Autistic Adults - Why We Should Worry
My friend's son has autism.
He never sleeps or at least not for any length of time and she is exhausted.
Over the years sleep deprivation has been a real problem and the only time she gets any rest is when he goes to respite care. Even then she admits to spending the whole of her waking hours thinking and worrying about him.
Quality time is something neither she nor any of the other family members get to enjoy and the strain is beginning to show.
However, she is according to the latest reports, one of the lucky ones. It seems that two thirds of families with members who have special needs get no help at all and that 8 out of 10 of them are at breaking point.
Unless you are in such a situation you cannot appreciate the difference just a few hours of being able to lead a normal "ordinary" life can mean. It's often the only thing that keeps families going - the difference between them being able to cope or not.
Unfortunately, however, the money and support pot is only so large and as situations change so do services. Just as they can be given, equally they can be taken away and anyone who receives respite lives in the shadow of regular assessments and reviews.
Part of you wants your child to improve and the other half doesn't because you know you risk losing what little help you may get.
In an ideal world there would be help for everyone who needs it but there isn't and unless you can build up your own support network many families struggle.
My friend's son can legally leave school this summer. He wants to go on to college with an autistic unit and do a Life Skills course. He can and most probably will do so with support. He'll also be entitled to transport there and back.
However, once he reaches nineteen everything will change.
My friend has worked incredibly hard to get her son where he is today. If you knew him as a toddler you would never have believed he'd achieve so much. His bad behaviour is under control although he can still say some hurtful things and in school he achieves Level 2 in all his lessons. This is, infact the level one would expect from primary school children but never the less it is a great achievement and proves he can learn when he is taught.
Outside of school he is inept in many areas and couldn't possibly be left on his own. He needs to be in a supported environment with people who understand his needs and are prepared to make allowances for him. That's the problem.
Through the years of determined effort his disability is now termed "higher functioning autism" and my friend has been told as her son no longer has severe behavioural problems or a severe learning disability it is unlikely he will receive any funded support once he leaves college.
What's she supposed to do?
Autism is on the increase and all these autistic children will grow up into autistic adults. They'll all have to leave school eventually so where will they go and what will they do? Apparently only 2% actually get "employed", some spend a few days at day care centres or in social enterprises but what about the others?
And of course, that's just for autism. There are a lot of adults with other disabilities too. You do see some as trolley pushers of shelf stackers in supermarkets but have you ever seen one working as a cashier? I haven't.
In UK this week it was announced that a company established specifically to employ disabled people around the country is reducing its factories by half. Seemingly the government is cutting funding and thus the workforce has to be reduced. If that is the case then it's very short sighted.
If these people can't go out to work in a suitable environment then they will have to stay at home. Someone, usually a family member, will have to look after them which in turn means that they can't go out to work either.
Unless rapid changes are made there's going to be a lot more people staying at home because in recent years there has been an autism epidemic.
It's a major worry and not just financially. Being bored, broke and undervalued is not a happy combination for anyone yet alone someone with a recognised disability.
My friend is worried and so am I.
My son has autism!
He never sleeps or at least not for any length of time and she is exhausted.
Over the years sleep deprivation has been a real problem and the only time she gets any rest is when he goes to respite care. Even then she admits to spending the whole of her waking hours thinking and worrying about him.
Quality time is something neither she nor any of the other family members get to enjoy and the strain is beginning to show.
However, she is according to the latest reports, one of the lucky ones. It seems that two thirds of families with members who have special needs get no help at all and that 8 out of 10 of them are at breaking point.
Unless you are in such a situation you cannot appreciate the difference just a few hours of being able to lead a normal "ordinary" life can mean. It's often the only thing that keeps families going - the difference between them being able to cope or not.
Unfortunately, however, the money and support pot is only so large and as situations change so do services. Just as they can be given, equally they can be taken away and anyone who receives respite lives in the shadow of regular assessments and reviews.
Part of you wants your child to improve and the other half doesn't because you know you risk losing what little help you may get.
In an ideal world there would be help for everyone who needs it but there isn't and unless you can build up your own support network many families struggle.
My friend's son can legally leave school this summer. He wants to go on to college with an autistic unit and do a Life Skills course. He can and most probably will do so with support. He'll also be entitled to transport there and back.
However, once he reaches nineteen everything will change.
My friend has worked incredibly hard to get her son where he is today. If you knew him as a toddler you would never have believed he'd achieve so much. His bad behaviour is under control although he can still say some hurtful things and in school he achieves Level 2 in all his lessons. This is, infact the level one would expect from primary school children but never the less it is a great achievement and proves he can learn when he is taught.
Outside of school he is inept in many areas and couldn't possibly be left on his own. He needs to be in a supported environment with people who understand his needs and are prepared to make allowances for him. That's the problem.
Through the years of determined effort his disability is now termed "higher functioning autism" and my friend has been told as her son no longer has severe behavioural problems or a severe learning disability it is unlikely he will receive any funded support once he leaves college.
What's she supposed to do?
Autism is on the increase and all these autistic children will grow up into autistic adults. They'll all have to leave school eventually so where will they go and what will they do? Apparently only 2% actually get "employed", some spend a few days at day care centres or in social enterprises but what about the others?
And of course, that's just for autism. There are a lot of adults with other disabilities too. You do see some as trolley pushers of shelf stackers in supermarkets but have you ever seen one working as a cashier? I haven't.
In UK this week it was announced that a company established specifically to employ disabled people around the country is reducing its factories by half. Seemingly the government is cutting funding and thus the workforce has to be reduced. If that is the case then it's very short sighted.
If these people can't go out to work in a suitable environment then they will have to stay at home. Someone, usually a family member, will have to look after them which in turn means that they can't go out to work either.
Unless rapid changes are made there's going to be a lot more people staying at home because in recent years there has been an autism epidemic.
It's a major worry and not just financially. Being bored, broke and undervalued is not a happy combination for anyone yet alone someone with a recognised disability.
My friend is worried and so am I.
My son has autism!
Jean Shaw is the author of I'm Not Naughty - I'm Autistic and Autism, Amalgam and Mehttp://www.jeanshaw.com
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