[argaric]

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.

[Hockey]

Hi and welcome to NT!

This is a long shot, but have you ever suffered a head injury? A lot of the things you described (depersonalization, lack of inhibition, lack of volition, OCED, oddities in speech and vision) can happen after a traumatic brain injury (tbi).

If you can't recall an injury, ask your Mom about falls you might have had as a young child.

If you can put up with any more tests, perhaps you should consider a neuro-psychological exam to see how your brain is actually functioning.

Good Luck and Hang in There

[Chemar]

welcome to NeuroTalk argaric

I am so sorry to hear how you have been treated. I hope you will soon feel at home here. We are a very caring community

my youngest son has Tourette syndrome with additional CAPD and sensory integration dysfunction etc etc, and I can only encourage you to move on as fast as possible from that psychologist. We learned the hard way that, just as in all professions, there are good psychs and lousy psychs. Sorry you got a lousy one!

a lot of what you are describing does sound like symptoms that may be aspergers, and I also recognize your descriptions related to the CAPD and sensory stuff from what my son has experienced

not sure if you have seen the section at PsychCentral yet where you can take tests and see if certain disorders may fit
There is one for Aspergers too
http://psychcentral.com/quizzes/

I do hope you will be able to find a competent psych who can correctly evaluate you
The info Hockey gave re head injury is also valuable in case you have in fact suffered head trauma at some time

In the meantime, I hope you will receive much support and info here

[mrsD]

Welcome to NeuroTalk....

It can be so difficult to get a proper diagnosis!

This is a link to a test, that may help you:
http://www.rdos.net/eng/Aspie-quiz.php
If you take this test, answer quickly the first impression you have, DO NOT mull over the questions. A spontaneous response it the most accurate.

Toe walking is a definite sign of being on the Autism spectrum.
But it is not a conclusive sign.

A personality disorder, is not the same thing as "being crazy".
In fact personality disorders are not considered pathology.
Severe ones can become diagnostic entities however.

There is an excellent book written about this by Dr. Oldham. It is fascinating to read, and has a huge self test, that is pretty accurate.
His test is now online for anyone to try:
http://www.personalityonline.com/tes....html?testid=3

This book of his is just fascinating. It is written in a style anyone can understand, and has helpful tips on how to get along with various types of people. I guarantee you will find it helpful, and I myself, go back to it still now and then for a refresher! And it is not expensive either. I'd recommend reading it FIRST before taking the personality test I linked above. The same test is in the book as well.

http://search.barnesandnoble.com/The...am+personality

If you decide to find another therapist, I'd make sure you find one with experience with Asperger's, and high functioning autism, and that way you may have a better experience and get a more accurate assessment.

Best wishes to you.

[argaric]

Originally Posted by Hockey

A lot of the things you described (depersonalization, lack of inhibition, lack of volition, OCED, oddities in speech and vision) can happen after a traumatic brain injury (tbi).

Hello Hockey,

Thank you for your input. I have considered the possibility of head injury, but I have no recollection of ever having had one. I am currently looking for ways to make meaningful contact with my sibs ( I seem to have no clue how to interact even with them!). I will find a way to ask them what they recall of me as a child.

[argaric]

Originally Posted by Chemar

welcome to NeuroTalk argaric

I am so sorry to hear how you have been treated. I hope you will soon feel at home here. We are a very caring community

a lot of what you are describing does sound like symptoms that may be aspergers, and I also recognize your descriptions related to the CAPD and sensory stuff from what my son has experienced

Thank you so much for your reply Chemar. I have always found myself to be different from others. My earliest memory is of chewing a plastic hammer that had pink, blue and white beads in it, and chewing a plastic camel. Even as old as 11 I would chew at the sleeves of my sweaters and at shirt collars. I did not like looking at anyone, and hated to speak. I think my symptoms go way back. My nephew has autism, another nephew has some difficulty with speech, and I truly believe my mothers inability to be nurturing is a sign she has aspergers. I don't recall she ever hugged me once. I wonder if she feels the way I do about such social rituals. She also has habits of doing things as if following a routine. She had a terrible temper when she did not get what she wanted and was very mistrustful of people.


My childhood was so humiliating and confusing as soon as I had matured sufficiently I have been looking for answers. Imagine a 15 year old reading books on asian philosophy? That was me... What a pity I was not able to communicate my experiences as a child. I lived in a hell of sensory bombardment for forty years. I also lived in ignorance. Christmas, about 5 years ago my sister finally opened up about the past that enabled me now to comprehend why she seemed never to have liked me. I do not have much recall about childhood events but my sister had harbored decades of hurt in relation to my treatment of her. Specifically:

1. An incident where she fell getting off the bus. She said I was with her. I had looked at her on the ground and walked away (sounds typical aspergers, now)

2. I had gone away to college and then to Spain to teach and not once written or called to ask about her or tell her what I was doing. ( again, I was clueless and thought my sister was showing she was not interested in me at all)

3. Living in the states I had invited her to visit me, but sent her a quick note at the last minute saying I was moving and not to bother coming. (Total misunderstanding. I should not have been so terse in the note. My sister thought I was saying I hated her and did not want her to visit.)



After moving to the states A neighbor who seemed very like me got me to look into the idea I might have food allergies. A blood draw confirmed dairy, cane sugar and eggs. Since almost completely eliminating these from my diet, and taking a ton of amino acids and vitamins my toe walking amazingly ceased, though things seem to disintegrate somewhat when I am upset. I thought I was cured of whatever I had!

I became a little bolder, enrolled at my community college to learn graphic design because I know I am unable to continue as an RN and wish to harm no one. I get good grades, but this is because I am very much a perfectionist and will repeat an exercise until I am exhausted in an attempt to get it right. I stood in front of my computer so long putting together a power point presentation ( almost 48 hours straight) that it was only as I left my apartment I realized my ankles were swollen and I felt dizzy! I take a lot of online classes because the truth is you can get away with having your notes to prompt you during quizzes. I have major problems retreiving information otherwise , and can and will do very poorly in a quiz if I am tired or stressed or sick. My mind literally goes blank. Some days I am so overwhelmed by all that I have to do I can barely speak to people and become monosyllabic.

I am, I admit slow at designing, do badly at timed quizzes in design because I cannot work quickly without sacrificing accuracy, and frequently forget how to do things I know that I know. I know I can be exasperating to instructors because I am always asking for clarification. Like Einstein, I can feel lost and disoriented in familiar places. I believe this is dyspraxia.

I have no time for my hobbies, although I suspect I become obsessed about the subjects I study. For a couple months I had a hard time not talking about my small business plan to anyone who would listen.

I have a very hard time taking notes, listening and processing , particularly new information, such as algebra and I feel innadequate in the classroom. Sometimes I watch an instructor speaking and have no idea what they are saying - everything is so loud - students talking, paper rustling, fans and projectors and soda machines whirring.... often I walk home in a daze, my ears buzzing. I find myself leaning towards classmates to hear what they are saying. In guitar class I was unable to hear the student who was playing a duet with me...

I am too stubborn to lapse into failure this time. This is my last chance to succeed as an independent woman. There is no family to fall back on.

I need a diagnosis because it will strengthen me even more as I struggle for success and accept the reasons for my limitations. I take courage where I can find it, and I find myself emboldened the more I know myself.


I will be better prepared next time. Thank you again for showing me these symptoms are real.

[argaric]

Originally Posted by mrsD

Welcome to NeuroTalk....

It can be so difficult to get a proper diagnosis!

Hello mrsD,

Thank you for the links and advice. From my reading I have noted the relatively low rate of diagnosis of aspergers among women and girls. I understand now how diagnosis in adulthood can be difficult even if the client is sure. I wonder, though if the psychologist was also engaging in some form of 'profiling'. She was certainly not listening to me. I was very tired and perhaps I should have been more focused.


I found the report she wrote cruel and misleading. She seemed to think I needed something from people and was seeking making a cry for help because I was not getting it; that I had learned all my symptoms as a result of a mother who did not eschew socializing... (Truth is if society did not exist and I did not have to function in society, I would be very happy indeed. Give me solitary confinement and a pile of good books, anyday ...

The psychologist seemed adamant I had anxiety, even though I kept trying to tell her it was not anxiety in the sense that people normally experience it, rather my sytem seemed overly sensitive and receptive. I informed her of the racism/bullying I had suffered at grade school and denied it had stopped me in any way from living my life; I think differences in skin color should be the least of anyones worries. Indeed, what was preventing me from being happy was feelings of being odd and 'out of it' all the time. Like, I have a memory of becoming really itchy everytime I would look at a particular walpaper in our kitchen around age 7. To this day certain patterns set me off. I kept trying to tell her about how as a grade schooler I would skip many meals because my hands would shake as I raised them to eat (dyspraxia I think now). She was determined not to listen.


I know I have learned a lot about how to appear like everyone else, but I behave strategically, rather than having genuine 'empathy', if you will. But perhaps I see how my tendency to rambling and not making myself clear about why I was there affected her judgement of me.

I know my writing rambles too. I have diffiuculty sequencing things. Sorry.

You know, my mother once called me deformed on account of my walking on my toes.

I am going to check out all the links you gave. Check out Dr. Oldmans book.
I score very high on those online aspie tests and I just know my search for meaning is at an end. I will try my best to get information together and present it to the right professional so I can move past this feeling of being stuck .

Ok. I got 156/200 on the Aspie quiz: I am very likely an aspie. But then, I already know that.

I am glad there are people who identify with my experience. I was beginning to doubt myself for a moment. I bpight milk and cream cheese yesterday in denial of my casein and whey allergies! I must admit, my stomach is now upset, and my head feels a little strange. I was being silly. No way do I want to be the wreck I was again.