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
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
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.