Please help!

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Hi everyone,

I signed up to this forum a few weeks ago but only now have I managed to work up the courage to post.

I'm 28 years old and have always felt like I was different from everyone else. A few months ago, I met a woman who told me that she was diagnosed aspie last year. I'd heard of it but didn't know what it was. I didn't want to unintentionally offend her in any way by asking questions so I went online to research it. The more I read, the more I felt like it was describing me. I went on to do the 3 quotient tests and the aspie quiz.

AQ - 41
EQ - 16
SQ - 43
Aspie - 166/200

I really hate going to see the doctor and it took me a while to work up the guts to go. When I did go, I went alone and the doctor was unbelievably ignorant. She basically told me that I was being ridiculous and that I was depressed. She told me that there's no way I'm an aspie because ALL aspies have silly repetitive behaviour such as when leaving the house they have to spin round on the spot and slap their forehead three times!! ! OMG! I was too shocked and offended to even speak, i just needed to get out of there.
The doctor gave me a depression assessment sheet to fill in and was told to come back 2 weeks later.

I went back, forms completed, with my 2 friends to support me and armed with all of my test results and a 5 page handwritten list of all my 'traits' which I think support my belief that I'm aspie.
Although she admitted that she didn't think I'm depressed now, she still laughed at me when I showed her the info I'd brought along. She said there's no way I'm an aspie because she finds me to be a warm person with good eye contact.
At this, I just completely exploded. I shouted at her that yes, it may SEEM like I give eye contact, but I actually never do. I look at a person's right cheek or actually stare right through them so that they are all blurry. At that point, my friends took over as I couldn't carry on. My aspie friend told the doctor about her diagnosis and her mouth hung open and she suddenly went silent. She started stumbling over her words, and asked me what I wanted from her.
I said I wanted a referral to an adult aspergers specialist, of which there are only 2 within 100 miles. I specifically asked to see Hildegard Schakel in Mancheater, but she told me that she can't give me a referral to either of them but she may be able to get me an appointment to see the local Mental Health Team.

I finally got my appointment last week and went to see them yesterday. It turns out that I'd been referred to a Occupational Therapist and not a psychologist. Straight away she told me that she cannot assess me or give a diagnosis, and that what she can do is work out solutions to any problems that I have.
I showed her my handwritten list, and she went through saying exactly why each trait does not show I'm aspie. She said she doesn't believe that I'm aspie because I give good eye contact. I'd already explained on my list about the eye contact but explained to her anyway, and still she insisted that my eye contact is good.
I knew I wasn't going to get anywhere with her so I just started agreeing with everything she said and smiling.
I have another appointment with her next thursday but I feel so thoroughly dismissed and stupid that I really don't want to go. She wants to work on methods to help me to sleep next week.

I just don't know what to do. I want to just curl up and cry, or scream at her to listen to me.
I am so sorry for such a long post, I did try to keep it short but I felt everything needed saying.
Please, can any of you give me any advice on what to do?

Xxx

Don't mess about: write a letter of complaint to the Chief Executive of your PCT and copy it to your MP. Try and keep it short, i.e. ideally two pages but no more than three. Emphasise the detrimental effects Asperger's is having on your life and that you need specialist diagnosis and support. There are advocacy groups which can help with this, e.g. PohWER. Fingers crossed.

Hi Chelle83,

I've had much the same experience & am nearly 50. The shrinks (arguing with me) just tell me I'm depressed &/or bi-polar (without any testing within 5 minutes of speaking with me), that I couldn't possibly have AS, & that people *my age* just don't have it as it's a childs'/teens' disorder. I've given up trying to talk to them as they really don't have a clue what it is or how it manifests. Looking back on my life, I've always always always had a special interest. It was just who I was/am even today. It's changed some as I've sort of learned to get along for a while, but I can never completely hide it because AS will always will make itself kinown. People generally tend to think I'm a freak due to my lack of social skills. I am a bookworm & that was my first interest at the age of 3. I have an extensive book collection on photography, & even if I find a book that is similar to ones already at home, I just cannot resist getting a new one. I also find it much easier to learn about stuff through books, though the internet has fast become another place for me to glean information. I am an information junkie (a walking encyclopedia on my special interests)! I know what I know....what I've found is that AS has become another special interest for me & the shrinks just don't share in that knowledge. I guess I need to start grilling them on what they know or don't about Aspergers. I have a new appt coming up with my 4th or 5th different shrink in as many years. We'll see how this pans out.

Oh & one more thing...I'm adopted & my adopted dad who's in his 80s most likely also has Aspergers (classic male symptoms: lack of eye contact, special interests, no ability for small talk, etc). AS has most likely been around long before it had a name. Perhaps some of the world's greatest composers or artists or inventors could have had it. Since they are all long gone, we'll never know if they had it or not. Still, shrinks do need to be more open-minded & listen to patients. I resent it when a doctor (any btw) who thinks they know more about me than I do. Hello! I live in this body with this mind, & it's not like I just took possession of it.

Tomboy

Since an Occupational Therapist is not a diagnostician, she is overstepping her mandate in even discussing your potential diagnosis. It is not her place to make a diagnosis.

Don't give up. Even if you are not found to have Asperger's, getting a competent diagnostician to work up an accurate diagnosis can really help you. Special emphasis on the words "competent" and "accurate".

Not that I can tell you what your next step towards diagnosis should be, but it seems to me from what you've said that these so-called 'professionals' are idiots. You need to keep searching for a shrink who specializes in diagnosis/treatment of AS in adults. But I think you already knew that.

Don't give up!

I was misdiagnosed multiple times before finding the correct diagnostician. It's highly stressful and demoralizing to be labelled with a half-dozen wrong diagnoses before being given the correct one finally. This may make you feel like giving up. It may make you feel angry, helpless, and dismissed. Try and get as much moral support as you can to keep on after it. Whether that means from friends/family or posting here.

I think one of the biggest issues we have is that Aspergers does not manifest itself the same way in all of us. When my son was diagnosed we were told that there are 15 traits and you need to have three to be an aspie. He only exhibits four. Same with myself (undiagnosed but obvious). Almost no one exhibits more than 10. We're still aspies even if it is not as obvious in us as it is in others. I have learned many coping mechanisms along the way and am relatively successful but I still struggle horribly with some things. I personally am uninterested in being diagnosed. My goal is to understand and educate myself and others around me. I don't need the label. I just need the knowledge.

Hi everyone,

Thankyou all so much for the replies, it's very much appreciated!

@vofc - what is PCT?

@tomboy4good - I was actually diagnosed with depression at age 13 when I self-harmed and attempted suicide. I was prescribed Prozac but it didn't change anything for me whatsoever. However because I knew that the psychologist, cognitive therapist and everyone else were expecting me to feel better, I went along with that and pretended that I really was feeling better. I learnt to smile even when I really didn't want to, I forced intonation into my voice and generally tried to 'prove' that I was happy. I thought that if they really thought I needed medication but it wasn't working then I must be some kind of freak, that maybe I was just crazy and that if they realised this then they'd take me away from my home and lock me away.
I must have had hundreds of special interests over the years. When I develop these fascinations, I get intensely absorbed in them very very quickly. When I was a kid I remember obsessing over dinosaurs, astronomy, electronics (I'd take things apart just to see how they worked and what they looked like inside), but they never seemed to last very long. However I do have some interests that have continued to this day: computer games, reading Dean Koontz books, hand-making costumes for my daughter, and Star Wars (I have a massive collection of figures and ships). If I see something online that I really want, then I usually buy it, otherwise I just cannot stop thinking about it until I do buy it.

I've been reading quite a bit on here recently, and it strikes me how badly alot of people here have been treated by supposed medical professionals. What really really gets to me is when people, doctors included, go on about not 'labelling' myself. I really don't get it. What is so bad about a label if it is accurate?! Obviously if a label is used in a derogatory way by somebody, then that is bad. However for me, being diagnosed would mean being able to finally understand myself and my past and to get access to the help and support I need to work through my difficulties to try to improve my social skills, go to college (successfully) and be able to hold down a job for longer than a couple of months!

Ooops! I just noticed how long this reply is! I'll respopnd to everybody else later when I get back from swimming!

Thankyou all again

Chelle
Xxx

My experience is that you should never try to get professionals to agree with your self diagnosis. It sets up a power struggle and guess who has more power? You need to gently lead them to the diagnosis by "innocently" dropping hints that will let them feel they have discovered the basis of your problem all by themselves. This may include accepting a misdiagnosis, then quietly but persistently complaining of symptoms or experiences that clearly don't fit it. It's unfortunate that you sometimes have to treat professionals this way, but it's a good reminder that they are just people with the usual helping of human failings. And speaking of human failings, try to be open to the possibility that you, too, may be mistaken.

Ok, I talked to my aspie friend and her mum earlier. She was diagnosed last year after a long, drawn out battle with several misdiagnoses. Last night, I gave them all of my checklists and they read everything. Her mum is going to go with me to my appointments and fight my corner for me! She's also going to show everything to her psychologist for me as she is apparently very good and genuinely loves her job and helping people.
Even if this psychologist doesn't have time to see me, at least I have someone there with me who can help me to explain everything
Fingers crossed it works out!

@wavefreak58 thats what I thought, but I couldn't say anything. I was already incredibly anxious and struggling so hard to even form sentences to answer her questions. I was scared that I'd annoy her and she'd shout at me. I know now that she wouldn't have done that, but when I'm in that kind of situation all rational thinking just disappears and all I'm left with is this fear of people.
Whatever happens - if I am diagnosed as aspie, or something else altogether, or even if it's found that there is actually nothing wrong with me at all - I'll be ok with it, as long as the decision comes from a professional who is actually qualified and capable, and who doesn't have the notion that you HAVE to have certain traits/symptoms.
I didn't know about the eye contact thing not being essential until today! It just seemed like all the doctors were saying it was needed but they didn't see it in me, even though I don't give eye contact, so I kind of believed they were right.

@SyphonFilter (isn't that the name of an old game? Vaguely remember it)
Yeah, I know It's just finding one though! I contacted the NAS after seeing the doctor for the first time. They told me that there are only 2 diagnosticians specialising in adult aspergers within 100 miles of my home who are available to take patients. Apparently they require a referral though. How to get said referral eludes me though!
OMG! You freaked me out there! I read the first little bit of your second post and panicked, thinking you were starting to have a go at me! Sarcasm is not something I find easy to understand! Realised in the end though!

@MollyTroubletail Thankyou I have felt all of those things so far and it's only been a few months! God help me if this gets drawn out over years as seems to happen for alot of people! I just wish I could actually speak to people without my brain just freezing! Even writing on here is just as difficult - I've been sat here for almost 2 hours already trying to think of the right words that I want to say in this post!

@edgezz Wouldn't it be so easy if everybody displayed the same traits! The 15 traits that you spoke of is what winds me up so much. I spent a whole week thinking about what difficulties I have, and ended up using 5 sides of A4 paper to write a bullet point list of them. A few of these things in one person could possibly be explained away, but to have all of them together must SURELY point towards something! I listed just under a hundred things and that is still not everything. To have all of that systematically dismissed as nothing was really soul-destroying and I just shut down.

@the_curmudge Oh yes, the professionals most certainly have all the power, at least with me they do anyway. I really wish that I could drop hints, but I just can't. I either say something straight out or I keep my mouth shut. More often than not my mouth stays firmly shut, which is why it's so brilliant that I now have someone willing to go with me and talk on my behalf when I just can't.

Right... I've really over-waffled now so I'm going to bed. Once again, thankyou all for your replies! Good night!

Chelle
Xxx

referral takes bite out of the local (NCT?) budget - maybe as much as £700. They are extremely reluctant to do this, what with the NHS collapsing around itself, funding cuts, redundancies and pressure to meet increasingly hard more-for-less targets. So be prepared for a struggle even with the nicest, most clued-up staff that you meet.

In general doctors avoid giving labels for several reasons; it can be an imprecise & subjective process, they dont like to pin themselves down when so often diagnoses are changed later on. Once a person has a label, they can place unhealthy limitations on themselves or may start exaggerating traits or adopting new ones. With psychological and neurological disorders the labels are often just that - labels, devoid of any established clinical significance. They may percieve that there are no practical benefits to the label, so dont think it worth all the hassle for either party. They may often see people presenting a variety of issues, who then change and stop mentioning the symptoms, so the situation often seems to resolve itself before a label had any time to be useful. For all these reasons and probably more labelling & official diagnosing is generally regarded as somethign to be avoided unless necessary.

With this in mind it might be helpful if you state what you hope to gain? eg. if its a need to meet criteria & access specific services then it implies that its not just a passing curiosity/'internet diagnosis' thing, but that your serious & your not going away till you get what you want.

You have the name of the doctor you wanted to speak to in the first place - the specialist. Call her office, explain your situation and ask them what you need to do to get a referral. Let them guide you. Many people give up after talking to one or two people. A general rule when searching for specific information is that you'll need to make a minimum of 5 phone calls before you'll even get someone who understands or cares what you are asking about.

Don't give up or get discouraged. Not everyone graduated at the top of their class. Not everyone is a dedicated professional. Not everyone knows what they are talking about.
You have already met a good assortment of ignoramouses. Keep at it! All it will take is one intelligent, dedicated caring professional and it all could change in an instant.

Good luck!