Thread by @OrigGrumpyDad

@nitawhite1 @ja54kki I think everyone should feel optimism for the future, but we really need to talk about the huge disparity between these young people, and those at other points on the ‘spectrum’ - particularly those who are non-verbal, need constant 2:1 supervision and all their care needs met...

@nitawhite1 @ja54kki ...Aspergers miraculously vanished recently, and we can’t say anything like high or low functioning, severe autism, or use any other descriptor. So it’s challenging, these young people have bright and exciting futures ahead of them and every reason to be optimistic. Others have..

@nitawhite1 @ja54kki ...very different lives, a scary future where when they turn 18 their parents can no longer make key decisions for them as they may not be capable of deciding what T-shirt to wear that day, local authorities / mental health can choose toliterally drag them off to an institution..

@nitawhite1 @ja54kki ...which can be anything from a residential facility to a series of padded cells where they are fed through a hole in the door, and nobody cares. Sure, it’s fine because so many autistic people are living their best lives. But this is not the complete picture. If I showed a...

@nitawhite1 @ja54kki ...wealthy family living in a gorgeous home with a perfect life and said ‘this is life in Britain’ I’d have my face ripped off. But it’s not a lie. I’ve just chosen not to show the other extreme, the woman living in a doorway with a cardboard duvet who hasn’t eaten in days...

@nitawhite1 @ja54kki ...And that’s the problem. Whatever imagery we show of autistic people, however we explain it, we will never be sharing anywhere near the whole story. The parents of those young people have probably enjoyed many holidays with them, and regularly get a night out as a couple...

@nitawhite1 @ja54kki ...if I told you that 2 weeks ago my wife and I had our first evening out in 2 years (2 hrs at local pub) and that we’ve not had a holiday since Ben was born (hes 17 this year), or that an evening out took days of planning arranging for two personal assistants to be able to be...

@nitawhite1 @ja54kki ...here for the same session, and that it often ‘goes wrong’ and we’ve had to cancel maybe a dozen attempts at visiting the local pub for complex reasons or a PA being unable to attend...or that a night out costs £30 per hour in fees to his PAs and that as Ben’s full time Carer..

@nitawhite1 @ja54kki ...I’m unable to work and rely on Carers Allowance of £64.60 a week, or that I’ll never be able to take a holiday even a night off is just impossible, or that my caring role has quite literally given me severe mental health issues, that Ben will need 2 to 1 care 24/7/365 for...

@nitawhite1 @ja54kki for the rest of his [hooefully long] life, but that govt cuts make funding that care so challenging he may end up locked away somewhere, and that as the only people he will eat or drink off are us - his parents (he’s never done either for anyone else or outside of the home)...

@nitawhite1 @ja54kki ...so that locking him up, removing our care from his life would quite literally kill him (he’s been hospitalised three times with severe dehydration refusing to drink he has the ability to shut down) all to save money... does THAT show you why portraying autism as the same...

@nitawhite1 @ja54kki ...condition right across the spectrum is a seriously bad idea for everyone on the spectrum? Those young people don’t want me to wipe their bums, wash abd dress them do they? They want to live their best lives, and I don’t blame them. But they have the same condition as Ben in...

@nitawhite1 @ja54kki ...the same way that someone with a nasty little mole that is cancerous has the same condition as my sister in law who has cancer in every part of her body and it’s now attacking her brain and leaving her just waiting to die without any hope of anything other than pain relief...

@nitawhite1 @ja54kki ...Sure I’d not want skin cancer but chances are it can be treated, obviously not always but caught early and in one small area there is a good chance of survival. My point is obvious hopefully, the two don’t compare. They both have the same name though. Autism being a huge...

@nitawhite1 @ja54kki ...spectrum is a serious problem, you can’t speak out for anyone at any point on that spectrum without someone attacking you. If I speak about my son I’m told off by people at opposite end of the spectrum, I cant speak for all autistic people (I only ever speak for my 3 kids)...

@nitawhite1 @ja54kki ...who are all ‘on the spectrum’, and if I say Ben’s needs are severe or that he’s low functioning I’m somehow belittling people at the other end of the spectrum making them out to have less needs or be less autistic. To deny this shows a simple lack of understanding of autism...

@nitawhite1 @ja54kki ...to think it’s not an issue shows you have no idea about the needs of so many autistic people. We need different names, as we do for other things - cars have different names, they are all cars but so many different types. Try describing your car without making out its any...

@nitawhite1 @ja54kki ...different to any other car - it’s just not possible is it. You’d use the colour, the size, the features. DESCRIPTORS. But we can’t use descriptors to clarify people’s point in the spectrum as it’s offensive. So yea. That’s my life. Who wants to swap? #Autism

@nitawhite1 @ja54kki Hey @threadreaderapp please unroll