Hello,
This post is about diagnosis hell.

I could write a book, instead I shall be brief- ish. I am a 44 year old black female, although people often mistake me for someone in their twenties. I used to think I was a late developer, but now I have to conclude I am very young inside and out — I feel for example I find myself when very exited, waving my arms. I can never stand still at the bus stop, always moving, sometimes pacing. At school I find myself easily distracted by sounds, sometimes blurting things out. Just yesterday I caught myself pointing and sniggering at a young girl who had chosen to wear very high heels and a tiny skirt. These behaviours are not normal. And I see that I remain as I was 25 years ago. It was then, my sister recalls, that I laughed at her when she came home from college wearing makeup. I just don't get certain behaviours and they strike me as funny and fake...

This brings me to why I have joined Neuro Talk. All my life I have had issues which I could not explain. The most embarassing involve odd childhood behaviours like hiding bowel movements around the house insetad of using the bathroom, being reprimand at school when about 11 for writing a very gory short story involving a fetus, wetting the bed until I was around age 10, having strange dreams every night where I would hear a violin playing and was terrified, being diagnosed, I think, with epilepsy. I used to take things like tegretol.

I grew up in a town in England where the dialect is very strong. Yet I hardly sound like everyone else. I listen to the way my siblings speak, at first I thought they were faking it, but now I know that my innability to pick up my native dialect is a part of a bigger problem.


In school I was often harassed for being black, but this, like everything else, did not stop me . I was always good at English. As a child I read voraciously and was , and continue to be obsessed with books.I just broke a recent obesession where I kept buying books. One day I realised that in place of food in my kitchen cabinets, there were books! As a child I was obsessed with reading books on astronomy and botony. I loved to identify plants and enjoyed reading about and drawing fungi! I was obsessed about the Incredible Hulk, collecting cards, comic books and even writing out from memory scripts from episodes I had watched.

I do recall being concerned that I did not seem to have emotions like the other kids. I used to call myself mr. spock. because I always felt detached. I do remember another bad incident where I took money from my mothers purse and used it to buy icecream for the kids at school. The teachers told my mother about this. For years My sibs and mother called me a theif. For years I was humiliated because I did not know how to do things right. My mother called me crazy. I believed her.

I had/have a funny gait, on tiptoe, that I seem to have changed five years ago by changing my diet. I diasgnosed myself as a Highly Sensitive Person , because whenever there is a sudden and loud noise I see a flash of light, sometimes with a brief image, I 'feel' the sound on my sternum. I feel as if I am half in and half out of the world, as if objects are not quite solid. I walk fast as I try to immitate normal walking. If I look up I loose my sense of orientation... There is a constant feeling of 'static', often preventing me from focusing on work. On really bad days, I cannot even pretend to walk properly and stay home because people may think I am drunk. People behind me, cars, sometimes I feel on the verge of howling. I cry very easily. Smells often overwhelm me. Certain patterns upset me. I feel disquiet when I see stains . I tend to do things as a ritual or routine to cut down surprises. I ate the same sandwich for lunch every day last year... I'll head for the same seat, eat the same foods, even wear the same clthes, because there are no surprises to have to add to the other stuff.


I cannot seem to grasp the idea of left and right. It shifts. I cannot drive, swim or ride abike because of balance and left-right problem I suppose. I have a really hard time understanding what people are saying at times, particularly if I am sick, or if there is other background noise. Often I watch peoples mouths when they speak to me. If I look in their eyes I cannot hear them as well. I used to not do eye contact. I find when I am really upset, I cannot even pretend to maintain eye contact. I have been called out on that several times.


I have learned to say please, thank you, excuse me, but once again, they do not come naturally to me and when I am exited I can become very 'onnoxious and demanding' (words people have used to describe my behaviour,). I have poor success with my neighbors because they seem to want me to be very very quiet during the day, yet at night they make a lot of noise so I cannot sleep. I have moved many times and this behaviour from my neighbors gets worse and worse so I have concluded I am the one causeing it, because I cannot adjust my behaviour to fit in...



I sleep very badly. Two hours maybe to fall asleep, up to the bathroom 3-4 times a night, often get up at 2-3 am. Slightest sound wakes me up...

I could write a book... I love books.


Forgive my rambling, I have a hard time making myself understood. I think I am being clear, but when I speak from the heart I am misunderstood. I paid a lot of money to have the psychologist asess me for learning disability, dyspraxia and aspergers. I think I may have CAPD as well. These are thing I never thought applied to me until I realized how poorly I follow direction, how poor my short term memory is. I started to read. After 44 years I have found answers. I went to the psychologist seeking validation. I went the week after finals at school. My neighbors had been acting very badly and thus I had hardly slept that week, but was eager to get the testing (16 hours over with) since I hate the sense of being tied to form filling activities and such.



So this week I am called to the psychologist for the report. She tells me my testing was inconsistent, implying firstly, that I was not motivated, and secondly, that i was faking it! She has written a story about a girl who never learned to socialize and is a perfectionist who in coming for testing is making a cry for help. She does not link my sensory isues ( my conerns) to anything. She syas I don't have aspergers because I have no special interests. ( I guess I did not realize my facinations were spetial interests at the time). She seemed to conclude I had a possible personality disorder!


I processed what she was saying. Like my mother, and sibs, she was saying I was (no disrespect) crazy. I told her I had read about how something called sensory integration. How wearing a weighted vest can help. I told her of my way of carrying a heavy book in my bag or wearing clunky shoes, I have even worn ankle weights on worse days because I felt less 'disintegrated'. She did say I should go see someone else about the asbergers, but I felt totaly invalidated and confused because I am 100% certain, yet I have not communicated this and been misunderstood. I finally cried, and of course I lost my ability to maintain eye contact. My clumsy hands made blowing my nose embarassing. I appologized for not maintaining eye contact. She was telling me I was a fake. How ironic.


This is going to taked years for me to recover from. I think I need to write down my concerns next time, and make sure I am not sick or tired if there is testing.

When you reach 44, have not a single friend, can talk to people but find it tiring, burn out quickly at work from having to act 'normal", feel very immature inside, are clueless about peoples motivations; misinterpret comments like :" hi, I'd like you to meet X, he claims to be my boyfriend", taking it literally at first, then understanding this is an example of playful behaviour; and struggle with sensory issues and processing issues —
which diagnosis makes more sense? Personality disorder, or aspergers?


I rest my case.

Sorry it is kind of heavy.