One reason, in the USA, why adult services suck is that there are hundreds of advisory boards for disabilities and only a handful with even one of our peers on it. The result is that when policy is made, it is made on behalf of disabilities who are represented on the groups that provide most of the input.
You can't change this unless you get involved.
Jerry Newport
Thanks Wolfy, I have been at a bit of a loss here in NZ. I mailed Tony Attwood in OZ but have no reply. I have received information from a fellow aspie in Auckland who wrote a book. The place i live is a long way, both spatially and informationally from knowing anything about AS and diagnosing accurately. It seems if you are female here you get BPD and if you are male you get some other silly DSM crap. I have not met anyone who received such a designation feeling thankful about it.
I wonder if its alright if i use your letter to base one of my own on to send off to see what happens?
We have to remember tho, diagnoses are a double edged sword and that so long as we know what we are and are not we are acceptable.
becca
Have you folks contacted your aspie member of the NAS board about this? Larry Arnold is certainly not afraid to stand up for us.
Jerry Newport
USA
For those of us with Asperger's, when we were growing up, nobody knew about the condition, just the classic low-functioning autism. Right now, there's a class-action lawsuit against the local Regional Center because they don't provide services for people with Asperger's even though other organizations do have services. Most of those involved in that lawsuit are parents whose kids are Aspie.
Exactly what kinds of services do the parents want to have provided?
Wolfy, have you read much about ADHD and alternative therapies for it? I've seen a couple of relevant articles in New Scientist and Scientific American recently.
In my reading I keep coming across two apparently contradictory "facts" about stimulant medication as used for AD/HD. One fact is that the drugs don't actually improve the academic performance or peer relationships of school kids diagnosed with AD/HD, it only makes them better-behaved in class. Apparently the lack of effectiveness for improving academic achievement is a well-established fact as it has been researched over and over again because the scientists expected to find the opposite result. The contradictory fact is that stimulants boost the powers of concentration of "normal" people and help them to stay on task longer. So I've got to wonder who is really benefiting from these drugs, and do the drugs actually address and fix the underlying problems of AD/HD, or are they just a band-aid solution, and a lifestyle drug for the use of people who don't really have AD/HD?
It's sad to see that there are so many obstacles stopping aspies who want to get an accurate diagnosis; uncooperative doctors, uncooperative parents, lack of resources, misdiagnosis, professional incompetence and apathy.
I guess many people assume that there is little or no need for diagnostic services for adults, as they assume that autistic people either remain very disabled or are cured by the over-promoted early interventions.
I guess that many people think it could not be possible to remain undiagnosed with autism to adulthood, because if you are genuinely autistic you can't talk or function, and would be unable to avoid being identified and/or institutionalised before adulthood.
I don't think there is enough awareness of the size of the problem of psychiatric misdiagnosis or underdiagnosis. If we want the issue of adult diagnosis to be taken seriously we need to do something about the level of ignorance that seems to exist.
I've had people say that I must have "overcome" autism and this is frustrating since it is still there and the sensory issues are worsening as I get older.
It would be great if the various people involved would realise that autism is a lifetime condition.