Autism research – young people and social media

Exeter University is doing some research into young people with autism and social media. They’re currently looking for participants to fill out this questionnaire. There will also be a second part to the study, which will be a forum discussion (plus the chance to win Amazon vouchers).

Participants should be aged 14-19 and use social media/blogs. It’s a really simple survey, shouldn’t take more than ten minutes. Even if you’re not eligible to take part, it would be great if you could share this post and pass on the link to anybody you know who might be interested.

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Abort mission

To get cheap rent, I was persuaded to become a hall senior and look after events for the incoming university freshers.

That was already terrifying enough given that I really do not do well in club/party/generally social settings.

I didn’t imagine the decorating would be this bad though.

Loud music, lots of people, cleaners… Oh yeah — and balloons.

It’s bad enough when people keep bursting them and shouting ‘Grenade!’ But we also have a fancy mechanical pump. The noise is horrific. I’m shaking so badly and I flinch every time it starts up again. I need my headphones (if not a full sensory overload help kit) but that would mean wading through the sea of balloons to get to my room.

I would rather die than have to sit here for another minute.

I don’t know if I can do this for an entire year. I’ve told everybody about my mental illnesses. (I’ve just been officially diagnosed with severe depression, anxiety and PTSD. Still waiting for confirmation of my autism, ADD etc.) They’ve said that I can take whatever time I need. Except I really don’t know how to ask for that.

Only another nine months to go…

Keeping it in the family

My family are worried about my cousin, whom I’m going to refer to as Cathy.

Cathy has just started secondary school and is already in quite a bit of trouble for forgetting her books and homework. She also has trouble remember the way to school, which is only a ten minute walk away. There are other things about Cathy. She has problems with speech and I’m almost certain that she has developmental language disorder.

My family has recently come to the conclusion that she has learning difficulties. I think it’s autism.

After mentioning that I this, people in my family started to see what I meant. As one of them put it: “The problem is, if she does have autism, it’s only very slight.” In terms of ‘functionality’ (I hate the whole high/low-functioning concept and I apologise for using it), she’s much closer to low-functioning.

Anyway, my family and the school are meeting tomorrow to discuss what they can do to give Cathy extra support. I hope that they’ll be able to help her so she doesn’t have to struggle through it alone like I did.

 

Rock and roll

Disclaimer: I’m not entirely sure if I can explain rocking in a way that makes sense to neurotypicals so if you have any questions, drop them in the comments below or email me at wiredforautism@gmail.com.

I always knew that I rocked. I’d be sat cross-legged on the bed and suddenly realise I was bobbing gently back and forth. I brushed it off; at the time it didn’t mean anything. Then I realised it was an autism thing. Now I can’t get enough of it.

The repetitive rhythm and easy momentum are indescribably soothing. It doesn’t take any effort or conscious thought, it’s just something that’s constantly there in the background. It’s almost like breathing. It happens naturally but when you become aware of it, it becomes more intense. You might start out only moving by a few centimetres but once you’ve realised what you’re doing, you rock harder and faster until you’re like a Weeble .

Weeble Farm
Weebles: they wibble and they wobble but they don’t fall down. Credit: Lance McCord

Rocking is also a great way to calm down if you’re having a meltdown. I’m sure there’s a scientific reason for it and I’ll be sure to let you know what that is when I find it. Until then, keep rocking!

Wait, was that a flirtation?

Spoiler alert: I am a walking stereotype. All the As: autistic, asexual, aromantic (and mostly agender although that’s not strictly relevant here). My autism and orientation can’t be separated due to the huge overlap. These facts combine to make me (and the many others like me) remarkably oblivious.

There are actually two stages to this. The first part is the not having a clue what’s going on stage. It might be the only time in life where I enjoy being completely in the dark.

The second part is the slow realisation and subsequent personal crisis. Not quite as much fun. Taking a while to understand what people are getting at is a bit like wearing long socks that are gradually slipping down during your commute (bear with me, this isn’t exactly a subject that easily lends itself to analogy).

Maybe you’re aware that something isn’t quite right. Not wrong exactly, just… off. The longer you think about it (or have it rattling around your subconscious) the more pieces begin to fit together. And then the dreaded question pops into your head.

Wait, were they flirting?

I will concede that this hasn’t always been a terrible thing. As a kid I did quite well out when two of my classmates had a year-long battle for my attention. Neither of them had any chance but I didn’t mind the free chocolates.

As a not-quite adult I got a free book because the cashier was hitting on me (thanks mum for blocking my chances of more freebies). I was only pleased because books are sacred and that shopping trip introduced me to my all-time favourite (Catch 22 by James Heller if you’re interested).

As an actual adult a fellow concert-goer who bought us a pitcher of cocktails to share. Having found drinks I actually like the taste of, I have begun a slow descent into alcoholism. Or at least I would have if I actually had money.

Every other incident has been horrifying, even if I later conclude that they were just being friendly. Fortunately, several of the people that fall into this category are now in relationships with other people I know. The rest seem to have got the message that I’m really not interested. That’s one of the upshots of autism — I’m really good at sending out “you need to stay 9400 ft away from me” vibes.

Autism gives me enough trouble dealing with people as it is. Being so drastically touch averse also means that I will most likely have a meltdown the second anybody invades my extensive personal space. I sincerely hope that the majority of these cases are just an overreaction because I have no desire for either a relationship or having to come out to avoid one. (Coming out in itself requires a lengthy vocab lesson and people still don’t understand.)

What’s the take home message here?

Don’t flirt with me*. It’ll just be awkward for both of us.

*I will however accept books/food/alcohol if you then promise to leave me alone for the rest of eternity.

 

Casually cruel in the name of being honest

If you haven’t already seen it, the BBC had this excellent account  of being inappropriately and brutally honest.

Being completely context blind is not helpful when your friends are neurotypical and don’t understand that you’re not trying to be rude — you’re giving them the truth.

Thankfully I can avoid some of the more obvious traps. People don’t ask me to comment on their appearance because they know I couldn’t care less (a winning combination of total honesty and distaste for societally imposed beauty standards). In the BBC article, Maura Campbell confesses to someone that she doesn’t have a clue who he is. My anxiety would stop me from ever doing this. When I thought about it, I realised the anxiety stemmed from the autism.

I have no brain-mouth filter whatsoever and have certainly regretted my honesty at times. Eventually it dawned that being so callously capricious and cruel was something of a problem. Putting aside what this realisation did to my idea of self-worth (that’s a discussion for another therapy session), it made me remarkably hypersensitive. I cringe at every joke, regardless of how the recipient takes it. All I can think is that they might secretly be hurt. I also think it’s my fault if they are, even if I’m not the one making the joke.

I don’t have a solution to this one. A time machine maybe so we could go back and erase all the things we wish we hadn’t said? Or perhaps more frank discussions are needed. If neurotypicals explained when we are being too honest, it will help us learn to avoid similar situations in future. I’m not one for self-censorship but sometimes people are happier if you keep some things to yourself.