Supporting autistic kids at Halloween

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 (Doctor Who theme this year) 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!

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Autistic kids and birthdays

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.

What is neurodiversity?

There are many misconceptions about what neurodiversity means and how it affects autistic people, so I just want to quickly clear things up.

The pure and simple meaning of neurodiversity is that diversity in human brains is natural, and so conditions such as autism, ADHD, dyslexia and others are naturally occurring and not the result of a neurotypical brain being injured or altered in some way. Neurodivergent people are not broken versions of neurotypical people. That’s literally it. It’s not complicated.

Neurodiversity does NOT mean that people who need support should not get it.

Neurodiversity does NOT mean that “lower functioning” people are left behind.

Neurodiversity does NOT mean that autism is always great and amazing and 100% rainbows and unicorns and we’re never allowed to talk about the bad stuff.

ALL PEOPLE, regardless of what they can do or what help they need, deserve support, dignity, autonomy and respect. Neurodiversity is not at odds with this.

If you want to read something more in-depth written by someone who knows a lot more than me, then please check out Nick Walker’s thoughts on neurodiversity. If you prefer video to large blocks of text then please see Amythest Schaber’s video on neurodiversity.

“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.

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.