Hi there. I'm Matt. I'm 25 years old, from Mid Wales, and after 20+ years of seeing various psychologists, psychiatrists, councillors, specialists, etc, etc, I've recently been diagnosed with Asperger's Syndrome.
ASD was first indicated to my mother when I was 5, and again when I was 16. Neither indication resulted in diagnosis. In summer 2013, after 20 odd years of suffering the meandering and ineffective beurocracy of the NHS to no avail, I had a huge meltdown and told my GP in no uncertain terms that if I did not receive some level of help with a degree of urgency I would likely kill myself. I was scared, bitter, angry, depressed, extremely anxious, not eating or sleeping properly, incapable of maintaining even a vague sense of structure in any area of my life, etc, etc; I was at "wit's end" (or however you say it).
A handful of months later, I was diagnosed with ASD (Asperger's Syndrome under the "old regime").
I've come to this forum for a number of reasons:
Firstly, there's a huge lack of support in my area for people suffering from an ASD. My own experience is, from what I've been led to believe, somewhat privaledged. I was up until recently seeing a psychologist every week, but the funding for her position - which was purely focused on diagnosis of and therapy for ASD - was cut. I have a social worker, but he's from the Learning Disabilities team at the local council and has made no secret of the fact that they are not mandated or equipped to support people suffering from an ASD effectively. Neither the LHA or the Local Council wants to, amidst swinging cuts to their budgets, take responsibility for providing frontline support and care for people suffering from autism. It feels to me like ignorance bordering on negligence, as I cannot for the life of me think why there would be such limited support for a category of disorder that effects more than 1 in 100 people in the UK. There is a local ASD Link Worker, but he works 20 hours a week and deals with around 1,500+ people diagnosed with ASD in the area. He has to make priorities... and I'm seemingly not a priority; I've seen him once, and have not seen or heard from him since. In April 2015 the Welsh Assembly will publish an "All Wales Strategy for Autistic Sprectrum Disorders" that will allocate responsibility (and funding) to deal with autism. Until then, I seemingly get little to no help at all.
Secondly, I want to move on with my life and have designs to study part-time for a degree in psychology. Easier said that done. I don't really know where to start with this, or whether I'll even be allowed to do it whilst claiming ESA/PIPs. And due to the aforementioned lack of support there is no one to turn to to help me make this ambition a reality. As far as I'm concerned, pursuing such am ambition coupled with some proper support to tackle my "daily living" deficits could put me on a path towards self-sufficiency and employment, and it's better than doing nothing at all (which is basically what I've been doing since I left home).
So anyway, hello! Hope I find at least some answers here.
