the new "Adult Autism Strategy"

[Selina]

Is anyone else here affected by this?  (It was published this morning.)

[jonboy]

I am. But I shall believe it when I see it.
I get the best part of no support from the government at the moment.

John

[Selina]

I feel the same, jonboy.  It's all weasel words until they put their money where their mouths are.

It took me seven years to get my autism diagnosis, and another two to get any meaningful support.  The fight nearly killed me.  I get some (though still inadequate) social care support now - it keeps me alive, but doesn't enable me to recover my wrecked health or - god forbid! - use my skills and experience to get a job and give something useful back.

My autistic lodger and I were in tears this morning, reading this strategy.  So little, so late - and no new money at all for services.  She can't get a diagnosis because she can't get support, and can't get support because she can't get a diagnosis - I know a lot of autistic women who are or have been in that situation, and it's a killer.  (And of course there are loads of men too who exist rather than really live because of lack of care.) 

The irony is that broken autistic people cost the state far more in healthcare and prison costs in the long run than they would spend on adequate diagnosis and support from the start.

I really hope this new strategy will herald some positive changes, but ...   

[jonboy]

I totally agree with what you have said.
I had to pay for my diagnosis myself. I stupidly thought I would get some kind of support afterwards, but nothing.
It would be nice if I could just see someone that understood me, instead of people in the NHS trying to apply a neuro typical approach.

The best support I've had is on forums on the net, and a local support group that meets once a month.

[Crumble]

I naively thought my son was the only one that was asked to pay for his own diagnosis. I couldn't understand why but they said it would have been different if he'd been younger as they had provision for children's diagnosis.
As if life isn't hard enough for him.

[Selina]

I could never have afforded to pay for my own diagnosis, but I was eventually able to persuade the university I was attending at the time paid for it, in the same way that they pay for dyslexia assessments.  (That was after the university had argued for two years that an assessment wasn't necessary, but it was also too late to save me from subsequently thrown out (off a self-funded MSc course) because of not meeting deadlines due to not having managed to get my social care needs met ... but that's another story!)

[Selina]

It's good to find another couple of people here who are interested in the topic of autism.

[shaz]

i`ve got three children on the autistic spectrum. my daughter is 16 next month so will be entering the adult world. I`m sure it will bring different battles!!!!!!! I go to a support group every week and everyone seems to have the same battles to get the right help for their children x

[Selina]

I guess if she has a diagnosis your eldest daughter is part of the way towards getting the support she needs to live as an independent adult.  I hope she does well. 

Are your other two girls as well?

[merrywidow]

my son has ASD, ADHD and is severly dyslexic. i had to pay over £4,500 to get him the correct education. the council wanted him to go to mainstream secondary!!!!. it took a long time but i did it, though my health did suffer greatly, but at the end of the end it was worth it.

i find society just class my son as "a naughty child" and a "good slap" would make him better. such ignorance.
rant over , sorry sharon xx

[shaz]

I wouldn`t be sorry for the ignorance of society. I have 3 children with ASD, ADHD and each have seperate indiviual conditions such as epilepsy and dyspraxia. I am having to go to tribunal in july to get 2 of them into the right MLD schools. I could rant all day about lack of support and understanding.

[merrywidow]

i went to trubinial, its hell. i didnt sleep for 2 nights before the case. i was scared of making a fool of myself or wrecking the case, but the legal team i had, though expensive did a wonderful job. they had the expertese to prove that my son needed speacailist education, and not mainstream school.