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This is my entry for 'Autism Uncut'. It talks about myself, how a Mexican bandit from a movie helped me to discover myself, and how that caused a problem…
My film ‘Force of Habit’ is revolutionary. It will change the world, with your help.
Autism Acceptance Day 2020
Autism awareness isn’t enough. We need autism acceptance and understanding.
Today is world autism awareness day.
If you ask someone 'are you aware that autism is a thing that exists?', I think the vast majority will say 'yes'.
Awareness isn't enough. Whilst most people are aware of autism, very few seem to understand it. Even from a purely academic point of view. Many do not know that autistic people are likely to have sensory processing difficulties. Many do not know about the various comorbidities that occur alongside ASD. Many know nothing of the problems autistic people have with routine changes, or the anxiety an autistic person may feel in ambiguous or new situations. Many know absolutely nothing about stimming, or special interests, or meltdowns or shutdowns.
Even fewer know about the lived experiences of autistic people. Few know of the experiences of their parents, other than the occasional story in the news or media.
I know about my experiences. I do not know what every autistic person experiences because, hey, I'm not every autistic person. I don't know what it's like to be non-speaking. Ido Kedar and Amy Sequenzia do, and write eloquently about their experiences. I don't know what it's like to have the medical comorbidities many autistic people have, such as Ehlers Danlos syndrome. Other autistic people do.
We don't need autism awareness. We need autism acceptance and understanding.
Here's the thing. I like being autistic. I would not ‘get rid’ of my autism. Some parts are really difficult (such as sensory overload, anxiety over routine changes, meltdowns, etc). But what makes everything way, way more difficult is other people's reactions. When people work to understand you, and accept that what you're saying, what you're experiencing, is real, it makes everything a lot easier. It makes adaptations much more possible.
So for autism acceptance day, I ask you to listen. Listen to what autistic people say about their experiences. Listen to what their parents say about their experiences in the SEN world.
Don't dismiss something you don't understand. Being aware of autism isn't enough. Listen to what the people themselves are saying, and try to see the world from their perspective. (And yes, I'm aware I'm literally telling you to develop your theory of mind 😅).
Accept that every person is different, every experience is unique, but some do occur frequently in autistic people. And just accept that it is real for that person. Just because the sound of an ambulance doesn't hurt you, doesn't mean it doesn't hurt me. Just because you can easily change your schedule, doesn't mean it doesn't fill others with anxiety.
Oh, and wash your hands. Seriously.
Touch Sensitivities
A lot of people know I don’t like hugs.
This isn’t entirely correct.
I hate light touch, because it is physically painful and/or uncomfortable. Unfortunately, it’s a regular part of life (which I very much dislike). Often when people meet me, they consider a light touch on the shoulder an acceptable greeting. When someone wants to get around me, they will usually lightly touch my hip or waist and move me out of the way. People want a hug when we first meet, or when I go somewhere to meet them (even if I don’t know them well). Generally, I can get away with sticking my arm out for a quick handshake instead. Handshakes are still uncomfortable, but they are not as anxiety-inducing as hugs. I find that people try to hug myself and other women, but attempt a handshake with men, which is annoying.
One way to explain this would be to imagine you are stabbed by a tiny needle. It’s gonna hurt, you’re going to flinch away, and you’re going to say ‘ouch!’ and probably get annoyed at the person who pricked you. You will probably try to avoid this person. The prick will be even worse if it’s done unexpectedly, or done from behind you when you cannot see it coming.
Now imagine people get offended when you flinch away, or get annoyed when you try to say ‘no, I don’t really want you to stab me, thanks’. Imagine pricking someone was an acceptable way to move them, to greet them, to show affection. That sounds like a pretty crazy world, in my opinion.
For me, light touch feels painful, like a pin prick. And like a pin prick, I need to rub the area that has been touched afterwards to remove the horrid muscle memory. People often get offended by this, or at the very least look affronted. How dare I deal with the pain in a way that doesn’t affect them at all! (Sarcasm)
On the other hand, deep pressure or firm touch feels fine, calming, and even intensely relaxing. Going back to the needle metaphor, consider a magic trick. A magician pricks themselves with a pin to prove it’s real. They then go to lie down in a bed of pins. The audience is in suspense, worried they will be sliced up. But no! They are fine. They lie down, then get back up and bow with not a scratch on them.
Firm touch is similar to this, in my experience. Light touch takes all of my attention. My nervous system is going ‘Hey! Over here! We are under attack! Pay attention! Who cares about maths or writing, this is painful and we must defend ourselves!’. I’m hyper-focused on that one tiny spot of light touch. Deep, firm touch is different. My nervous system registers the touch is there, and then moves on. I think this may be how non-autistic people experience all forms of touch.
Deep pressure can be incredibly calming. I cannot explain it, but maybe consider the relaxing feeling you get when you sink into a comfy bed after a long day on your feet. The comfort and relaxation is amazing.
Back to hugs.
When I was younger, people would often hug me even if I was overwhelmed or made it clear I didn’t want a hug. I’d feel guilty for rejecting their hug, but also angry and confused as to why I couldn’t deal with it like everyone else. I came to associate hugs with pain and sensory overload, because people would try to comfort me during a sensory overload in the same way that they would comfort a non-autistic child; by hugging me. But in sensory overload, hugs are painful. Touch is painful. I remember that once a friend wanted to hug me at lunch time in school, but that situation is incredibly overwhelming and I refused. She proceeded to circle her arms around me without touching me ‘because that’s not a hug’. I curled up into a ball and kept saying ‘no’ and trying to ask her to stop without pushing or using force. Everyone was laughing, because they didn’t understand that this was intensely stressful and anxiety inducing. Every inch of me was in fight or flight mode. I was terrified. My senses were saying ‘something is here, something is preparing to attack’.
She eventually stopped, and I instantly moved away. But then I tried to laugh it off. Making and keeping friends is very difficult for me, and everyone else was laughing and I felt the only way forward was to suppress my anxiety and pretend everything was fine.
I didn’t feel I could say ‘that wasn’t okay’. I can’t remember if I told her about it later.
But they didn’t accept me saying no. They completely disrespected my bodily autonomy.
It’s terrifying. If an autistic person doesn’t want to hug you, PLEASE do not force them. It is so very scary, and all it teaches us is that saying ‘no’ doesn’t matter; other people’s feelings matter more than our pain and fear.
So that is why I would tell everyone ‘I hate hugs’. I believed it for a while.
I’ve since come to realise I LOVE HUGS. When they are from family or friends, when they are very tight, when I’m not overwhelmed, and, most importantly, when I seek them. If I want to hug you, I will (unless you don’t want me to). If you ask for a hug or indicate you want one, give me the choice as to whether or not I will comply. Don’t force hugs.
And please, when someone says ‘hey, I’m touch sensitive and light touch actually hurts so please don’t touch me lightly’, don’t laugh, then touch them and go ‘wait, like this? This hurts'?’.
Yes. It does. I just told you. Listen when someone tells you that something hurts. Don’t make them prove it. I’ve learned to hide the expressions of panic and pain from light touch, because it makes others uncomfortable and offends them.
If you want a hug, ask.
If they say no, respect that.
It’s really not that complicated.
https://www.stimsensory.co.uk/blog/touch-sensitivities
For the Teachers
I have 4 aunts, 3 of which are teachers (one retired). At least one of them has asked if I have any suggestions for classroom related stimming.
First of all, if someone is not harming themselves, others, or property, then there is no need to stop them stimming.
Try to see this from the child’s perspective.
We take in too much information throughout the day and often need a bit longer to process it and respond:
Stimming can help us cope with this excess of information. If I’m having a stressful day, then adding more stress in the form of a classroom is going to be anxiety-inducing. But I deal with it, because I don’t really have a choice. One method of dealing is stimming.
The next video shows the sensory overload of a supermarket. A classroom is rife with similar overwhelming sensory inputs. The overly bright fluorescent lights, the clock ticking in the corner, the ‘naughty’ kids chatting away, the ‘class clown’ making people laugh until your head throbs, the fake fruity smell of deodorant or perfume, the noises of kids in other classrooms or the hallways, the birdsong from outside…
School is sensory hell.
Imagine being in the sensory hell of the above video. Then imagine being there for 6 hours a day, 5 days a week, with one hour for lunch (which is even worse!). Then try doing work on top of that. Frankly, you would struggle.
This is everyday life for many people. And the ways they use to cope can lead to intense bullying (most autistic people have been bullied) and severe mental health problems (autistic kids are 28x as likely to experience suicidal ideation, and anxiety and depression is common amongst autistic people).
Honestly, rather than trying to encourage the child to stim in ‘less annoying’ ways, I would suggest finding ways to reduce their sensory overload. Fight bullying, don’t tell the kids the same things they’ve heard from mean kids already (that they are acting ‘weird’ and should stop, that they are ‘stupid’ or worse words, or that they are ‘annoying’ others). Trust me, we have heard it already. And we see it every time autism is in the media. Teachers can make an enormous difference to a confused, isolated kid. Don’t encourage them to mask (it can lead to intense anxiety, even depression). Don’t tell them off for stimming.
I get that stimming can be ‘disruptive’. But all of the non-autistic kids are fidgeting in ways that are annoying me, and aren’t getting told off. Yet when I do it, I have to stop because they are ‘struggling to focus’.
Figure out why a kid is stimming in a disruptive manner.
Are they humming loudly? Maybe the room is too loud and they need to block out the background noise.
Are they tapping the table? Maybe those kids chatting in the back are saying cruel things that they want to ignore.
Are they chewing on their clothes? Maybe they are experiencing high levels of anxiety because they are perfectionists, and the chewing comforts them.
Before you try to change the child, try changing the environment.
Look at the environment from an autistic perspective. Or bring an autistic person in to evaluate your classroom.
Maybe your clock ticks. I would suggest replacing it, but due to the non-existent budget for teachers it may be better to simply remove in and ensure you have a digital time display available like the laptop. If a child asks for the time, tell them (not knowing is very anxiety inducing in my experience).
Maybe you leave your windows open. Maybe you have radiators on. An autistic person may struggle with the fluctuating temperature, so allow them to pick a spot away from either of these things, and try to avoid using these methods unless necessary.
School clothes are incredibly uncomfortable! I would want to rip mine off by the end of the day, because the jumper was loose and kept brushing against my skin lightly, which was physically painful for me. Try bringing this up with the head teacher so they can consider this the next time they change a school uniform. Maybe children with an Autism Spectrum Disorder diagnosis could be allowed more lax uniform rules (for example, just ensuring they have a white top rather than a white polo). Maybe they could wear something comfortable underneath, and just wear a school jacket or jumper over the top. Also, it’s really annoying when you have to wear a dress and have no choice. School dresses hurt because they kept brushing against me. Encourage your head teacher to have gender neutral clothing!
Let the kid go somewhere quiet, like the bathroom or an empty room. If they are older or more responsible, let them have headphones in class. If they aren’t, make sure they have access to ear defenders.
Give kids somewhere other than the canteen to go for lunch. It’s really loud! People sometimes throw food. The floor has messy, slippery bits. It’s a social nightmare if you don’t have friends.
TALK TO THE INDIVIDUAL. Maybe send the child’s parents an email asking how to make your classroom more autism friendly. Maybe talk to the child after class is over (make it clear they are not in trouble though!). Also, instead of expecting answers the first time you ask, encourage them to write down things during class if they annoy, frustrate, or overwhelm them, and give them to you at the end of class. Asking them once with no time to think back on it means you will miss a lot of stuff.
Once you’re completely sure you’ve done everything you reasonably can to help the child, then MAYBE consider working with them (with their consent!) on replacing ‘disruptive’ stims (whilst always allowing them to say ‘no’ and reject your ideas and just leave this extra work). If they are verbally stimming, try asking them why. If you can’t figure it out, you could buy a cheap karaoke set, or just get them to go into a separate room for 10 minutes in the middle of a lesson when they get restless, to sing and hum to their hearts content. If they are stimming with their body or seeking tactile input (EG tapping, clicking, etc), try finding silent, tactile stim toys for them to use instead. Maybe something to do with a special interest. Work with the child, not in opposition to them.
Also, don’t stop kids from rocking. It doesn’t affect anyone. It doesn’t make noise, it doesn’t involve destruction, it doesn’t affect anyone else in any way other than making them feel ‘uncomfortable’ with the ‘weird’ behaviour. It is very good for decreasing stress and coping with the sensory environment.
Depending upon the age and maturity of the kids, they could be taught about autism and about stimming. I’ve heard kids nowadays may be kinder towards kids with disorders, disabilities, and special needs (obviously not all kids, there is more than enough evidence that many kids are still cruel). So maybe explaining why a child is stimming would help them not get annoyed by it. Because people seem to get annoyed by things they don’t understand even if it doesn’t affect them (such as rocking). This won’t help with ‘disruptive’ stims but it may help increase understanding and acceptance, which is vital.
https://www.stimsensory.co.uk/blog/2019/4/2/for-the-teachers
Some of my sensory seeking behaviours and some ways in which people can help :)
www.stimsensory.co.uk
Day 22: Dispel a myth
Women and girls don't have autism.
Yes they fucking do!
I am going to put down missing a day to not being well, you never know one day I may be able to post routinely.
Day 17: Accommodations
If there is a schedule then stick to it or give me as much warning as possible if things are going to change.
Dont force eye contact, touch me without asking or force social interactions.
Most importantly listen to me, I will tell you if there is something you need to do or something I am not comfortable with.
Day 18: Someday.......
not everyone will be compared to that 5 year old boy with autism that is the child of a friend of a friend. Autism is a spectrum, is different for everyone and everyone's needs are valid.
Day 13: Family
Some of my family understood my need to get a diagnosis as an adult, others not so much. I explained why it was so important to me and we had open discussions about it. After some time they have all come to understand why I needed answers. I had to give my parents time to get to grips with my diagnosis, when I thought about it I realised that it must have been an emotional time for them. Every so often I will get a comment about something like my lack of eye contact, I just remind them that there is a reason I cant do it.
Be patient, its a lot to get used to and some will need help to understand but that doesn't mean that they don't want to learn
