Hey everyone, I know it’s been a while. To be honest I just don’t feel the need to write about autism at the moment. I don’t know if this will change in the future.
Please be assured that my mental health is good! I just feel like I’m moving on from this blog. I have archived a bunch of posts but left a few up. Thanks to everyone that has read my stuff over the last few years.
This is Halloween, everybody make a scene!
Sorry, I am properly excited, I LOVE Halloween. I have loved spooky stuff ever since I was a kid; I love horror movies, I love seeing all the kids in costumes and I love listening to goth music all the way through October. My kids are excited too, they’ve been planning their costumes for months and they’re bugging me to put the decorations up already.
But that’s us, and we all know that although autistic people have things in common, no two of us are exactly the same; some autistic people find Halloween difficult. Adults might find it easier to regulate the amount of activities and exposure to Halloween that they have, but kids have less control. So here are some tips on how to make things easier for them.
Trick or treating
This is the main event for Halloween for a lot of kids, but not all. Maybe your kid would rather stay home and eat candy. Have a talk with them and see if they actually want to go and let them know that it’s OK if they don’t.
When it comes to knocking on doors, some kids cannot or do not want to speak. You can explain this to people (you can always say they are shy if you don’t want to have to explain everything) and they should not demand that your child speak in return for candy- if they do they are being an arsehole so feel free to tell them (you can say I told you to say it).
There has been a lot of talk this year about blue pumpkins to symbolise autism. I’m not a fan of this for a couple of reasons- firstly, teal pumpkins have been used for a while to symbolise food allergies and teal and blue are easily mixed up. Also, blue is the corporate colour for Autism Speaks and they suck. Lastly, some kids may not want all and sundry to know they are autistic.
Costumes
There can be many sensory issues surrounding costumes. If your child can’t cope with a costume but they still want to get into the spirit of things (sorry) then consider carrying props instead. Dressing all in black and carrying a scythe is a costume, even if it’s just regular black clothes.
Visits from trick or treaters
This can be very difficult for some autistic children to handle. Where we live we get a lot of trick or treaters and they arrive sporadically from 5:30pm to around 8:30pm. I enjoy it, but it is exhausting. A lot of the kids are excited and loud. It can just be too much for some autistic kids to handle. You may want to consider putting up a sign asking for no trick or treaters. If you feel bad, you can always leave out a bowl of candy (although some kids might get over-excited and take too much!). You could also disconnect the doorbell and make sure there is a quiet space away from the front door for your child to relax.
Break in routine
Some autistic kids need a steady routine so they feel secure, and a break in this can be very distressing for them. So maybe they just want to do nothing at all. It’s likely that there will be Halloween decorations and activities at school, Cubs/Brownies etc so some consistency at home is important. I understand as a huge fan of Halloween that it can be a bit of a downer not doing anything, but as adults we just need to suck it up and do what is best for our kids. Feel free to binge on candy and horror movies once the kids are in bed!
Jump scares
Honestly, just a bad idea.
Wishing you and your families a Happy Halloween whatever you decide to do!
There are shitloads of birthdays this time of year, aren’t there? While adults have the freedom to decide how, when and if they want to celebrate, kids often have things organised for them by their parents. So I wanted to talk a bit about how birthdays can sometimes be difficult for autistic kids and what we can do as parents to support them.
Parties
Birthday parties can be loud, chaotic and unpredictable; all things that might be tough for autistic kids to deal with. If your child is invited to a birthday party, try and get as much information as you can about the venue and the schedule of events so your child can get some idea of what it’s going to be like. Photos or a video of the venue can help, as well as a list of party games or activities so there are no surprises. Some autistic kids might not want to join in the party games so maybe bring along something else for them to do if they don’t want to just sit and watch.
Hearing defenders might be a good plan and maybe ask other kids not to pop balloons on purpose (although it can sometimes happen by accident, so be prepared)
Also have an exit plan in place in case you need to leave suddenly. There is no point forcing an overwhelmed child to stay at a party- which is meant to be fun- if they are having a horrible time. Don’t forget how sensory overload feels to an autistic person.
Hopefully other parents will understand that parties are not always accessible to autistic kids, and that declining an invitation is not necessarily a sign that your autistic child doesn’t like their child. Some autistic kids appreciate being invited even if they don’t want to go, but some don’t.
If it’s your own child’s birthday consider that they might not want a party at all. They might just want a day with immediate family doing something fun, or they might just want their routine to continue as normal. Please remember that it is THEIR BIRTHDAY and they should be able to choose how to celebrate, or if they want to celebrate at all.
Presents/surprises
Some autistic people find it very difficult to cope with surprises- even nice ones like presents. The idea of unwrapping something in front of other people and not knowing what’s inside fills me with dread. I hate getting unwanted presents because I never know whether to be honest and switch it for something else or whether to just pretend I like it. And if I do pretend to like it then I have to decide whether to charity shop it later or leave it lying around the house as a permanent guilty reminder.
I have no idea if neurotypical people go through all this. But anyway. Please, please check if your autistic child wants a surprise or whether they want to choose their own present. They also might not want it wrapped up. Don’t spring a surprise on them because “it’s part of birthday fun”; the day is not ruined if they are not surprised.
Singing
Sitting there while people sing Happy Birthday can be super awkward. Please check if your child wants it and let other guests know so they don’t spontaneously start singing. I have been at parties where there was no singing and it was fine, everyone still had a good time.
Balloons
They go bang. It’s loud and sudden and can be scary. They also make a horrible squeaky noise when you pick them up. If you have a noise-sensitive autistic child then they might not want balloons. As an alternative, you could put un-inflated balloons in party bags to hand out at the end of the party.
Alternative ways for parents to celebrate
I’m a parent too so I’m well aware that a child’s birthday is not just a milestone for them, it’s a huge milestone for the parents as well. You might feel a bit down about it if your child doesn’t want to celebrate at all, or if they want to leave out activities you enjoyed as a child like party games.
It is fine to celebrate as parents in your own time. Have a nice dinner and watch some baby videos, make a scrapbook of your child, make a cake and eat it yourself… there are so many things you can do to mark the milestone yourself. Your kid is another year older and that’s something most parents will want to recognise.
Whatever you decide to do as a family, remember that just like Christmas, there is not one correct way to celebrate.
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.
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.
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
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”?
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.
The season is upon us! Autistic people all have different needs and preferences so these may not apply to your family, but here are some general ideas on how to support your favourite autistic people through the festive period. (Please note, I have only a little knowledge of other festivals this time of year so I don’t know whether these tips will be relevant or not).
Don’t make us go shopping
Shopping can be tough at the best of times. Shops are deliberately designed to be confusing, so that you spend longer trying to find what you need and therefore end up spending money on things that you spot and didn’t need. I mean, look at clothes shops. Why can’t they put all the t shirts in one place? Because they also want you to look at the jumpers, the jeans, the shirts and loads of other stuff that you didn’t need to buy. I dunno if NTs enjoy this? Let me know. It seems like a total PITA. I’ve been known to walk into a clothes shop, turn around and walk right out again without buying ANYTHING, because fuck spending ages searching through racks of clothes while too-loud music plays and weird lighting does my head in. I swear shops in the future will be people rifling through a skip of clothes in total darkness while happy hardcore plays at ear-bleeding volume. And then everyone goes for a coffee afterwards. WTF, shops?
Anyway, add extra crowds, loud Christmas music and FLASHY LIGHTS to all this and it’s a no thanks from autistic people. Do your shopping online or arrange childcare. Please don’t force autistic people into an extremely uncomfortable situation.
Go easy on the Christmas decorations
Check with your autistic family member what is OK and what isn’t. Extremely flashy lights are generally a bad idea, as is anything very in-your-face. The break in routine can be really tough but it’s harder when your house looks TOTALLY different.
Don’t surprise us without checking first
Some autistic people are fine with surprises, many are really not. I once spent an hour hiding in the bathroom after receiving a very expensive and very unwanted surprise present. I felt awful, because I knew it was expensive and well-intended, but I didn’t want it and didn’t expect it. So I had the choice of pretend to like it and let it sit around a while before selling it on, or just coming clean at the risk of upsetting someone. Having to make a decision like that on top of all the normal Christmas stuff just tipped me over the edge. I don’t mind unwrapping stuff (some autistic people do) but I need to have a bloody good idea of what’s inside. If I want something, I’ll ask for it. If I don’t ask for something, it’s because I don’t want it. CHECK FIRST before you surprise people. And don’t think that ‘Christmas is ruined’ because something isn’t a surprise; Christmas is ruined if people have a bad time.
Don’t get hung up on the ‘right’ way to do Christmas
There isn’t a right way to celebrate Christmas, despite what the many adverts and magazines will have you believe. There are so many ways to celebrate Christmas, and the thing they all have in common is that people are having a good time. Whether or not that includes a tree, or presents, or turkey, or lights and music, doesn’t really matter in the grand scheme of things. Don’t make Christmas about what society tells us is traditional, make it about people. Don’t insist on doing it the ‘right’ way to the detriment of autistic family members. If you’ve got autistic children AND NT children then why not start new family traditions that you ALL enjoy.
Season’s Greetings to you all!
This is like the nineteen millionth blog I’ve attempted to start (some barely got beyond the ‘planning shit at 3am when I should be sleeping’ phase). I did try and start an autistic blog a couple of years ago, but I have learnt a lot since then, so I’m kind of glad I didn’t carry on with it. I wasn’t in the right frame of mind. I was still so new to knowing I’m autistic and I hadn’t really found out what it meant to me.
NOW I am in a better place. I am comfortable and confident and ready to share my squillions of thoughts. I have spoken to hundreds of autistic people who have been amazing, intelligent, thought-provoking, wonderful people and have given me new perspectives on things. Now I’m Autistic and Cheerful, which is something a lot of people don’t realise is even possible. Maybe having a happy life ‘despite’ being autistic is a revolutionary act. I dunno. I just like being autistic.
But I am still not quite ready to interact. So I’m going to turn off comments to begin with. I’m also going to try my hardest to avoid looking at stuff like clicks and likes, partly because that’s where my blogs fell down in the past. Any kind of pressure or deadlines or expectations leave me running to the hills. I need to do this for myself, not for other people. If it helps other autistic people then that’s brilliant. I don’t really consider myself an activist because I just haven’t got the spoons to spare, but I have A Lot of Opinions about Autistic rights.
Mostly I just want people to listen. Listen to Autistic people.
Autistic and Cheerful 