

The reason I started this blog was that I wanted to make life better for autistic people, including my own children. I don’t know how to do that and I’m certainly not cut out for this activist shit, but I think my children need to see that I’m doing SOMETHING. I just wish I could figure it out.

Actually, autism DOES define me

I’m still recovering from a very busy few weeks but I wanted to get this down while it’s still Autistic Pride season.

I often hear people say “autism doesn’t define you”, and sometimes I hear autistic people say it themselves. Yes, you’re autistic, they say. But there’s MORE to you than that.

Sure there is. I’m also a parent and a musician and a gardener and many other things. But the WHOLE TIME I’m doing these other things, I’m autistic. I’m not autistic ONLY when I’m stimming or when I’m experiencing sensory overload or when I’m having a meltdown. I’m also autistic when I’m noticing the small, beautiful things in my garden and when I’m nailing some really awesome vocal harmonies.

That’s not what people see, though. They only see the autism when I’m having a meltdown or taking longer to process something in a conversation. But just because they are focussed on the negatives, it doesn’t mean that autism isn’t always there. It is, every second of every day. I’ve been autistic from the day I was born; every single thing I’ve EVER done, every experience, every emotion, every mistake, every triumph. EVERYTHING. It’s all been processed by my autistic brain. I probably even sleep autisticly. How can autism NOT define me?

I’m autistic ALL THE TIME, not just when something bad is happening.

Because that’s what people are really saying when they say “autism doesn’t define you”; they are saying “autism is bad and you’re not a bad person”. I know they mean well when they say it, but they’re wrong. I agree that I’m not a bad person. I’m an autistic one. That doesn’t make me good or bad, it just makes me autistic.

No one ever says “being a bass player doesn’t define you”. I wonder why that is?

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.

Under pressure

I used to have another blog ages ago about gardening. I used to love posting photos and updates about what I was growing and what meals I was cooking with all the veg I grew.

But I started getting sucked into all the blogger advice about getting more clicks, more likes, more followers, more everything. It stopped being about gardening and started being about popularity. I was also intimidated by the number of better designed blogs written by people who knew more about gardening than I did. It stopped being fun and became a massive chore.

I don’t think this blog will go the same way, because part of the point of it is to get my thoughts out there so that people who feel the same way don’t feel alone. Even if it’s just one person, they might read something that makes them feel better and then my job is done.

But still, I feel a bit of pressure at the moment. I made a joke on Twitter the other day about a phonecall I had to make to my bank. The next morning I woke up to find that I had 137 new notifications about it (I have since played around with the settings so I don’t get notifications for likes any more).

I also got quite a few new followers and I started to get worried that they might expect me to be funny on a regular basis. To be honest, if I remember to tweet something at all then it’s been a good day. Being funny as well is probably not going to happen that often.

When I think about it, this type of thought pattern seems to happen in all areas of my life. If I do something well then I have a brief moment of feeling good, and then a long period of “shit, how am I going to top that?”. Why do I feel like I have to improve on every single thing I do? I’m pretty sure these expectations are internal rather than external. I certainly don’t expect other people to exceed their highest standards all the time so I don’t know why I think I should.

Obviously I need to be easier on myself, but then I end up berating myself for not cutting myself a bit of slack. I can’t even go easy on myself about going easy on myself, which is ironic but probably not funny enough for 400 likes on Twitter. Oh well.

In-fighting in the Autistic community

Many of my autistic friends have been talking about this lately and I have a lot of thoughts about it, so here they are.

Yes, fighting within the Autistic community seems to be happening a lot.

Autistic people are not a monolith. We are a wide variety of different people. We all want an easier life, but that’s probably the only thing we can agree on.

Another thing to consider is that nearly all autistic people are carrying the effects of some kind of trauma and that affects the way we communicate. We’re more likely to be hurt by blunt comments, and we’re also more likely to lash out if we feel under attack. This means that debates about sensitive subjects can be difficult. It easy to say things like “walk away if you are getting upset” but when you’re emotional or having a meltdown, we all know that doing these things is not always easy.

We might not always agree on whether or not functioning labels are bad, whether IFL or PFL is better, or any number of other things. I’m not going to suggest we should just put aside our differences and try to all get along. We are humans, and it’s human nature to disagree on things.

But there are some things I will NOT stand for, things that are NOT a difference of opinion, and that’s bigotry and aggression. I have seen waaaaay too many comments that are racist, homophobic, transphobic and/or misogynistic in autistic groups. And yes, ableist comments too. I’ve also seen some prolonged and aggressive personal attacks and threats. The Autistic community is meant to be for ALL autistic people. Autistic safe spaces should be just that, and some of them at the moment just aren’t.

There’s no easy way to solve this so I got no words of wisdom. Let’s just try not to be arseholes to each other.

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.

No, there is no “autism wave”

I’ve posted before about why there is no autism epidemic. That was only a few months back but nothing has changed; there’s still no epidemic or wave. The prevelance of autism is still not the same thing as the the number of people diagnosed. But still the media insists on publishing these scare stories. 

Here’s today’s effort from the Belfast Telegraph, about a so-called “autism wave” swamping the school system.

I guess stories like this generate a lot of clicks. But they also generate a lot of fear. People are genuinely scared that their child will be stolen away and replaced with a terrifying autistic monster who will suck all the joy out of their lives. People are scared that the number of autistic people will reach such a high level that all government funds will be diverted towards taking care of them and other services will suffer. This autism wave must be stopped at all costs!!

Terrfying, right? It’s like something from a scary movie. And like a scary movie, it’s total fiction. 

THERE IS NO AUTISM WAVE.

The only “autism wave” is the Autistic community trying to catch your attention so you will stop posting bullshit stories like this. Making people scared of us is isolating us and even putting us in danger. Just fucking stop, OK? We just need acceptance and support. Don’t throw us under the bus for the sake of a sensationalised story.