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?

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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.

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. 

Review: Autism: How to raise a happy autistic child

Every morning, I sit down with my coffee and read the news. On this particular day, I spotted a Guardian article about a mother who had written a book about her experience of raising an autistic son. After the twin shitstorms of To Siri With Love and Autism Uncensored, I was feeling pretty defensive about the possibility of another “Autism Warrior Parent” book.
But then I read the article. The author had spoken to autistic adults, realising that we’re an untapped resource of information. This sounded pretty interesting. I took to Twitter to ask if anyone knew anything more about the book. Yes, tweeted the author. Would you like a copy to review? So she very kindly got the publisher to send me a copy and I got cracking.

In the very first paragraph of the introduction, bam, there it is; the author says that the problem of a non-autistic parent raising an autistic child is the difference in communication. Already it’s not described as a deficit. Holy shit, it’s so nice to read stuff like this. She describes how she ditched the first draft partway through after realising that she was approaching this the wrong way, and that interviewing only non-autistic people about autism was a mistake. There are stories and quotes throughout the book, and an entire chapter (“What is it like being autistic?”) in which autistic adults are handed the mic.

The first few chapters are full of information on the basics of autism and the diagnostic process. One sentence jumped out at me, and I think this is SUPER IMPORTANT:

“I can understand why the medical community focuses on not giving false hope at a time when the future is unknowable, but sometimes I think clinicians could worry a bit more about giving false despair.”

This is one of the reasons I always recommend parents of newly diagnosed children talk to autistic adults. The doom and gloom you can get from the medical community is enough to turn even the most level-headed parents to desperation and depression. I’m so glad the author has pointed this out.

There is a whole chapter dedicated to sensory differences! I love this. I feel like it’s often a neglected subject when it comes to non-autistic “experts” talking about autism; too much focus is put on differences in socialising. Explanations on what sensory processing differences are like for autistic people are interspersed with advice and suggestions on how to support an autistic people dealing with sensory overload. Obviously all autistic people are different, but the general points of not talking too much to someone having a meltdown or not preventing an autistic person from stimming are fantastic general advice.

I have to admit, despite all the positive stuff so far I did do a sharp intake of breath when I turned the page to find the next chapter was titled “Interventions”. I was kind of dreading it. This is because of the foreword by Ambitious About Autism, a charity who uses ABA and PBS, both of which are not recommended by the Autistic community. Deep breath, and dig in to the chapter. Within the first few paragraphs, it is emphasised that the aim is to help autistic children, not make them behave as if they are not autistic. So far, so good! The author states there is no perfect intervention and that it’s more important to work with someone you trust. She warns against panicking and choosing therapies based on a fear of what the future might be like for your autistic child.

The next few pages contain info on different types of therapy including music therapy, yoga, Lego therapy, social skills classes and executive functioning classes; but there is no mention at all of PBS or ABA. This seems a bit strange to me, since these are often promoted by autism charities, mainly in the US but increasingly in the UK. The general advice on choosing an intervention that is respectful and doesn’t cause harm to the autistic person would seem to exclude ABA but it would have been good to hear the author’s take on a controversial topic that often divides the autism community and the Autistic community. I’m not sure why it isn’t mentioned.

Some of the other therapies sound a bit intense to me, starting at a very young age. I’m not convinced that they all fit the criteria at the beginning of the chapter. I guess the problem is that so many of these interventions are new so we don’t know how effective or even safe they are in the long term. This is why it’s so important to listen to autistic people on this subject.

Because this is a book for parents, a large part of it is dedicated to the education system. My children are home educated and have never been in the school system. Not even pre-school. I’m aware that the school system is letting down autistic children because of the number of parents who end up withdrawing their child from school and then coming along to local home ed groups. I’ve heard a lot of stories but I had no idea of the full scale of the problem until I read the chapters on school.

I will say it now in print, I totally get why autism parents need support groups. It’s not because having an autistic child is awful, it’s because they are fucking exhausted from having to constantly fight for even the bare minimum of support that their child is legally entitled to. I’m also really, really relieved that we never bothered with school (some more info on home education would have been nice but I realise that’s not what the book is about). There is some advice on choosing a good school but to be honest, it just sounds as though it’s advice on trying to make the best of a bad situation.
There are also some fantastic chapters on often neglected topics like mental health in autism (SO important!), autism in women and BAME groups, NT siblings and holidays.

Some authors of other autism parenting books boast about their honesty when they are challenged on their cruel content. Jessie Hewitson is honest without saying “having an autistic child is bloody awful”. There’s no unnecessary personal details about toilet habits etc, her son is spoken about with love and respect throughout. But there’s also no pretending that everything is brilliant; the world is tough for autistic people and parents have so much work to do to try and support their autistic children while dealing with opposition from society. And yet, the author manages to talk about her emotions without making it all about her, which is not something you see a lot in autism parenting books. She obviously cares deeply for her son and wants the best for him, but goes about this without acting like the best thing for him is the most convenient thing for her. Sure, there are compromises to be made just like in any family; but everyone is compromising, not just the autistic child.

The language used is positive, with identity first language preferred by most autistic people, talk of differences and not deficits, and generally not treating autism as if it’s this horrible, family-ruining monster. What is often described as “problem behaviour” in other books is reframed here (more accurately) as the result of an autistic person communicating there is a problem. This approach is going to be far more helpful than just trying to treat these “problem behaviours” without looking for the reason behind it.

The advice she gives comes across like they’re helpful ideas rather than prescriptive instructions. This is general advice on supporting autistic people, not an instruction manual, and the author never speaks like she knows better than everyone else on what to do. In fact, she is often self deprecating, calling herself “an averagely flawed parent”; I disagree. I think what she’s done here will not only improve life for her own son but for many other autistic children. You’re doing a grand job, Jessie.

If you’re going to buy an autism parenting book, please make it this one.

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.

An invitation to autism parents

It would be easy for me to write a blog post about how badly the Autistic community has been treated by some of the worst autism parents. How we’re silenced with phrases like “you’re obviously very high functioning” and “you’re not like my child”.

But what would that achieve? We know we’re fighting each other. We know it sucks. Nobody really knows how to end it, I guess.

So instead of saying all the things that are wrong, that we already know, I’m going to do this: This year for Autism Awareness Month, I want to reach out to those autism parent who are reading my blog and thinking “this is bullshit”. You might read my blog and think it’s a load of old bollocks and that I’m not like your child and that I’m one of those people who’s not really autistic, just a bit quirky. That’s OK. I’ve made assumptions about you too.

BUT MAYBE, if we put our assumptions aside then we can both learn something.

I’m not like your child, but I know how bad it is to have your routine suddenly changed.

I’m not like your child, but I know what it’s like to struggle to communicate.

I’m not like your child, but I know what it’s like when everything is too bright and too loud and too confusing.

I’m not going to pretend I know everything that’s going on in your child’s head, or in your family’s life. But I know what it’s like being autistic.

I get that you’re scared about the future. The world is a horrible place for autistic people. I know! We both want the same thing; a better future for autistic people. This is why the best thing we can do is WORK TOGETHER to ensure that autistic people are listened to and supported.

So this is what I’m asking; if you’re an autism parent, drop me a message. Let me know about your life. Let’s have a virtual tea and biscuit and talk. I promise I am super-nice and I won’t swear at you or call you a child abuser.

You can tweet me or DM me on Twitter @aut_cheerful, you can message me on Facebook @autcheerful, or you can fill in this form:

 

Things you shouldn’t say to autistic people: You’re not THAT bad

There are some things you shouldn’t say when talking to autistic people. I’m sure people do have good intentions, they just don’t think things through or don’t realise the implications of what they’re saying. To keep my blog posts short and more accessible, I’m doing this as a series rather than one mega-long blog post.

I think that maybe a lot of people don’t know how to react when you tell them you’re autistic. Our society has always, loudly and clearly, sent out the message that being disabled is BAD. So the gut reaction so being told by your friend that they’re autistic is probably to downplay it or make them feel better about it.

So when faced with the news that “I’m autistic”, a lot of people will scramble to try and say something to cheer you up:

“Oh, you’re autistic? But you’re not THAT bad.”

Oh boy, let’s unpack that and think of some possible meanings.

It could be that they’re trying to say you’re not like those other “low functioning” autistic people. It’s a compliment, right? You’re almost like a normal person. You can hardly tell you’re autistic! The problem with this is that it’s assuming that autism is a bad thing and trying to distance you from it. Telling someone that the thing that explains their whole life and that permeates every single thing they do, is a BAD thing is not a compliment, no matter how it’s intended.

Of course, it’s possible that the intention behind “you’re not THAT bad” is NOT good. It could be that they’re trying to dismiss you. Maybe they’re saying “you’re making a fuss over nothing” or “everyone else manages, why can’t you?”. Being dismissed like this after trusting someone really hurts.

So if someone tells you that they’re autistic, please pause and think about your initial reaction. “You’re not THAT bad” might seem like a good thing to say, but think about how it will be received. Getting off to a good start is important for building good relationships between Autistic people and the autism community.