I think ive had a wrong diagnosis, HELP

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Help me please,

I Found out about aspergers about a year ago, I read about the symptoms and all about it on the internet and I was first shocked that it all matched me. I went to my doctor and asked for a diagnosis so she referred me ( a referal that took a year). A day before my appointment I got a phone call from a very apoligetic woman saying that my appointment has been cancelled and she will send me a letter when she can find me a new one. The new appointment was for next week and the whole week I was very anxious and confused about why the doctor and place had changed.

When I arrived at my new appointment the doctor said that he wasn't a specialist but he has met with people with aspergers and there was a woman in a room who said that she had a housemate once that had aspergers, they asked mequestions about school, what grades I got particularly in english (Gcse grade D) and they said that was good, after an hour he said that I had the symptoms of aspergers but they were "too soft" he said "I have not got Aspergers and the reason im like this is because I play video games and havn't had much social interactions, I gave him notes I prepared because i thought i would be too nervous to remember everything and he said that the eye contact and social shortcomings was because I play video games and this is a "epidemic in young people today that you are not getting enough social skills" he completely ignored the rest of the notes and symptoms. After I told them I really think that I do have aspergers and I have done a lot of research and I really need support, the woman in the room then said "can you read a book?" I asked what she meant and she said "If we handed you a book right now could you read it" I said yes so she said I don't have aspergers.

I am not satisfied and im really frustrated and distressed now, can aspergers not read books? Am I insane for thinking I have aspergers? I really think I do have aspergers and the more I read on Wrong Planet the more I think I do.

What do you think?

Do I try to forget about this or get a second diagnosis?

Thank you for reading

Alex

How old are you?

To be honest, it sounds like your parents may have called up and cancelled your official appointment and arranged a 'fake' appointment for you - they even told you they were not professionals (and "had a roommate"? that's just flakey).

I'm also looking at the fact that they harped on you about your video game playing as a cause for your concerns. This sounds staged. It's also not adressing the important issues like 'what makes you so sure it's Aspergers'.

i'm not the kind of person who looks for strange explinations like this, but know that my father one time pulled this on me when I had some severe stomach cramps that he didnt believe in.

I never did get properly treated and it was a month before the cramps actually stopped troubling me.

Call up the original doctor and ask them to tell you why you were denied your appointment.

Last edited by OddFiction on 07 Sep 2010, 3:44 pm, edited 1 time in total.

sorry im 20, they cancelled my appointment... i hope

Im in the UK so this is the NHS Im using (explains the year long wait)

That's highly unprofessional and they're mostly inaccurate. Did they even ask you anything about your childhood history?

They sound clueless. Most people with AS can read a book.

Get another appointment and a different opinion. From someone who actually knows what AS is and is qualified to make a diagnosis.

But, here is the thing ... do you really need someone else to confirm what you have figured out for yourself? If it fits to you, it is you. You only need someone else to label it if you are looking for services or disability support. Otherwise, you are free to label yourself and live accordingly.

ask for a second opinion, you are entitled to one, or ask a family member to lend you £500 to get a private diagnosis.

I have had 'profecionals' who are not experts in aspergers say I have not aspergers but am 'just troubled', lots of times but I do have aspergers and an asperger specialist diagnosed me and I meet all the criteria, I have a asperger AQ of 48 and EQ of 12, I definately have it. But profecionals often have a stereotyped view of aspergers and do not recognise it when they see it in front of them because one is not like the person they saw before. (for example patient 'bob' collects trains and wears a suit so because patient 'sam' collects anime and wears jeans 'sam' cant have aspergers as he doesnt 'look' like 'bob').

good luck on getting more help.

btw NAS does not require formal diagnosis to let you go to its groups or get help from them, nor does DLA.

they said that they wished they could talk to my mum to talk about my childhood and i said "she's just waiting in the car for me I can get her" then they said not to worry...

thank you for the replies you are making me feel better.

The other thing is that as long as you are convinced "something is different about you" and "affecting your life negatively" no true professional should give up so completely on you. They should be looking for other possibilities if they don't like the one you brought.

Incidently, I had to see three doctors and argue with them over my self diagnosis before getting any referrals from them. One promised me at the appoinment then changed his mind later. One got me an appointment to deal with my 'anxiety' (which is not really a problem) and it took the third to get an actual appointment with someone versed in AS.

Those so-called professionals seem to be very uneducated about AS. Most people with AS are able to read books.

I spent 14 years trying to get proper input for my daughter, all in vain. The NHS don't know their arses from their elbows when it comes to this kind of thing. I only found out that my daughter has Asperger's when we moved to a different country.

I suggest you read all about how to get a proper diagnosis on the National Autistic Society website. Here: http://www.autism.org.uk/About-autism/A ... dults.aspx

Do not give up until you are satisfied they have done a proper assessment. This doesn't mean you will necessarily get the answer you want, but you have to be happy that they have assessed you properly so that you can accept their findings.

I remember when my daughter had her assessments here, I said at the time that I was very worried they would say there was nothing wrong because this time whatever they said would be right.

Last edited by MotherKnowsBest on 07 Sep 2010, 4:29 pm, edited 1 time in total.

I've actually been trying to think of things that might rationalize their possible view of people with Asperger's not being able to read books.

These are completely false, obviously, but I'm going off stereotypes or misinterpretations or generalizations.

1. Someone with Asperger's wouldn't be able to read fiction.
2. Someone with Asperger's would require certain conditions to be met to read the book. (more reminiscent of OCD.)
3. Someone with Asperger's would only read books related to their interest.
4. Someone with Asperger's would only read books they're already familiar with.
5. Someone with Asperger's wouldn't be able to read in the environment you were in (presumably people = noisy)

...I'm running out of ideas.

Yeah I thought it must be this

Then they really don't know what they're talking about. One of my main interests is fiction book-reading.

That's stupid, there's nothing about Asperger's that would make someone illiterate unless they also have some other disorder or just haven't learned to read. Some of us don't like reading fiction or reading things that are uninteresting - but there's a huge difference between not liking and not being able to read a book.
They sound very ignorant - honestly, if that is their level of understanding AS, their opinion isn't worth paying attention to.

Yes. I would have thought that reading fiction - especially first-person stories - would actually help people with AS to understand other people's minds. If you cannot guess what others are thinking, a book which spelled it all out for you might actually be informative ("A-a-a-ah, so that's what they are thinking...") Books might let you into other people's minds when your own skills at reading other people are poor.

I'm not being funny but on NHS they usually make you do a psychometric assessment which will pretty much prove that you have Aspergers... Most people have a fairly common pattern of ability and inability and if you get a real assessment they will diagnose you as far as they can diagnose you which is never conclusive as such anyway because aspergers is basically a cluster of traits. Try to get a real assessment xxx