I need help with diagnosis

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I am getting a diagnosis rather late, and the process is super confusing. So, I need your help. Here is my history:

At 8 years, the receptionist in the principal's office asked me if I "ever bang my head against the wall repeatedly". I told her no, I do not. I was there for not having my homework when I came to school in the morning. She was reading about autism and thought that I had some of its traits. Nothing more was said.

At 10 years, I was put into the resource room, for people with learning disabilities and mental retardation. I liked it because they let me read for hours at a time. An intern from the local university gave me a vocabulary test and was shocked by the results. She went on a campaign for me to get me out of the resource room and into the gifted and talented program. They moved me the next year. Teachers were shocked. Upon entering my reading class, the teacher started yelling me while I was just inside the door, in front of the whole class: "I have 15 students in here who are more deserving than you to go into that program. They DO their homework." It was embarrassing and socially debilitating. I never forgave her.

At 14 years, a boy at my bus stop told me that his mom is reading lots of articles about Asperger's Syndrome, and that he had read some of them and thought that I had it. I took it as a partial insult (although I got the caring part), and did not follow up on it.

Around the same time, Rain Man came out, and one of my best friends (yes, I had friends, sometimes), told me that Rain Man reminded him a lot of me. I thought so, too.

At 15 years, my school counselor "diagnosed" me with "borderline borderline", from a fill-in-the-bubble test. Nothing more was done.

At 16 years, my homeroom teacher told me that he thought I might have Asperger's Syndrome. He did not follow up on the advice.

At 35 years, my school counselor told me he might want to explore the possibility of PDD-NOS. I told him I was sick and tired of people telling me that something was wrong with me, and I was definitely NOT interested in anything involving something developmentally wrong with ME. It was everybody else who had the problem, not me. I was more interested on working on understanding why everybody was so wrong about my giftedness, and how I could ameliorate the misunderstandings. Nothing more was said about it.

At 40 years, my sister diagnosed me (quite unprofessionally), with Asperger's Syndrome. She wrote me a long letter telling me that I have it. At the time, she was using a computer website to diagnose people with anything and everything, and charging money for it. I told her to quit being so ridiculous, and I was actually quite angry about her long directed letter.

But I mentioned it to my school counselor, anyway. He said, "Absolutely not!" He explained that every problem I came to him with was about difficulties in the social realm at school and in dating. He told me that people with Asperger's Syndrome have "no interest at all in being social". He said he had seen some of "these people" in his work, and that I should believe him, they are completely uninterested in human contact, and I definitely do not have it. That threw me off for a few more years.

At 43 years, my sister sent me "All Cats Have Asperger's Syndrome". I read it, and I had to agree that every page described me pretty well. This made me curious, but not enough to look it up on the Web or anything. It was just a little seed. I read the clinical criteria, and I did not connect with everything on the list. I thought then, I do not have it, I must just have some aspects of it. It did not sound like me much more than any of the other things in the DSM-IVR (most of which I can connect with on some level). Later I would learn that it is just too technical and clinical for me to understand. I needed some anecdotes and a professional diagnostician who has expertise in autism.

At 44 years, I went to Thanksgiving at my sister's house. She had 20 books on Asperger's Syndrome, and told me to read them. I said, OK, sis, I will read them. I woke up at 5 AM the next morning, when all the house was quiet, ordered them from smallest to thickest, and started reading them. It did not take many paragraphs, dear reader, for me to be just about fully convinced. Most of these books start out dispelling myths about social desires, and they are descriptive enough right in the beginning pages to tell me I had really found a group that I was a part of. Each book was confirming. Most every anecdote was confirming. What is really amazing is that the majority of anecdotes are not only resonant, not only something I can empathize with or connect to, but more like the story of my entire life. Some of the details were TOO close to my life, as if somebody had taken my story and copied me. I started getting a sense that what I thought was unique (and valuable) about me was nothing more than a genetic phenotype, which many people shared. It was both exhilarating and depressing at the same time. My sister had originally discovered it, it turns out, from watching a documentary, and saying to herself, "That is my brother." She said at that moment she loved me more than she ever had, and found it immediately easy to forgive me for wrongdoings (such as hitting her--out of frustration), and to forgive herself for being embarrassed by me and socially excluding me from her group of friends because of that embarrassment. I saw some documentaries on You Tube, and I thought the same thing. That looks like me at that age. Then, I read over 50 books and documentaries. Some I really liked are "Asperger's in Love". (I found out from that that my mom and all my dads and step-dads have Asperger's or broader Autism phenotypes), "Stress and Autism", "Cognitive Behavioral Therapy for Adults with Asperger's Syndrome", and "Asperger's in Business".

So, I went back to my school psychologist, and he stuck to his guns. He does not think I have Asperger's, although he will not stop me from exploring the possibility (he will give referrals for insurance purposes). But for me, it was a foregone conclusion. And by then I had also realized that he was misinformed about autism (because of what he had said earlier). So I sought people with expertise in autism. I delayed 6 months without support, and finally got 5 names and called all of them. Here is the problem. Calling all 5 did not seem to get me anywhere. They all have completely different approaches and methods. I do not know any more now which one to chose than I did before I called. Few of them seem to jive with what most of the books are telling me, which is that psychohistories must be done by calling or writing the parents. One does that, but she seems unprofessional, giving me her cell phone right away and chatting me up on the telephone for a kind of long time for a psychologist. In general, the women seem more nurturing but also more unprofessional. They have broken website links, messages that say the website will be back up on a future date (which has passed). They talk on the phone more like a friend. The men, though, seem too efficient for profits. It seems like all they want is quick back-to-back sessions and money. I hate being sexist but that is my impression so far from the calls, that the male/female division is an interesting one so far.

One therapist does a battery of fill-in-bubble tests that take 8 hours. He uses that for statistical norming and then makes the diagnosis using his professional experience. Another does 6-8 sessions of psychotherapy, and does not believe in the bubble tests unless they are necessary for a school or government purpose. The diagnoses emerges from the psychotherapy. Since I can speak myself, he does not need to talk with my parents about my childhood behavior--I can tell him, myself. Another one is a group practice, which uses nurse practitioners to do the diagnoses for adults, and pediatricians for children.

Finally, just for fun, I called Mayo Clinic. They said that they do NOT do autism diagnoses for adults. Wow, a group practice of thousands of professionals, who specialize as a group in rare diseases (along with all the common ones), do not diagnose autism in adults! I was shocked. There is other discrimination against undiagnosed adults coming up here and there, also. Some state agencies that I called practically treated me as a criminal, saying "You have to be diagnosed as a child" in order to get any services from them as an adult. So, citizens who missed getting diagnosed, now cannot even get treatment in the later years. They get beaten as a child and then they get kicked as an adult because of it. I felt like it was the dystopian, "Just go away and die" message.

Anyway, I have no basis for comparison even after talking with them all. And I do not know what to do next about a diagnosis. All 5 of them are contracted with my insurance, and all 5 state that they have diagnosed over 200 adults. I know one approach is to just choose on on intuition or any other method and get something going. I can always go to more than one. Should I be wary of the any approaches or methods, or look for certain features?

I was diagnosed with a day of testing that included spacial/visual testing, verbal IQ testing, pattern recognition testing, memory testing, facial recognition testing, some true/false testing, and some some strongly agree/agree/neutral/disagree/strongly disagree testing. My story has some similarities to yours, though I did bang my head and the tipping point wasn't a family member, it was heartbreak and I was desperately trying to find out why I wasn't able to pick up on something that was obvious to everyone else, namely the way she felt.

Sorry I can't vote because I haven't been assessed but I am a bit confused. How can someone have suggested Asperger's Syndrome when you were a child because as I understand it AS specifically was only recognised from 1993/1994?

I may be wrong on multiple levels. However, I think that Asperger's was recognized around 1982 when Lorna Wing's paper and many other papers started coming out. I think that those are the papers that my friends and colleagues had been exposed to, and earlier that people had been exposed to some obscure writings on autism. It took a while longer to get into the DSM and other diagnostic criteria. And then it can take longer still for diagnosticians to become knowledgeable about it (thus my therapist who had graduated before those dates and had not gotten up to speed). Also, my memories of what people said during my childhood are filtered thru my current experience and what I know now. So, they may very well have said "autism" or anything else. I am kind of sure about what they said, though, because I remember a lot of the details. This was during a time when not much was known about autism, so I was not able to receive the services that children can today.

Last edited by davidjess on 14 Jun 2011, 1:33 pm, edited 1 time in total.

People knew about it since 1944, maybe he's using autism and Asperger's syndrome interchangeably though. Or maybe he's Austrian.

Oh ok. I live in a bit of a back water and I doubt they would have been very up to speed around here. I may be doing them an injustice but I am just going on my experience of the local psychs etc.

I don't have a diagnosis for Aspergers, but if its any help to compare I was diagnosed for ADHD on the NHS in the UK. I was initially screened using Connors questionnaires, I was seen by a general Psychiatrist to rule out other causes, I then was sent to a specialist clinic where I was given further questionnaires, for me and for an observer, interviewed at length to discuss examples of how I fit the DSM criteria now and during my childhood, my Mum was also interviewed (as an adult this was my choice not compulsory) and I gave them my school reports to look at. I had to explain how my difficulties affect my life.

I know that things are different for different countries, but I thought that this might be interesting to you because the NHS is not a business.

I agree that the parents don't have to be interviewed, it is not always possible for adults, maybe in your case it might be useful to take your sister to one of your appointments as another person who was around when you were a child? In my case my mum tried but her memory wasn't great, and she had never really realised what my difficulties were because I hid them so well. I took a close friend to another review appointment later on and this was helpful.

As for which to choose, I would say that only you can decide which is best, but maybe you could start by ruling out any you don't think are good and see who you are left with?

Personally I don't think that someone being chatty on the phone is a bad thing, it may be her way of seeing how you are, in order to get a diagnosis the person does need to get to know you, so I wouldn't worry about that, but if its not your way, then that's fair enough.

Anyway, good luck.

@davidjess, I didn't take your poll since I haven't been completely assessed. Going through the process now. Hopefully, I'll get my DX that I've been after for some time. Anyway, I think there's a variety of way you can be assessed. I've taken the DSM IV multiple times with nothing conclusive as far as my diagnosis goes. I did have a shrink about 10 years ago tell me that there was something "off" about my personality but she couldn't give it a name. None of the other shrinks could put their finger on it either. They just concluded I had some type of personality disorder. At that time, Aspergers in my community was mostly unheard of, & an adult would not have been diagnosed since only children or teens could have it. Since 2006 or maybe 2007, when my oldest daugher was DX'd with AS, I have done my fair share of research. AS fits me too. In fact, not only does it make sense but it looks like my 83 y.o. adoptive dad probably has it too, since he meets at least some of the criteria.

If your insurance covers it, that's awesome. My best recommendation would be to go with the group that has the highest number of diagnosed adults.

Best of luck!


Tomboy