Saturday, 29 November 2014

Yes, I've heard of it

 When I tell people I have Aspergers, often one of the first things they ask is "have you tried...?"

original by StelaDi
Have I tried meditation?  Cognitive behavioural therapy?  A gluten-free diet? Essential oils?  Medication?  Massage?  Biofeedback?  Horse riding?  Tapping?  Google Calendar?  Homeopathy?  This app?  That app?  This other app? 

Yes, I probably have.  Or if I haven't, there's a reason: it's expensive, it's not available here, it's not relevant to my particular needs, it doesn't work for me (I don't like touchy-swipey devices, so I don't do apps), or it's a scam designed to separate the gullible and desperate from their money.

It's usually because people are trying to be helpful or make conversation, so I try to be as polite and patient as I can.  But I've been diagnosed with Aspergers something close to eight years now, and for most of that time have taken an active interest in ways I can be the best, healthiest Aspie I can be.  "Condescending" is probably too strong a word, but when someone assumes it's never occurred to me to try a gluten free diet or see a psych, it's the word that comes to mind.

Where it does get annoying is when it's not a suggestion that I could try something, but an insistence that I should.  It's usually an argument that goes like this:

A gluten free diet helped my neighbour's sister-in-law's cousin's three year old!  Therefore you have to do exactly the same thing or you're just not trying!  And if it doesn't work for you, you can't really have Aspergers!

People are different.  If a gluten-free diet's working for that kid you've probably never even met, then good for them.  But I've tried it, and as the world's foremost authority on my own body, I can report that it didn't do squit for me.

What it did do was lighten my wallet to the point that even if it had made a difference I couldn't have kept it up.

Which brings me to the other issue with suggesting therapies for people.  If someone has executive function problems, complicated sensory issues relating to food, and a limited budget (because only a third of Aussies on the spectrum are employed), don't tell them to try a complicated, expensive, difficult to maintain diet unless you're offering to fund it and take care of the practicalities of sticking to it.

It's like suggesting I get a full time PA to handle my executive dysfunction, or an agent to help me get more freelance work: fantastic ideas in theory, but just not within my means.

I understand that it's usually people just trying to be friendly and show an interest, and I appreciate that.

But there's a chance the answer is going to be "no, are you offering to pay for it?"

Sunday, 23 November 2014

I'm not doing this shit deliberately

Sometimes, I feel like society at large has a basic, fundamental misunderstanding of what it means to be on the spectrum.

I wonder if there's a perception that Aspergers is a disorder of will or personality, rather than something with a basis in neurology and the physical body.

Maybe it's because I wasn't diagnosed until relatively late in life or because I don't "look autistic" (whatever that means) but there's a long, long history of people assuming I'm doing stuff deliberately when in reality it's either outside my control, like stimming, or something I have to do to manage my sensory shenanigans.

For instance, my inability to wear makeup or heels is usually seen as a refusal to do so, and people read all sorts of imaginary political and philosophical statements into my appearance.  Even after I've explained that my disordered sensory processing means I can't wear makeup and low body awareness means I genuinely can't walk in high heels, people act like if I really cared I'd make the effort.  My pain, loss of mobility and dignity, and inability to focus on anything or talk to anyone for the duration of the event (because it's hard to do that shit when you're in constant pain) is less important than looking pretty.

Same thing with social issues. When I was a child there was often an assumption amongst teachers and other people who one might have reasonably expected to notice something was amiss, that I was deliberately weird, deliberately unfriendly, deliberately made myself a target for bullies, deliberately set myself up to fail.  Even when I was too young to even be aware of the concept of social conventions let alone have formulated a philosophical objection to them, people thought I was being willfully difficult or making some sort of point.  It's like assuming a child with vision impairment bumped into the coffee table and broke a vase as a protest against the wasteful 21st century consumption-based lifestyle, rather than because he can't see. 

I don't know what it'd take to convince the world I'm not doing this shit deliberately.

I have Aspergers.

But I'm not having Aspergers at you.