Adults, were your parents involved with your diagnosis?

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Disclaimer: I know I've been initiating several new posts...I'm kind of in obsessive mode at the moment.

In preparation for setting up my first appointment for assessment, I started making a list of the traits that other people have noticed, since it's incredibly unlikely that any of my family will be willing to participate in the process (they'd believe that I'm much too smart to have something wrong with me), and I was traded back and forth between family members throughout my entire childhood and adolescence, so no one ever had the opportunity to continuously observe my behavior.

I'm interested to know, if your family members were involved with your diagnosis, what kind of information did your therapist need/ask from them? Again, I doubt anyone would be able to discuss my behavior as a child or adolescent at length. These are the things I've written down that people have remarked to me over the years:

1) All of my work friends confessed they thought I disliked them for a long time.
2) A co-worker said I never looked her in the eye...when asked, other co-workers confirmed the same.
3) Mom always asked me to repeat myself, saying I spoke too fast. Also, that despite writing eloquently, that no one would know how smart I was once I opened my mouth.
4) Family makes comments like "oh, here she goes" or "don't get her started." Boyfriend says I ramble too much or go into too much detail when explaining things to others.
5) Mom once walked in on me rocking back and forth after a very upsetting argument and said: "what are you, ret*d or something?" (for the record, yes, my mother is a horrible monster)
6) Have been frequently told to smile or cheer up, despite being perfectly happy - asked "what's wrong?" when nothing is.
7) Went to see a friend's play, and during intermission, all of her castmates apparently said: "what's with that redhead who has looked disgusted the whole time?" - friend had to explain this is the face I make when I'm very involved or interested in something I'm watching.
8) Boyfriend constantly points out toe wiggling and random, strange breath sounds. People say I must be nervous, then I notice I'm biting my nails. Co-worker once tied my legs together to keep me from pacing.
9)Constantly deal with hearing: "I shouldn't have to tell/remind a teenager/adult/25-year-old to do that."
10) Family constantly reminds me that whatever I'm going on about is just my opinion.
11) Frequently forgot to introduce my boyfriend to family and friends when we started dating, which he and other person would remark on.
12) Early on in my employment (I've had the same job for 9 years, since the 10th grade), my boss had a meeting with me, where she explained that I knew the job very well and carried out tasks efficiently, but that I seemed to have trouble communicating properly with members/customers. She cited an example that she witnessed, when a member came in and said she'd like to update her billing information, and I just turned and walked away to get the form, without any indication that I had heard or understood her request.

I don't even have a diagnoses so no, and if I do get one I doubt they will be much help with it.

Thinking of how you appear to others can be a huge help during the evaluation. As far as I remember, there were questions concerning it.


My parents were interviewed according to ADI-R. It took about 2.5 hours. Besides general questions about my childhood, development, health issues, they asked autism-specific questions (behavior, likes, dislikes). We had to fill in a 45 page questionnaire based on ADI-R before the evaluation started so on the interview they had a relatively easier time.

#s: 4,6,7,10,12 I can relate to.
I'm 54, just found out about Asperger's 2 years ago, and when I mentioned it to my mother, she literally had no comment. I think she took it as an accusation that she is responsible for it, or that it is her "fault" or something.

My daughter is majoring in psychology. When I mentioned it to her, she simply poo-pooed my concern and flatly said, "No, mom, you don't have that." An amazing diagnosis, in a five minute conversation, over the phone.

I can see that my father had Aspie tendencies and his mother also. Neither were diagnosed, but both managed to live very productive and successful lives - despite their private uncertainties and torments.
I'm trying to do the same.

I think you're on the right track by writing down things that you or others have noticed or commented on about your behavior.
It would be nice if you had some family members there to support you though... or maybe not. Not if they are like my family members.

I am 31 now and was diagnosed at age 29. I did not share the diagnosis with my family for almost a year.

When I did share it with them, they did not believe me and argued with me about what autism/aspergers actually is. I think they took my announcement as some sort of referendum on how they raised me...which it wasn't.

My parents were the ones that took me to the shrink to get the diagnosis in the first place.

My mother answered many questions about my childhood behaviors, many of which were unremembered by and unknown to me. For example, I did not remember any of the morningly meltdowns that I had each and every morning between the ages of three and five.

It was funny when she and I remembered the same behaviors and gave vastly different descriptions of them, based on her perception from the outside and my perception from the inside. She thought that I did not respond to my name, because I was shy and did not want to respond to my name, and I said that I did not respond to my name, because it did not occur to me to respond to my name when I heard the sound of my name, which had as much social meaning to me as the sound of leaves rustling in the breeze.

/\ MissQ, it's similar for me....I'm sorry that your mom, like mine is in denial.
I discovered what AS was several months ago. I had been searching my entire life to figure out what's been wrong with me. My father also has traits, although he seems to be borderline.

As I was remembering back to my childhood, I recalled I was given a special test in first or second grade. Apparently my parents either don't remember this or they were never told. When I asked my mother about this recently, she didn't know, but she must have spoken to my brother about it too. He was also given a test like this. I don't know what it was for, but it was probably a learning disability/cognitive test.

I was terribly shy in school and didn't play with other children.

I'm working on getting my school records now.

Both times the professionals asked to see my mother. I was 25, so a young adult.

Early childhood stuff, of course, and to collaborate with what I said to them; who knows, I might not be the most objective person to define myself. O, one of them saw my mother when I wasn't there, whereas the other was at the same time. Same questions as what was asked of me for the most part.

I was shy also, or at least until I became familiar with the person... then I was just the opposite. I large groups, like in school, I was the perennial wall-flower.

I don't know where they are now, but I remember finding my grade-school report cards when I was in my 20s. Every year the teachers comments were nearly identical: Slow to catch on until mid-year and then I would finally catch up with the others.
This wasn't entirely true though. I know now that by mid-year I had simply figured out how to pretend that I had caught up. I remember that I struggled severely with every new chapter or subject and then, at exactly the moment I did "get it", the teacher always said, "Next chapter!"

My parents took me to the doctor to get diagnosed when I was 5. I thought that they were angry at me, for the next 9 years.

I am 69 and found out about Asperger's five years or so ago. I mentioned it to my daughter that I may be Aspie, and she laughed. I mentioned it to a couple other people that "know" me... they couldn't see it.


I think my Mom was an Aspie. She was a walking dictionary. A perfect speller, who typed 80 words a minute and wrote beautiful shorthand. She would do the NYTimes crossword puzzels with a ballpoint pen. She was a fervent Christian Scientist, and didn't go to doctors... or take me or my sister to doctors until we were in 3rd and 4th grades. She was really nice and kind, but had NO friends. She operated on "principle." She did good. Never lied or had a strong opinion about others... things like that. I have copied her. I have learned to look people in the eye, not to rant, not to share even, and to ask people about themselves... it's a long list. But I ended up working and living by myself...

Over the years I had many contacts with my xwifes psychologists, and psychiatrists... and I am glad that I never had a diagnosis or had to sit and talk to them for hours. I can see no benefits from having them in my life.

Yes. My psychologist interviewed my father over the phone (he lives out of state). Mostly she asked him to describe what I was like as a child and young adult. I wasn't sure if what he'd have to say would help at all since he was always telling me all of my life, "You're just too smart." He and my step mother have always said the same things about my kids, who are all on the spectrum, so I figured, "Yeah, he'll be a lot of help, right."

Turns out he had some pretty surprising things to offer. I got to read them in the report. Quite a few things took me totally off guard because I wasn't even aware of them. Monotone voice, lack of eye contact (I knew about that one), no gesturing and no body language to speak of, socially inept (I knew about that one too), and a lot of other things I can't remember right now, but that I didn't know about until I read them in the report.

What he told her actually swayed her diagnosis. If she had to go only on the interview she had with me and the checklists I filled out, she probably would not have diagnosed me with Autism. I've learned to hide it pretty well it seems.

I was taken to a shrink at around the age 5.

I was never told I was diagnosed with anything, because I never spoke, but shortly after this I remember my parents had posted pictures with words on everything so I would know where to find things and where to place them. Before going out in public she would show me pictures and give me talks about how I should act.

My mom knows I am different. She knows I am extremely sensitive and get overloaded. She knows I am shy and I worry. She knows I am backwards and misunderstood. But she will not admit that I am a little autistic. I am just wired differently.

I think partly because she herself is on the spectrum and another part is because she knows how close I am to being normal and doesn't want a label to bring me down. What you don't know, can't hurt you. You know? (WRONG!)

I'm only saying this because if you are not diagnosed, or are diagnosed and family don't believe you, try to be ok with it. Deep down they probably know but don't want to admit it.

Last edited by Lynners on 04 Feb 2012, 2:52 am, edited 1 time in total.

That's very interesting. Do you know if they ever interview grandparents? I lived with my grandmother from 2-8. She's never pointed out a single thing wrong with me, but then again, she's always been my biggest fan and I doubt she'd ever say anything negative about me. Reading that your father had a lot to say that you weren't expecting makes me wonder what my grandmother would say in a phone interview. Hmmm.

My parents were involved in my diagnosis (at age 22).

They weren't asked to talk about me negatively, they were asked to describe me. The fact that the traits were associated with Asperger's was never posed as being possibly negative. It wasn't "your kid is weird" it was "does this describe your kid?"