I have just been diagnosed HFA after a long fight to get that, I am finding delays in my accessing support and treatment.
I am having a battle accessing relevant specialists to access related conditions - for example when spoke about visual problems I was told I do not have a visual problem (I am going to optometry clinic at University to get round that). I have had my gastro problems ignored and been patronised for it (I have conntacted the Autism research centre at Sunderland about this). My doctor is trying to get me into the community mental health team.
I want my needs assessed. Only good thing is an ENT specialist referred me to Hyper-acusis (got round 2 years of my GP refusing to send me to Audiology).
I had a doctor sit a week on a referral to neurology to investigate possible seizures (in fact my complaints to that got ignored by mental health before my diagnosis).
I believe I should be able to get a person centred care plan and health action plan.
My GP told me to arrange my own social worker, I got a very unhelpful approach from both Mental health (who said my GP must arrange a social worker and they have no specialism in ASD) and had the most abusive patronising demining response from Learning disability basically the not Learning disabled/not critical response.
In the mean time I am losing the plot and going down hill without adequate support. Everyday I am losing confidence and skills, I am off work and too scared to go back. I am living in an intolerable enviroment (one of the main reason's I am unable to function at home or work) and getting abuse from my foreign housemates.
I was not lucky, I had to fight to get referred to the only (as far as I am aware, think there is one in Liverpool and Sheffield) specialist clinic set up for specifically diagnosing adults and it was on my door step. I only got referred when my family agreed to pay the £1000 costs, which after my referral they got funding and it was free). I have been referred to neurology now (as of yesterday), I wanted to get away from pychiatrists. I am being investigated for seizures.
I have been disgusted by the treatment I have got and also by the stories I have heard from other's. I went to my MP David Howarth and he said he would have a chat with Simon Baren-Cohen. I have filled out the NAT website campaigns and also their survery on adult experience. I think the issue of support is coming up in parliament again and the government (supposedly) is taking this serious. Latest figures suggest 1 in 100 have ASD's.
Since I posted I found the department of health webpage which was really helpful.
My advocate is helping me with my health now, he has suggested (did it with another of his ASD clients) that we arrange a meeting with my health care professionals. This will be used to explain how my ASD affects me.
Its all about money as much as lack of understanding.
Thanks yes you did come across a little harsh. Unfortunately the only way to get anywhere is to fight. I know that too well, also work around the system, do enough self improvement but hell you cannot self improve epilepsy, the very fact my GP sat on the referral for two weeks is enough, the fact that my Pychiatrist ignored my complaints.
What you said about the real rainman, you hit the nail on the head there, I watched the documentary and something hit home with that. I have a hell a lot of interests can absorb information like a sponge, I seem to do similiar stuff to him (but not to same extent in factual information). I seem to able to do what he cannot better, I swear my left side of my brain does not connect properly with the right. It was real spokey watching that, it got me all excited.
Its like I have an encyloapedia I cannot easily access, someone will say something and I will be like I know about that... full of useful and useless and seemingly useless information. Also have a habit of remembering things people say word for word. When I get close to people my brain takes a full pychiatric history, kind of threaky, I know for sure I am using a lot more of my brain than your typical NT. Excellent long term memory, kind of like an elephant! I read just about anything and absord it, even shampoo bottles, I read my mum's midwifery books, dictonaries, phone books as a kid often for no apparent reason. I was delayed in speech until 4, spent a time in South African pre-school (they do not teach kids reading, writing until age 6) but when I returned to England I took to reading very quickly and well. I loved reading. At the moment I am having trouble reading thinks a concentration and auditory thing, I seem okay to absorb 3 magazines in the doctor's surgery whilst listening to my mp3 player. Just not relaxed enough to sit with a book at home, too much distraction.
There goes again I am smelling things that are not there again. Either that or my pc is over heating. Damn I have no one to check whether I am smelling what ever I am smelling. Did it at work, my colleague could not smell what I thought I smelt. Maybe I need a bath!
Lol you are not hyjacking anything, you are much more aware of yourself than I am but you say things that make sense to me which is really helpful.
I have weird smells, with onset of panic feelings (like before an exam mostly in stomach) and sometimes sicky feeling, get supper sensitive to noise then. I have had it where I cannot listen to my music without getting panicy. These episodes can be followed by an inability to get to sleep... had that last night, had a sudden painful cramp all down my right arm. I am getting these more often at moment, usually in the evening. I am due my period soon.
I have always had to listen to music to study/read, usually to shut out other distractions and it helps me process information. Like you my mp3 player is my essential gadget. At home I sit at the pc with headphones on listening to i-tunes, yahoo music I like that, can choose what ever to suit my mood, I like the magic radio when I need to relax, when I want feel good stuff I listen to r n b. I think this to do with visual and auditory processing, the glasses are meant to hold a similiar purpose.
Do what is natural and feel's right. Like in the summer I may be hot but cannot sleep without something heavy on me, so I like a sheet/blanket/throw combi, usully ends up on the floor but its a comfort thing. I love candle light and a bath (can't bathe at mo though well not alone anyway, shame I ain't got a hot gorg bloke to help me on that - one that good with his hands - like my ex - talking about massage - ) I hypo sensitive tactile defensive ???? Actually really like touch, but then I don't like people touching my face, must wear comfortable clothes. I am one confused mess of senses.
I meant exactly what you answered, it takes alongtime to understand yourself. Saying that before I just got on even with the freaky things I did, the yo-yo heating thing (that can be annoyance to anyone I have lived with! My whole family the same, but not in sink - can you imagine the arguments - same goes with noise too!).
I am learning to live with it and trying to get on with my life. I am going to an asperger's support group after easter which should be an eye opener.
I was thinking of getting some direction in my career perhaps training in occupational therapy or working with youngster's with ASD's. I am more than keen to understand myself. At the moment I keywork a guy with Autism who is non-verbal. I am off sick at the moment and on popping in to sign my timesheet, I saw in the meeting minutes they are looking for someone else to keywork him. This suprises me, like they have written me off already. There is a designated person who takes over the keyworking of the person who is off sick until they return.
No that person is not away, wait and see what happen's when I have my sickness meeting. I have a good advocate. I love to get out there and get another job just not got the confidence right now. I hope the support group brings me out of myself a bit and ups my confidence. It hard being at work with people who used to my friends, its like being caught in my shadow. I see people interacting normally and feel like a that fish trapped in the goldfish bowl. I have been told I used to be fun and now I have got boring! Nice way to put getting your intelligence back.
I will see, I have loads of idea's about career's, to be honest just being happy with some good friends around me, maybe finding a decent bloke and settling down is what I need. Time to grown up.
As for the accessing health support, it will get there, its early days I guess. Things will get right.
On a good note, I borrowed my friends blue sunglasses whilst we were in the beer garden. They had the affect of making me feel calmer and the noise that had been bothering me went down a few notches, not bad. Only worked outside, indoors I could not see!