I had a diagNOsis and I don't believe it

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I was referred to a 'top' London hospital specializing in autism and behavioural disorders after completing the AQ test given to me by a psychologist who I was also referred to and I scored very highly (35 out of 50). In the meantime I was advised to read as much as I could as 'knowledge is power' I was told. I had to wait 4 months for my appointment and was so built up by then that I couldn't sleep or think straight because what I'd read was like reading about myself, there was nothing I didn't understand or agree with. I found great comfort in these books and this website and didn't feel so alone anymore. For years I actually thought I had a new, undiscovered illness because although I'd heard of autism, my cousin's daughter has it, I didn't know Aspergers existed because I've been told for 36 years I have Agoraphobia and I knew I didn't. I have no fear of going out and never have although I have always had over-sensitive hearing and sensory problems with sight , touch , among other things since I can remember. I feel uncomfortable on windy days because the leaves on the trees move in so many different directions I find it overwhelming and always wear sunglasses ( even in the rain at times) I'm 55 so the odd looks don't bother me and I'm a loud, vocal cockney who can answer anyone.

My mum and two sisters came with me to the consultation, I took school reports as requested and I had a two hour consultation in one room while my family had the earlier years discussion in another. My family left so much of my early years out, all the important stuff, they didn't push the psychologist on matters at all, questioned nothing and I know it's wrong but I feel so let down by them. I don't blame my mum she doesn't remember what day it is, bless her. But my sisters seemed to treat it all as a novel day out.


Long story short I was told I had some traits, but we all do, and I'm on the autistic spectrum but have GAD and OCD. I agree with them but as well as having Aspergers. I was told this was better as I can be treated with medication and there's nothing medication-wise they can do for Aspergers. I find this hard to believe as I notice many people here talking about their different meds. They told me to wait for the written report in 3-4 wks and then see my GP. I waited 12wks for the report and so much of it was inaccurate, sloppy and just plain wrong. They didn't appear to listen. And somehow the original mention of being on the autistic spectrum had disappeared and now I'm no longer on it. A miracle cure in 12 weeks! I've done all the other online tests I can and on one scored 175 out of 200. Who or what do I believe? My own gut feeling and experiences and these questionnaire results or the 'experts' who timed my consultation on a stopwatch, 'we have a lot to get through' and the insulting consultant who spend ten minutes smirking while giving his speedy diagnosis before walking out. My family felt the WTF? factor, too.

Now I feel in total limbo, the depression has hit a real low and I feel like a fraud visiting this website, even though I still think of myself as Aspergers-Undiagnosed. I don't know what to do. I will question this diagnosis in writing but I've got no motivation left at the moment at all, I can barely drag my sad old carcass round my flat. I've had to promise my mum I won't top myself but I can't stop crying, I feel so wronged.

What I'd like to know is has anyone else been through anything like this, not being believed when your gut tells you you've found the answer and if so, what did you do about it?

Sorry this has been so long-winded but I had to write it down. Thanks for reading.

Tiffinity

Get a 2nd opinion.

It makes me believe the whole thing about "professionals" misdiagnosing people. The whole aim is to direct people to diagnoses that result in prescriptions in order to support the pharmaceutical industry! Red ones, green ones, yellow ones...One to take you up; another one to bring you back DOWN; another one to level you off! So the whole thing may well BE a LOAD OF CRAP! Your whole situation REEKS!

I just don't know what else to say! You DO have a right to seek a SECOND OPINION, though!

I think that your story is repeated again and again sadly. I agree that you should get a second opinion at some point but it would probably do you best to deal with the depression and OCD first as I think comorbidity decreases your chances of recieving a dx for Aspergers.

I agree, second opinion. I can see why the doctor did what they did and the reasoning behind it; doctors love nothing more than to write scripts. Asperger's doesn't have a pill so I can see how a doctor would be reluctant to diagnose you with that.

I could imagine the same scenario playing out in a different situation:

Patient: "Doctor, I believe I'm gay. I took a few gay tests, I like men, and I relate really well to other gays. It all makes sense now!"

Doctor: "Hmm... yes, you may be a little bi-curious. Unfortunately, there really is nothing I can do for you if you're gay. What I think you have is social anxiety around women. Let me just write you a prescription for xanax and viagra and see how that works out for you."

Get another opinion.

My story is this: when my then 5-year-old daughter got her AS dx I read everything I could about it. The more I read the more I saw myself and my husband in what I was reading. Eventually it became too much to wonder any longer. We sought out a psychologist who deals with *adults* (that's key, as so many people dx children) and he gave us each an AS dx, too.

When our younger daughter turned 5 we felt it was time to check on her, too. Let's face it, genetics were not in her favour. We went to a highly recommended clinic where we were told that although our sweet girl was exceptionally bright, she was far "too social" to be on the spectrum.

I didn't buy it. She is nothing like her sister, but my goodness does she ever meet the criteria (in my eyes). So off we went to a developmental disability consulting group and the doctor there within the couple of hours felt certain she was an aspie, too. So she sent us off to yet another expert in the field. It took him no time at all to find her as having aspergers, too.

So called experts can be wrong. They may be rushed or just not paying attention, or maybe this person didn't understand why someone who's 55 cared. I don't know. But I do know that finding someone familiar with diagnosing adults is key. It can be harder, apparently, since the older we get, the more we are better able to cope and deal with things.

I think your age might be something your psy didn't take into account. You're 55, this mean that you had 55 years of experience to protect yourself from what life brings you. My father is 60 now, but got no diagnosis. He could look normal, but when you know him like I do, Asperger would be a good diagnosis. When I talk to my mother about this, she tells me that my father made a lot of progress in facial expression and casual conversation. The key word here is "progress"... Experience bad or good, changes how you are one step at a time. It doesn't change how your brain work, only how you react or act to any given situation.

I'd go see another psychologist who have knowledge in ADHD or similar neuro pathology. They should also have knowledge about Asperger. The one you saw might only have the idea of Rain Man (or extreme cases) as an Asperger, or might think you show too much emotion for an autistic person.

Dr. Stopwatch removed all confidence anyone may have had in his ability. Does this seem like a medical professional that has your best interests in mind? Sounds more like a kickback clinic more interested in high turnover and highly medicated diagnoses. There is no medication for Asperger's - only for the range of other conditions commonly found with it - depression, anxiety, etc...

A second opinion is definitely in order.

I'm a grumpy old man... but I've come to believe that, when anyone "presents" with problems to (most) psychologists and psychiatrists, then they will find a problem that they can manage. However, you will need medicine, and you will need to keep coming back to see them. They "manage" your problems. They work to find a drug or drug combo that makes you feel "better."

So... for sure get a second opinion.

It sucks knowing you have something and the doctor to say otherwise. I feel a bit cheated because if I had the knowledge that I have now, I would have made sure to mention all my quirks to the doctor 8 years ago when I was DX with tourettes. I missed out on valuable therapy that may have helped me be a more productive adult.

I am still debating on weather or not to go back and getting tested for AS,

There is no medication for AS, as it is really isn't anything that needs to be medicated in itself.

Most people who are on medication are on medication for things like anxiety, depression, concentration issues, mood swings, etc. It's unfortunate but true that amongst the children, medication is frequently implemented in an attempt to control them in some way or another, or make them more agreeable, but parents usually will ultimately find this to be futile, as the medications were not designed for anything of the sort.

I have not been in your situation. My differences didn't go unnoticed as a child. As an adult, however, I can occasionally "pass" for NT fairly well...not always as well as I'd like, and sometimes too well for my own good. There is a chance I may elude a diagnosis should I be evaluated using these new adult testing methods if I, or my parents were not entirely honest.

A lot depends on the perceptions others have of you and how they interact with you.

To my parents, I was visibly different than other children, and horribly frustrating.
To most of my siblings, I was much the same, and you can add on "weird" and "embarrassing".

My youngest sibling views me as quite normal, however, and this is likely due to the fact that I was more of a parental figure due to our age gap.

In some families, there isn't much of a perception of norms and significant deviations from them. Those who are very different are just themselves. The family accepts that that is just the way the person is.. This can be good, or bad. For those who are very self aware, and not very expressive, this is usually bad because they perceive their differences and can't communicate to their family how much strife this causes them. To those who aren't very self aware, this is generally not a problem. Self awareness, by the way, is controlled by a specific part of the brain. Some people literally have relatively little ability to self reflect, and so perceive all difficulties in life as external...something they have no control over, and are a lot more apt to accept their life the way it is.

Thank you so much to everyone who took the time to read about my problem and post a reply. It brought tears to my eyes just feeling the support.

I am going to seek a second opinion but it has taken me a couple of weeks to psyche myself up again into actually caring what happens to me ( these doctors don't know the damage they can do) but you have all definitely helped and until I get a positive diagnosis, I'm Aspergers Undiagnosed and proud to be part of the group.

Thanks,

Tiffinity.