Please help!

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Part of the problem with getting the aspie diagnosis is there are no drugs that really target aspie problems. If you went in there and said...I am pretty sure that I am bipolar or depressed...wham!! you would get that diagnosis without a problem at all. See doctors get paid incentives from insurance companies to diagnose people with things like bipolar cause the insurance companies are in bed with big pharm. So you have to find someone who looks beyond the money and looks at you. The best way to find a good doctor is to take notice what kind of car they drive...if they drive and older model something...they are usually putting their patients first, but if their car is like some brank spankin new sports car...they are all about the money. It is sad that it all comes down to the money to whether or not you can get a diagnosis.
I know this seems not very aspie-ish to do...but have you ever thought about going to some other doctor and NOT make eye contact.

You may be able to get a referal from a medical doctor who does not have as much invested interest in not refering you. I dont know if you are in the UK or the US, but here in the US, a medical doctor can make a psych referal...it is worth a try.

The other thing you need to concider is if you know what is going on with you...what is a diagnosis going to achieve?? When you are a child it matters alot because of access to services and accomidations within the school system and early intervention. But as an adult, there are not that many services for those with ASD's to help us deal with our condition. I guess they think we all die at 18. My best advice is to educate yourself in ways that you can change your life to make coping easier. WP is a good place to learn how to cope better. However if you are in college or going to college then a diagnosis is important as well as a full neuropsych exam for accomidations that you will need.

best wishes, I hope sopmething I said would help.

Jojo
btw....welcome to wrongplanet

Hi everyone,

@Callista By the time I went to see that doctor I'd already spent hours and hours reading everything I could about AS and various comorbid conditions that the aspie quiz pointed out that I showed signs of. So I did know that what she spoke of was OCD, but I was so offended that I just couldn't speak up. The worst thing about it is that I do have repetitive behaviours.
For example, when I'm in the front seat of a car and can see through the windscreen I have to 'count' shadows on the road that are coming towards the car. In my head will be a constant litany of "right, wrong, right, wrong, right, wrong". For each "right" (which is the unshadowed parts) I will tap my right foot and move my jaw to the right. For each "wrong" (the shadowed parts) I will tap my left foot and move my jaw to the left. Depending on the speed of the car and how many shadowcasting objects we pass, the litany can get very very fast.
I don't know why I do it, but I HAVE to. I don't even realise when I start doing it. However once I do realise, it really infuriates me and I get so stressed and upset, but I can't stop then until I get out of the car
I really couldn't tell the doctor this though. I just felt that if she really thought it was silly and stupid then she'd just laugh at me.

@jojobean It really isn't fair, you'd think that people would go into the medical profession to actually help people, not just to line their own pockets.
I'm in England and I thought that I'd be able to get a referral from the doctor I saw (my GP) but when I asked for a referral to a specialist she told me that she couldn't do it. I can't remember exactly what she said, but she started going on about rules and red-tape and to be honest I just didn't understand her and zoned out. She said all she could do was to refer me to the local mental health team (MHT). I went along with it because I didn't know what else to do, and I figured seeing somebody was better than seeing nobody at all.

I really do want to go to college. I have tried 3 times and failed miserably each time. I have 2 main problems there aside from all the social ones. When given something to read in class, or as homework, I will sit and read the same sentence over and over again but no matter how hard I try, the words just won't go in! It's like I just can't understand what I'm reading, like it's gone from my head as soon as I look at the words. Other times the page just appears empty.
I do have this same problem with my favourite fiction books also. I absolutely love to read, but I have never read an entire book. Oh, I've read it from cover to cover, but there will be pages scattered throughout the book which I just can't read no matter how much I try.
The other problem I have is understanding what the teacher is saying. When they are stood up in front of the class, explaining things to everyone, they talk so quickly and I just can't keep up to understand. I will either focus on one little part of their speech and try to process it, whilst in the meantime missing everything else they say. Or I can try to listen to everything and not understand any of it, but because I don't understand it I get very bored and zone out therefore I don't hear any of it anyway.

Thankyou

Chelle
Xxx

Hi everyone,

@draelynn Thankyou for your suggestion, it had honestly never occurred to me to contact Dr Schakel's office directly! I just called and spoke to a really lovely, patient lady who told me all about their assessments and my options with regards to getting access to it. It seems that I CAN get a referral from my GP, although in her 4 years of working there she has never heard of anybody getting a referral from somebody as far away as me. I could pay and get assessed privately but it would cost £495 which I just cannot afford.
After that, I called the NAS helpline again and they told me about the Adult Autism Act, which apparently states that if there are no specialist diagnosticians locally, then the authorities must provide access to somebody outside the local area.
I'll see how things go with the OT and my friend's psychologist, and then go to see a different GP.

@psych thankyou for explaining the labelling thing to me, it was really frustrating me to keep hearing people say it to me but to not understand why it was such a big thing to them. I still don't understand completely, but your explanation has made it much clearer for me

Thankyou

Chelle
Xxx

Hi Chelle,

Sorry for taking so long to get back to you. PCT stands for Primary Care Trust. Your PCT is responsible for commissioning the health services you require from your local hospital. If the PCT does not have a particular specialisim that you require then it should refer you out-of-area to a PCT that does. They don't want to do this, however, because it costs them money. This is because when it pays for local services, the money stays in the PCT's budget. When the money is spent outside the PCT, it is effectively lost.

The symptom you describe in respect of reading actually sounds like ADHD to me. I have an ADHD diagnosis and that was exactly my problem! The other symptom you describe of having difficulty understanding what someone is saying is also an ADHD symptom although I understand it is also an Asperger's symptom. ADHD and Asperger's can be comorbid too and there are other overlapping symptoms. I have been taking Concerta for a few months which helps tremendously with the focus/concentration problem and mind wandering/zoning out.

I am actually in the process of complaining to my PCT about not being referred out-of-area too. You should get in touch with an advocacy organisation which will help you with your complaint. I am using PohWER. Just search for them. They will help you write your complaint and guide you through the process. They will even accompany you to meetings with the PCT which is invaluable for me as I don't have anyone close who can help me and I'm doing this on my own.

Good luck with it. It's unfortunate but the only way to get the treatment you need is to become an effective complainer and make them do their duty.

Hi everyone!

First of all I want to say thankyou to all who responded

I ended up going back to see the Occupational Therapist again despite not wanting to. It didn't go well... I ended up having a meltdown right there!
I won't be going back to see her again!

I do have some good news though. I went to see a different GP yesterday and I actually got him to agree to give me a referral for the specialist in Manchester! He said it all depends whether the local authorities will pay for it so I told him about the Adult Autism Act He assured me that he would do his best to get it sorted for me

Chelle

Wishing you the best of luck Chelle83.

The road to diagnosis as an adult in the UK is a long one from my experience. I have a very good GP who understands my situation but even so she is limited in what she can do. The NHS great though it is in many ways, is seriously hindered by a few "gate keepers" who control and grant access to resources. In my case this is a senior psychiatrist on my local mental health team who appears to be seriously uneducated about aspergers and treats everything as a behavioural or personality disorder. Because I turned down the CBT which was offered to me I have been left to fend for myself by his team. This is a great shame since there is a specialist Autism unit only a mile away from me to which I wished to be referred.

I still have a few options to follow up with my GP (reliant of funding from the PCT), otherwise it looks like privately funded will be the way to go for me.

Lastly, have you considered getting in touch with the National Autistic Society to see what they can advise?

I wish you all the luck as well.

I'm glad your new GP is willing to look at a referral for you to see Dr Schakel in Manchester, depending on NHS funding. She is the clinician who diagnosed me 3 months ago. I had to go privately as it would have taken the NHS approx 12 months to refer me and I needed a diagnosis quickly, as I was struggling at work.

There is now another clinician diagnosing in Sheffield, he's slightly cheaper at £369. If there is anyway you can beg or borrow the money to see him, I'd strongly recommend that. His email address is L dot Beardon at shu dot ac dot uk and he's the Senior Lecturer in Autism at Sheffield Hallam University.

I wonder if the reading problems you describe are more to do with Dyslexia. I have Dyslexia and your reading problems sounded exactly the same as mine. You can get a screening for Dyslexia (and Irlen Syndrome, common with ASCs) just search for white rose dyslexia, in Sheffield, on Google.

GP's in my experience, have little or no understsanding of Aspergers. As someone else mentioned, it's not part of the diagnostic criteria, most with AS will have eye contact problems - mine is that I stare, rather than looking away, so the fact that your GP said you have good eye contact is nonesense as it could be that like me, you're eye contact isn't natural, but you stare, more than look away. This doesn't mean you don't have Aspergers.

I have been in contact with a lovely lady called Elaine from Action for Aspergers (search for them on Google) her email address is elainenicholson at aol dot com (this site won't let me post the full email address and she Advocates on behalf of those struggling to get a diagnosis. Might be worth contacting her. Alternatively the NAS should be able to give you details of advocacy services in your area. Elaine reminds GPs they need to be applying the Autism Act 2009 and when she does, she seems to get good, positive results!

Good luck,
Acorn