Ok, I am willing to concede that school actually did fuck me up quite a lot 

Yes. Ok. I have mentioned school a couple of times in previous posts like this one.

For a long time I’ve been unwilling to think for very long about school. It’s long behind me (22 years this June, not like I’ve been counting or anything, honest). I’ve escaped, I’m free, they can’t hurt me any more etc etc.

Except…

I’ve been unpacking a lot of things from my past recently and so many things seem to have happened as a result of my experience at school. Every negative reaction I have now stems back to those short couple of GCSE years. Not even 2 whole years if you factor in the holidays and exam leave. But in that short time, I was so completely broken that I’m still picking up the pieces every damn day. And so maybe now I am going to have to pick it all apart and face up to it; school fucked me up and I might never recover. That’s a scary thought.

Maybe I am going to spend the rest of my life trying to get over the way they treated me when in all likelihood they have probably forgotten all about me. It’s affecting me day AND night; if I do manage to get some sleep then I’m plagued with regular nightmares about being back in school. And when I say “school fucked me up” I do mean it was the school. Some of the other kids could be cruel at times but I had friends and I was not bullied by the other kids. It was the teachers. At the time, the fact that I’m autistic was not known. So I was just lazy, rude, flaky, messy, forgetful, disobedient, insubordinate, bad. I wasn’t trying hard enough, even though I was exhausted.

It seems pretty obvious to me that my problems with employment can be traced back to my school days. Every boss I’ve had seemed to be like my old teachers. I reacted badly to being told what to do (this is different from being asked to do something, which I can cope with if it’s done in the right way). I react badly to criticism. I can feel that old anger and resentment bubbling up even now. I can feel the need to run and get away from the situation. I have walked out of plenty of jobs and been fired from others, usually because of my “attitude”.

The lack of freedom was hard for me to cope with too, and I think this was compounded as time went on and I was in more and more trouble. It didn’t matter what I said or did or if I walked out of school; I still had to go back. There was no escape. So having someone else control my time feels terrifying. Even volunteer roles that I could quit any time I wanted. It was scary. I need my freedom.

But of all the feelings I have about school, I think the injustice is the hardest thing to cope with. The teachers there carried on with their lives in a way that I haven’t been able to do. One of the teachers who was nastiest to me even got a fucking OBE for services to education. That was hard to take.

Mostly I’m just scared; I’m scared of confrontation, of criticism, of authority, of committing my time to anything, of expectations. When I feel like someone might be angry with me I get so scared that I feel like I’m going to pass out. I shouldn’t have to worry about “being in trouble” as a 38 year old. But there you go.

As you can imagine, this stops me from doing a lot of things. My life is on pause.

But I don’t want revenge. When I was younger I did, but as I get older I get less angry and more… just sad, I guess. All I really want is for them to admit what they did and maybe say sorry. But that would mean contacting them and I’m not ready for any negative reaction I might get.

To make matters worse, I can see that the school system is currently fucking up a whole new generation of autistic kids (although, in the interest of balance, a fair portion of non-autistic kids are also being fucked up). The cycle hasn’t been broken. Could be that in 30 years time one of those kids could be reading this and wondering why nothing changed. That’s if they live that long.

Maybe I should campaign for better school support for autistic kids, but I think it would be too hard to focus past all the triggers. I’ve opted out of the school system completely for my kids; it’s just not worth the risk to their mental health, or to mine.

So I’ve started counselling again in the hope that I can find a way past all this. I’ve only had one session but it felt good to get it all off my chest and have someone else say “yeah, that actually sounds horrible”. The counsellor was also very honest about learning to live with anxiety like this rather than just “getting over it”. So hopefully I can learn some ways to stop anxiety controlling my life. I’ll keep you posted.

Wish me luck.

Advertisements

The other night I googled “Can you die from anxiety?”

The good news is you can’t, even though a lot of the time it feels like it. I’ve started worrying about the physical affect that anxiety is having on me. Sometimes I wonder if my heart will be able to keep going.

So today I wondered if maybe going back to therapy would be a good or a terrible idea.

I haven’t had much luck with therapy. I’ve been a few times and found that just talking about my problems didn’t make them go away, but just made me think about them more, which made me feel worse. And I didn’t feel better again until I finished therapy and didn’t have to talk about them any more.

I’m not saying trying to forget problems is a good strategy. I’ve been trying to do that for years with my experiences from school and it hasn’t worked. Even if I don’t think about it in the day time, my subconscious will remind me in my sleep. Or something will trigger me off during the day and have me running for cover.

But just telling someone about my problems hasn’t helped, so I need a different approach.

I’ve posted before about the CBT shitshow I had to go through with the NHS so I know that’s not going to work for me. I think I need to go back to the source and figure out how school affected me. What I wrote off as normal as a 14/15/16 year old, I can now see was a horrendous way to treat a child. I can see that my teachers deconstructed what little self-esteem I had and put me in a permanent fight-or-flight state for two fucking years. Any kind of attempt to “change my behaviour” or give me a fucking worksheet to take home just brings all that back. No thanks, mate. Shove your fucking homework.

Now that I know I’m autistic, I think it might be worth giving therapy another go, with someone who understands what might look illogical to a neurotypical mind might make perfect sense to someone autistic.

But where to begin? I don’t want to be ABAed or CBTed, I don’t want to be desensitised, I don’t want to just “get it off my chest”. What’s left? Who knows. I’m going to try and find out though. I’m so sick of being scared of everything all the time.

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.

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.