“Fighting autism” is an exercise in futility

In some parent groups- maybe most parent groups but I try to avoid them if I can, despite being a parent of autistic children- you will see parents post about “fighting autism”. “I’m kicking autism’s butt”, they say. Except autism does not have a butt (which is a sentence I never expected to write).

The idea of fighting autism doesn’t work, because autism is not a tangible thing. It’s not a tumour that can be removed, it’s not an infection that can be treated with drugs, it’s not an injury that can be helped with physio. It’s a brain difference. Really there is no such thing as autism; there are only autistic people, and fighting autistic people is kind of a dick move. Don’t do that. We’re outnumbered.

Some parents talk about fighting autism in regards to behaviour. The problem with that is that autism isn’t behaviour. If an autistic person stims in the woods and no one is around to see, is it still autism? Behaviour is just the outward signs of autism. Even if we are not “acting autisticly”, either because we have been trained out of it or because we are asleep or something, we are still very much autistic. Don’t think that because you can’t see it it means that we can’t feel it. Autism is always there.

It’s pretty well-known amongst the Autistic community that masking autistic traits, whether we are trained to do so or whether we learnt as a method of survival, is detrimental to autistic people. Having to pretend to be someone else to be accepted is a really shitty thing for your self-esteem and mental health. Plenty of autistic people have PTSD from being forced to mask. This is what really happens when you “fight autism”. It ain’t pretty.

There is definitely a fight to be had, but it’s the system that needs tackling, not autistic people. I know it’s a mammoth task but imagine if all that misplaced effort that’s put into fighting autism was directed instead into changing society to make it a better place for autistic people. That would help all of us.

Stop fighting autism, start fighting for autistic people.

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Stop victim-blaming autistic children for being bullied

I just read this article about a 10 year old boy who was made to list ways he could change his behaviour to make other children like him and to stop bullying him. This has brought back so many bad memories for me and part of the reason I do this blog is to increase knowledge and acceptance of autism and other neurodivergences to make sure that kids growing up now don’t have to go through the same shit my generation did.

I know his parents probably won’t read this, but some parents do. And what I want to say to your kids is

THERE IS NOTHING WRONG WITH YOU.

The fact that the onus has been placed on a neurodivergent child to change their behaviour to suit others is BULLSHIT. Autistic behaviour is not a choice. It is normal and natural to us. Being a bullying shit IS a choice, especially when it is done long-term. Everyone has bad days but to target someone for this long is deliberate. Those children are the ones that should be changing their behaviour. Where are their posters saying “How can I stop being awful to other kids”?

We have GOT to stop this idea that we need to change autistic people to get other people to like us. Believe me, I spent many years at school, college and university trying to get people to like me. It doesn’t work and it just made me tired and miserable, anxious and depressed.

Now I have all the friends I need. Many of them are autistic and we understand each other well. Some of them are neurotypical and are used to me being a bit different. They don’t care; they like me for who I am.

Acceptance of differences is perfectly possible and should be encouraged. There will always be people that are more resistant to the idea but we need to show them it can be done.

To those kids who are struggling; it gets better, I promise. You are perfect the way you are and you will find friends who accept you. Someone that will only be your friend if you change who you are is not a real friend.

Asking for support in an autism-positive way

Quite often I read things online written by parents of autistic children who need help. As I’m also a parent of autistic children, I totally get it that sometimes it can be tough. But as an autistic person it can be crushing to read blogs, FB posts, tweets etc saying how awful it is raising an autistic child. I was that child once and let me assure you it’s no walk in the park being an autistic child either.

Autism acceptance is essential to good mental health in autistic people of any age. But acceptance doesn’t mean that you can’t ask for help. There’s just a positive and a negative way to do it. Negativity and lack of acceptance about autism does not make the lives of autistic people easier. At the moment we are not treated that well and unless things change in the few years it will take for your child to become an adult then they are going to face the same problems, which is the exact opposite of what autistic adults want.

So, here are a few ideas for reframing requests for help that won’t stigmatise autistic people.

Negative: “My life really sucks because of my autistic child, and I want things to be easier for me.”

What’s wrong with that one? Well, it’s all “I” and “my”. No mention of the autistic child’s life, which is undoubtedly also tough if their reactions to situations are causing problems for other family members.

Positive: “We’re having a tough time. How can we make our lives easier?”

Acknowledging that everyone needs to have an easier life doesn’t put the blame on the autistic child. Families can work together to make all of their lives easier.

Negative: “I hate my child’s autism.”

Autism is an integral part of who we are and cannot be separated from us. So when you say you hate your child’s autism, it stings a lot; you’re saying you hate who your child is, and I don’t think you mean that.

Positive: “I hate seeing my child struggle.”

This way doesn’t blame a part of your child that you can do nothing to change while also acknowledging how awful it is to see your child having a bad time.

Negative: “I wish I could cure my autistic child.”

Not only is it not possible, but most autistic people do not want a cure. A cure would mean changing who we are. It would be like replacing our personalities, and doesn’t that make us who we are? A cure means replacing us. Is that what you want?

Positive: “I wish the world was a better place for autistic people.”

A hell of a lot needs to change for the world to be more accepting and accommodating for autistic people. But what if autistic people and non-autistic parents could work together? Imagine what we could achieve. To do that, people need to accept that autism is natural and does not need curing. Supporting autistic people rather than trying to change or cure us will mean better mental health and a better quality of life for autistic people.

Reframing everything in an autism-positive way will improve things more for autistic people than demonisation, pity or rejection. I’m not saying you should never have a good moan, but think about what effect your words are having and who they are reaching. Words have power; you can choose to change things for the better or to keep things the same.

What is autistic burnout?

If you’re autistic then you’ve probably experienced burnout at some point, although maybe you didn’t know what it was, that it has a name and that it happens to a lot of autistic people.

So, what is burnout? I don’t think it’s an official thing; it’s something that autistic people know about, but maybe parents and professionals don’t. Burnout is when your brain just can’t carry on the way things are. You might sink into depression, you might have heightened anxiety, you might need to use forms of communication other than speaking. Maybe you’re extra snappy or cry more easily than usual. Maybe you cannot see a way to get through what you’re going through. Simple things like remembering to eat and wash might become much harder than they were before. Welcome to burnout.

Last year I had a burnout caused by unexpected confrontation. To be honest, I was doing a lot before that which probably didn’t help. I’d just organised my first autistic pride event, which went really well but took a lot out of me. Having something unexpected and not pleasant happen just tipped me over the edge.

So, I closed my social media accounts for a while, stopped writing my blog and left nearly all of the online autistic spaces I was on. I felt like I would never get back to it. I was ready to just quit forever.

Recovery from burnout can take a long time. It took me probably 9 or 10 months to start feeling like I could get back to normal (normal for me, anyway!). I started feeling braver and rejoining the autistic community, just a little at first but then more and more. Now I’m feeling almost 100% again. My anxiety still sucks and I still have insomnia and I’m still a massive coward about most things, but I’m back where I was before. Any progress is welcome.

Burnout recovery tips

        • Give it time. You might not be able to take time away from everything, but try to factor in as much rest time as you can.
        • Spend time with your hobbies/special interests. Time doing things you love can be really healing.It’s OK to avoid some things if you need to.
        • Don’t feel bad if you need to skip out on some non-essential responsibilities. Looking after your own mental health is important.
        • Delegate if you can. Asking for help can be really difficult but if you are able to delegate any tasks, even temporarily, then that is one less thing to worry about.
        • Know that you’re not alone. A lot of autistic people have been through burnout. It’s not the same for everyone, but we can empathise with each other.
        • Don’t forget basic self-care. You can use apps or alarms to remind you to eat and drink.

       

What is sensory overload like?

I want to talk about sensory overload because it’s something that’s often neglected outside of the Autistic community. So many “experts” focus on the socialising aspect of autism and so the general public often doesn’t understand why sensory input can affect us so strongly.

Our senses can be much stronger or much weaker than in neurotypical people. This means we can be sensitive to loud noise, or seek out certain noises. We might have an extremely high or low pain threshold. We might not be able to tell easily if we are too hot or too cold. We might seek out certain textures and avoid others. Every autistic person is different in what they look for to stimulate or calm their senses.

What most of us do have in common is that sensory overload fucking sucks.

Sensory overload is like being punched in the face. It is painful. It is disorientating. It is confusing. And it is a normal and natural reaction for the autistic person to want to get the fuck out of there. If we cannot escape then things start getting foggy as our brain begins shutting out input to protect itself. And then we meltdown.

It is a commonly held belief that autistic people can and should be taught to cope with this to enable them to do “normal” things. I think most of us adults do try to put up with it to a degree if possible, mainly because the world is not set up for us at all but here we are living in it. We’d really rather not, but there you go. But that’s adults with control over their own environment. Children should absolutely not be taught to hide their pain.

When you see an autistic child reacting to sensory overload, they are not “upset”. They are not being naughty or stubborn. They cannot learn to deal with it and gradual exposure will not help.

Expecting an autistic person, especially a child, to “put up with it” is inhumane. Sometimes it can be avoided – do you absolutely have to go shopping on a Saturday afternoon? Is it necessary to go that funfair? Do they have to wear the scratchy school uniform?- but for the occasions where it absolutely cannot be avoided then there are tools that can help; sunglasses, ear defenders, comfortable clothes, scent-free toiletries etc. It is not a weakness to need these things. It is not something that an autistic child needs to be weaned off.

Expecting an autistic person to “deal with a bit of discomfort” that might take them days to recover from is not supportive, helpful or positive.

After all, how would you feel if you were made to go somewhere to be punched in the face repeatedly and you were told to “get used to it”?

How to cope when your best isn’t good enough

When you tell an autistic child that the result doesn’t matter and that they only need to “do their best” then that’s what they believe. But it’s not always true, is it?

I very much doubt I am the only autistic person whose school report consisted of some variation of “could try harder”. That’s what I got, all the time. Even when I was trying my absolute hardest and I was exhausted at the end of every day.

I went to a very old, very academic secondary school. It was a grammar school in all but name. Everything about it- the reputation, the uniform, the association with the right church, the selection process- was designed to set it above and beyond other schools. We were just better than the other state schools in the city.

Being an old-fashioned sort of school (honestly, they taught Latin and had a classics society) and it being the early-mid 90s, they didn’t really go in for the touchy-feely stuff. They probably still don’t. It was a high-paced, strict, rigid, academic atmosphere; a complete disaster for a dreamy, creative autistic child. The minute you started slacking, it was detention for you. And more detentions until you started picking up the pace. More comments about how you were happy to settle for mediocrity (actual comment from my school report), how you were lazy and stubborn and generally not good enough.

You start to believe it all after a while, don’t you? I felt like I had no one on my side. I had a best friend, who I lost touch with after school. I think probably I wasn’t that nice to her. I was in a terrible place mentally. But she couldn’t protect me and I don’t think she completely understood why I was behaving the way I did. I certainly didn’t, and I didn’t understand until I was 33 and had my autism assessment. I don’t think my parents realised exactly what was going on. I didn’t really talk to them about it because I didn’t know how. They just yelled at me too for not trying hard enough.

So there was me, trying my damn best and being castigated by a whole team of adults for still not being good enough. No wonder my self-esteem and confidence are completely fucked to this day.

So, how do you pick up the pieces when your best wasn’t good enough?

Reframe your expectations from an autistic view point. I am not a defective, lazy, messy neurotypical. I am Autistic and I am damn proud that I’ve survived all this shit and lived to tell the tale. I still slip all the damn time, but holding yourself up to NT standards is a recipe for shite self-esteem. We’re not them. We’re us. And we’re amazing because we’re still bloody here.

Count the small victories. My school wanted to break me. They wanted me to conform.  But I went my own way. I never broke and became what they wanted. Fuck you, school.

Define your own success. My school’s idea of success (and probably my parents’ too) was to go to a good university, get a degree and a respectable career. You know, a lawyer or a doctor or a vet or something like that. My idea of success is an excessively large herb garden full of weird and wonderful and unusual plants. I could spend hours there. I am happy there.

Find friends that feel the same way. This is why I love the Autistic community so much. In the past I felt completely alone and was always worried that someone would find out the truth about the real me- that I was faking it all. But my autistic friends get it. And no matter how weird or dark the story, there will always be at least one person that says “me too”. I love you all, you give me so much strength.

Happy Autistic Pride Day!

Happy Autistic Pride Day, everyone! Today I’m relaxing because that’s all I’ve got the energy to do. But that’s ok. There are lots of ways to celebrate Autistic Pride.

This year, the Autistic community has been discussing the essence of Autistic Pride and how events should be organised with this in mind. Having Autistic Pride as an autistic-led event is under threat as the concept becomes more mainstream and charities seek to hold more fundraising events outside of April’s Autism Awareness/Acceptance month. While it is a good thing if charities understand and support the concept of Autistic Pride (and I’m not convinced they do), the fact remains that they are once again, intentionally or not, speaking over the voices of Autistic activists. However well-meaning they are, it is not their place to hold Autistic Pride events. Not now. Maybe one day in the future there will be more equality (I have to believe there will be, otherwise what’s the point of all this?), and we can all work together without fear of being shut out. But for now they need to sit back and let us autistic adults take centre stage. It’s only one day, I’m sure they can manage.

Last weekend we held our second local Autistic Pride picnic and for the second year in a row it was well attended. We had a few autistic adults and even more autistic kids, who were happily playing together or alone while the parents chatted. I believe it’s important to include children in Autistic Pride; not just because I have my own autistic children, but because I don’t think that autistic children with non-autistic parents should be shut out of Autistic Pride just because they aren’t old enough to go on their own.

I know a lot of autistic adults are wary of non-autistic parents, and it’s not for no reason; on social media and in real life we are often told “you’re not like my child” and pushed to one side. The inclusion of non-autistic parents at Autistic Pride events is a difficult subject for many Autistic Pride event organisers. It’s hard to relax and be your proud autistic self if you can hear someone complaining about how much harder their life is because of their autistic child. So I can understand why some event organisers are keen to centre the event around autistic adults. We need our own space sometimes where we can get away from all of that and just relax. This is why decision on who the event is for lies with the organiser; it’s not easy to organise an event like this and anything that makes it easier for autistic people to attend should be considered.

I’ll admit, in the run up to the event I had all kinds of anxious thoughts about toxic warrior parents gatecrashing, brandishing bottles of MMS and You’re Not Like My Child banners. Of course it never happened; why would they bother gatecrashing a small, quiet picnic? I’m sure all this will come later when Autistic Pride gets even more well-known. As we gain more exposure and support there is bound to be a backlash. But for now I don’t need to worry about it.

The parents that came to our picnic were all lovely, by the way. Meeting people like them is making me gradually braver and more sure that what I’m doing is the right thing. And let’s not forget that autistic children often have autistic parents, whether they know about it yet or not!

For now, what I really want to do is make sure the kids of the next generation don’t go through what some of us autistic adults have been through; growing up thinking you’re broken or weird or alone. I don’t want that for them. I want them to grow up knowing that they can be happy and that they can define their own success. I want them to know they are loved and valued exactly as they are, not just by their parents but by society. I want them to know there is a place for them where they can be themselves.

So, Happy Autistic Pride Day to autistic people everywhere, of all ages. Let’s be proud of who we are.

 

 

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.

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.