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balletnerd
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11 Apr 2012, 12:33 pm

Hi I'm new to this forum.

Had a formal diagnoses of dyslexia (sorry about some spelling errers - I can't find spellcheck here) and at the sme time the psycholigist said suspected Aspergers too especially from details re my childhood.

I hope I am okay to join not having had formal diagnosis of Aspergers. I want to ask some quetions about whether it is worth me getting a formal diagnosis. I went to my GP like I was advised to (I live in England) and she said that due to resourcing issues they can only send people who are sturggling with independent living i.e. very obviously impaired. She didnt just make a pat judgment of whether she thought i had the condition or not but said i had to go private.

Now my issue with having the diagnosis for Aspergers is that compared to the dyslecia assement it is much more expensive and takes a lot longer. I am trying to weigh up whether i am

a) at least quite likely to have the condition
b) if I dont will the psycholigist be able to make an alternative diagnosis (i just know i do have something different about me which is more than just the dyslexia. i.e. if its a personality disorder or something like that maybe i could take some medication for it to sort me out.)
c) what difference does the diagnosis actually make if you are relatively high functioning?

Some days I feel "normal" other days, other days i dont.
I'm 35 years old but I'm always mistaken for someone much younger and not just on account of youthful appearence. I'm socially gauch and just have a tendency (without trying) to p*ss people off. On my bad days I feel like I will never be normal and understand all the social contexts which are out there especialy relating to other women.

I like "childish" things like Legos (I collect the figures), cartoons etc. I'm really into sci-fi stuff and i like films like Ghostbusters and Labyrinth which Ive see nearly 100 times. I mostly talk about that and running and ballet which is about 98% my social life. I'm also obsessive about music and compile lists and catalogs and things like that. I'm not sure they will be things that I will ever "grow out" of although I know its part of what makes most other people think I'm really weird. The other part is that I have trouble expressing emotions appropriately and mostly its either OTT (there was a time when i lost my passport at a ferry port and I started hyperventilating and screaming) or not enough for other people (I've learnt that the words "oh" and "ok" are insufficent when someone tells you they are pregnant or getting married).

Sorry to ramble on, I know its not anyones business here to provide a diagnosis for me but just trying to think whether i would be wasting my time trying to get a diagnosis. I wonder sometime whether I'm just odd becuase I grew up with a schizophrenic mum and it can explain all the quirks.



Jtuk
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11 Apr 2012, 12:47 pm

I think your GP made a wrong call there, where do you live? Most local authorities have an autism policy, so you have a second route through social services.

I can understand your GP being adverse to referring you if it's not having any impact on your life. Visit your GP again, write up how you believe aspergers is affecting your life. Cost is not a justifiable reason. People who trouble living independently don't need a diagnosis either to access this help. You don't need a label to be a "vulnerable adult".

I wouldn't go private, if you need any state assistance or medication the NHS will not accept a private diagnosis. I fell into this trap with ADHD.

Get a second opinion.

Jason



balletnerd
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11 Apr 2012, 2:25 pm

Hi Jason,

I live in Wiltshire. I bet I would have had more help if I still lived in Bath - the GPs were a lot more helpful then (for other things).

I think the way I am has its primary impact at work where you wouldnt be able to get even the most basic job if you didnt say at the interview about how much you were a "people person" and how great and awesome all your "people skills" are. I like and care about other people but i just cant stop accidently causing upset to other people most weeks. Of course there are things like my temper as well.

Do you think it might help if I got my employers to write a statement for me? I wander if that would help?

I wasn't aware of the status of private diagnosis in that it isnt offically recognised so thanks for letting me know.



Wandering_Stranger
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11 Apr 2012, 2:47 pm

I was told by my GP that some PCTs don't think it's worth diagnosing some; unless for example, they're low functioning or are having serious issues. I was lucky that they have agreed to diagnose me.



questor
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11 Apr 2012, 4:44 pm

Hi Balletnerd! Welcome to Wrong Planet! All civilized folk are welcome here whether they are one of us or not. Check out the interesting and helpful forums and articles here.

From what you have described of yourself, it does sound like you may be on the Autism/Asperger's Syndrome spectrum, and more at the Asperger's end of it. Much of what you mentioned applies to me. I live in the USA, so I can't advice you on the route to take if you choose to go for a diagnosis. Whether you should or shouldn't really depends on whether you feel you might benefit from programs/therapies that would be covered by the government or insurance plans. To get them to pay you would need an official diagnosis. You do seem to indicate some problems at work that are caused by your differences. I suggest you go to the Wrong Planet Autism/Asperger's forum and look up one of the articles with links to online tests that you can take. Then, take the tests, and if the results indicate you are on the spectrum, print out several copies, both for your own records, and to give to doctors. Also, make a list of the problems you have at work, and anywhere else due to your differences, so you can show that to the GP, too, and insist on a referral to a psych doc with experience in spectrum disorders.

I am in my early 50s now, and self diagnosed through research and online testing. Also a relative who had come across Asperger's info on her own saw me in it, and contacted me, and told me she believes I have it. At that point I told her that I had also heard about and researched it, and come to the same conclusion on my own.

I have chosen not to get an official diagnosis. I don't need assistance with school programs, as I am not in school. I don't need assistance in work, as I am no longer able to work due to other health problems, and get gov benefits for them which enables me to pay my bills. I don't need assistance with romance issues, as I am a solitary person, and am not interested in having such a relationship with any one. Although I do have some problems keeping up with the chores and some other things, I do have relatives who help me out when they can, so I have a family support network. So, unless I can see some benefit in getting an official diagnosis, I will pass on that.

Getting an official diagnosis would require going to psych docs and therapists, which I would prefer to avoid. I was taken to many of them as a child and teen because of my Asperger's. Unfortunately, spectrum disorders were not recognized as such back then. Instead we were diagnosed as having emotional/behavioral problems, and/or being a discipline problem. The problems caused by our misdiagnosed condition were mistakenly believed to be fixable. Spectrum disorders are neurologically based. Therapy and drugs can help in some cases, and some of us are able to "outgrow" or modify some of our problems enough to get along better in the world, but there is no cure for the condition. Unfortunately, this was not known when I was young, so when the treatments did not result in our being "fixed", we were believed to be not cooperating with the treatments, and thus were considered to be more of a discipline problem. Needless to say, I did not enjoy going to therapy that didn't work, and then being given a hard time for not being "fixed". Naturally, it was felt that I was fighting the treatments. I didn't have the words then to explain my problems, any more than the psych docs and therapists could. Also, the drugs I was put on didn't help at all and had unpleasant side effects. So, I ended up with an aversion to psych docs/therapists and to psych drugs. With that in mind, I intend to avoid any further psych help unless it is unavoidable.

Now, decades later, spectrum disorders are recognized as what they are, and there are some treatments available. There is some help out there for kids, workers, people with relationship issues, and people having trouble managing on their own. So, people who want to seek it out should have a go at it. Since you do seem to have some work issues this would apply to you, too. So give those online tests a whirl, and take them to your GP! :D And remember, you are among friends at WP! :D


_________________
If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.
Let him step to the music which he hears, however measured, or far away.--Henry David Thoreau


Jtuk
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11 Apr 2012, 4:47 pm

It's pretty much law that they have to offer this service, you might have to convince them though. It would help if you had some solid difficulties that you cold describe.

google: autism+strategy+Wiltshire

it might be worth emailing the person in the local authority who wrote the strategy, There is often an adult ASD coordinator, it's their job to deal with this and they might be able to help you. Social services do have the ability to ask for a referral.

Jason.



Jtuk
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13 Apr 2012, 2:06 pm

oh I came across this great 2 pager from the autism society to give to your GP:

http://www.nhs.uk/ipgmedia/national/the ... ndrome.pdf

Note how it is endorsed by the NHS.

Jason