Thursday, 28 June 2012

Not disabled enough... life with 'high-functioning' ASD

About a month ago, we reluctantly reached the conclusion that M and mainstream education had gone about as far as they could together. Even before the police got involved, we were about to approach her school with a view to changing provision. 

She has been at home for nearly 6 weeks now and is refusing to engage with the work set by her school on the not illogical grounds that if she's not going back, there is very little point to doing it (ASD does not necessarily mean lack of critical analysis). Technically, I am home educating until the school we all agree is where she should be has a place available (Manchester's penchant for closing special schools means that the only ASD-specialist school is full to capacity, having recently had to take 30 new pupils at once). She is bored and resentful, and has consequently been pretty aggressive and difficult to manage. Having always said the last thing I wanted to be was a teacher, I am now having to fulfil that role with no training or experience and with a 'pupil' who refuses to engage. I have no resources (and no income to buy any), but have been trying to engage her with the art/design work which is her real strength.

In order to give her a bit of a break (and me a bit of respite!), I took her away to my parents' for a few days, in the hope that getting out of her normal surroundings might cheer her up a bit. She spent some time with her cousin, I got a night off when she had a sleepover at my sister's and she was generally pretty well-behaved (odd non-compliance/sulking events notwithstanding).

We came home yesterday, at which point she insisted on going out on her bike as soon as we got home. I was reluctant, but as she had been cooped up in a hot car for 250 miles I though it might do her good to get some fresh air.

This morning, we're back to normal routine. She is still refusing to engage with any school work and wants to be taken to the local Hobbycraft shop to buy art materials. I said "maybe" (in reality, I am all spent out this week) and that this would depend on behaviour during the day. Then she asked to go out on her bike again. I said not during the official school day. This is when it kicked off. Things thrown, swearing. she has now stormed out of the house, with no watch and no phone - I suspect I will soon get a call from school saying she is hanging around the grounds again, but I'm not sure what I can do - she is taller and stronger than me and I cannot physically restrain her.

This is the trail of destruction she has left in her wake....

The tape measure she threw at her keyboard

The stuff she pushed off of the ottoman in our bedroom (in case you're wondering about the bare plaster on the wall, just another job we don't have the time or money to do)

"Is there anything breakable in here?" "Probably, yes." Drops crate and breaks it.

....and her sister's pottery.

All these may seem low-grade, but they are an almost daily occurrence and the cumulative effect is hard on the rest of the family. Her sister's birthday is coming up this weekend and she's supposed to be having friends over for a sleepover. Quite how we manage that one will be interesting....

 She hasn't (yet) attacked me physically, but the pent-up rage is palpable.  She has to try and get to grips with her emotions before she reaches adulthood - imagine some hapless Tesco manager trying to get her to do something she objects to as part of her open-ended "work experience" - and being cooped up with me is not helping. She needs the place at the right school - we just have no idea when this might happen.

The irony is that she is classed among the coalition's "not disabled enough" - those who do not attract high-level care/mobility and whose benefits are being reduced to ensure it goes to those "most in need" (how's that for divide and rule?). She may not need 24hr supervision, and is perfectly capable of preparing a meal (if she wants to!), but that doesn't mean that her demands on us are less, just different. A friend of mine once said, "My god, you're never off-duty, are you?" While we do get glimpses of "normal" family life, and while she can be delightful when she's on form, don't let anyone tell you that caring for a person with 'high-functioning' autism/Asperger's is easier than any other form of disability.