My article in Community Care Magazine, on 28/8/03, not much has changed then
in over two years since I wrote this article for neurodiverse?ASD's
individuals, as it???
Yours
Colin
Tailor services to the condition
Posted: 28 August 2003 | Subscribe Online
Professionals are not listening to people with autistic spectrum disorders,
many of whom fall through the gap between mental health and learning
difficulties services. So much money is being wasted on procedures and
policies that only pay lip service to involving people without really doing
it.
I am particularly concerned that those with autistic spectrum disorders are
not being given the information they need to make informed decisions. One of
the areas where this happens is with substances in the diet and toxins in
the environment that can make conditions like autism worse - for example
mercury fillings.
But if you want your fillings removed - even if the dentist wants to take
them out - you have to get a hospital consultant to approve it, unlike other
people.
Another issue is that a lot of people on the autistic spectrum want to avoid
powerful drugs and try alternative treatments, but again the professionals
don't want to know. The drug companies are there to sell drugs and the
psychiatrists are only too happy to resort to a chemical cosh. Then if you
want to challenge what has happened to you, disabled people face huge
hurdles trying to access the legal system and the confusing NHS and social
services complaints procedures.
Even when you think you have made progress things don't work out. Look at
direct payments. People with autistic spectrum disorders are being forced
into institutional care, or in my case no care, because the direct payments
initiative is not happening for them.
I was one of those who fought for direct payments but we are fighting a
losing battle to make the system work. I was diagnosed with dyspraxia in
1968 and my life has felt like a battle ever since. I also have Asperger's
syndrome, Irlen syndrome and attention deficit disorder. I've had to fight
to get appropriate diagnoses and a specialist care plan to meet my assessed
needs, but it's no use having a care plan if you cannot find properly
qualified staff to deliver the services you need - which you can't for just
£6 an hour.
Those with autistic spectrum disorders have "hidden impairments", they do
not fit into the narrow eligibility criteria and are being misdiagnosed with
personality disorders and mental ill health/distress, and then given no, or
inappropriate, treatments and therapies.
Something needs to change - when will those in positions of authority
understand the real meaning of the term "power with" as opposed to "power
over"?
Colin Revell is a disability rights activist.
http://www.communitycare.co.uk/Articles/2003/08/28/41913/Tailor+services+to+the+condition.html
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