How and when did you(r kid) get diagnosed?

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I would like to know how you got your diagnosis. (If you're a parent, I'd like to hear how your kid got diagnosed.) Who diagnosed you? How old were you? How did you come to be evaluated? What was going through your mind? To whom were you referred, if anyone? Anything else?

My 9yo son was formally diagnosed last year as HFA. The child psych told us to tell people he's an Aspie, as he behaves like one and there "less stigma".

I'd suspected that I might be an Aspie for a while, then I got given Tony Attwood's book on the weekend by a diagnosed Aspie with two kids on the spectrum.

It was like I've been doing a jigsaw puzzle for 25 years and someone finally showed me the lid.

She told me that she and her husband both suspect that I'm an aspie. So, self-diagnosed, but will be seeking a formal diagnosis as soon as I can afford it.

Who diagnosed you?
- Local psychiatrist

How old were you?
- 26

How did you come to be evaluated?
- Said I thought I might have Asperger's Syndrome and wanted an official diagnosis.

What was going through your mind?
- Was wondering if I was right, and thinking that if I was wrong what else it might be that I had.

To whom were you referred, if anyone?
- Started off with a local counselor who referred me to the psychiatrist that also worked in his office. I didn't want to start with a counselor, but they wouldn't let me see a psychiatrist right off the bat.

Anything else?
- I was relieved that I was correct, and was somewhat nervous to see what my family would say when I told them. I had never mentioned it previously since I was only self diagnosed previous to that, and didn't want to say anything until I was sure.

My sister was receptive and tried to be understanding. My dad had a "great, you're funny in the head," attitude about it. And my brother said something along the lines of "now you have an excuse for your behavior," and seemed to be jealous oddly enough.

I was diagnosed almost two weeks ago, so I'm still dealing with it. It was suggested to me many times over the years by several friends who work with special needs children that I have autistic traits and behaviors but I never thought anything of it. I've always thought that I might have Avoidant Personality Disorder but never cared to get diagnosed. A few months ago, however, I heard a discussion about Asperger's and a light went on. I went to see a psychologist and listed my main concern for going as "feeling emotionally flat all the time" (which is true).

I didn't mention Asperger's during my first few visits and tried not to skew the conversation in that direction but after three sessions (not including the intake visits) I finally brought it up and the psychologist told me it was something that had crossed his mind. He sent me to a psychiatrist at a clinic that specializes in autism spectrum disorders and they did lots of tests, got statements from my parents, etc. So, here I am in my 30's a newly dx'd aspie.

I've gone from thinking I was somehow mentally defective in the first few days to now starting to feel relieved and oddly happy. The thought that's been going through my mind the last few days is that I don't have to force myself into impossible situations anymore. Not sure how I'll feel six months or a year from now, but right now it's all very raw. I feel like I normally do after a meltdown--shaken but relieved it's over.

Eldest: A psychologist did the initial testing when he was 9. It'd always been obvious that something was very different about him. He did a LOT of stimming and had constant sensory melt downs right from infancy. At first he was dx'd with ADHD and AS. We were sent to a psychiatrist for treatment. Later bi-polar and psychotic disorder-pdd were added but the Dr didn't tell me right off. I knew what symptoms we were treating but didn't know what labels he'd written down.

Middle Son: ADHD, when his brother started treatment. AS this year at the age of 11 by the same psychologist. I'd never thought anything was "wrong" beyond the ADHD and until this year had no reason to get a psych workup. He'd been kind of unhappy and struggling with certain assignments and friendships. In retrospect the AS was very obvious, but it never clicked as something diagnoseable to me, so I was surprised.

Little Guy: ADHD and PDD-NOS by the psychiatrist when eldest started seeing him after his dx. He didn't have a full workup, but I think that would have been hard since he wasn't talking yet. He had a lot of quirky behavior, major sensory melt downs, and was non verbal so it seemed like a solid dx. This year I took him in for a full workup because he was doing some really advanced stuff intellectually and I wanted to document it so we could try to get the right services at school. The psychologist did the full workup including a couple AS tests, and he came up as not even close to being in the spectrum, but highly divergent and most definitely not NT.

Me: ADHD when the kids were getting dx'd with/treated for ADHD at the psychiatrists. I'd been struggling with it all my life but as the Dr asked questions in order to dx the kids it was obvious what my problem had always been. Life is much better now.

My younger son was always different and that lead to problems in school. By first grade he always managed to be annoying somebody. Before that he was just "a handful" and "different from the other kids". Initial guess by the school and doctor was ADHD, but he didn't respond to treatment. Changed schools, and he got a great 2nd grade teacher who could work with him. Not so lucky in 3rd grade, he got a "my way or the highway" teacher who thought all problems would respond to punishment. That got ugly in a hurry. Started him in home school that year on the advice of a child psychologist who gave us a Sensory Processing Disorder diagnosis--that at least lead to OT which actually helped some. Had evaluations done by three different psychiatrists and psychologists over the next couple of years, until one of them (a public school psychologist) suggested we take him to another psychiatrist who was "really good with these sort of issues".

That was great advice. Within a couple of months he was finally diagnosed at age 11 (a year ago now). ADD, OCD, GAD, all in mild form, SPD and AS big time. A few visits later, the Dr. looks at me and says "I believe you're an Aspy too, dad." I was 47. Haven't felt the need for a formal diagnosis; it's really obvious now that I know what AS is. If you read "Look Me in the Eye", especially the last few chapters, you've read exactly how my mind works. Although my life has been much less spectacular than J. E. Robison's--I got along so well with my teachers that school became my haven even though I couldn't stand my classmates (well, there was this one really nice dark haired girl--but the story of how I stalked my future wife will have to wait for a different thread). I eventually "grew into"my AS and don't need any particular help, so why bother applying for my label. What I missed all those years can no longer be had, and I've gotten pretty good at getting along in the NT world. Although a lot of that comes through avoiding situations I know I won't handle well. I'm settled in a career (Aerospace) where technical ability is more important than social skills--people work at getting along with me now, which is nice but still a little spooky. But I've known for years that I need to stay off the management track.

Every time I learn something about my son, I learn something about myself as well. Knowing that I'm an Aspergian has been liberating in ways I never imagined possible. I'm not an oddball after all, just relatively rare.

Thinking about having my older son tested. Like me, his response to social stress is to withdraw, and that doesn't upset people at school. Little brother acts out, and that gets the school's attention in a negative way. But as big brother's become a teenager I see more and more of what I now know are my Aspy traits in him, and I might be able to make his teen years less painful and depressing than mine were.

My daughter was diagnosed with PDD-NOS when she was a kindergartener. It was mainly her language delay that got her noticed. Her pediatrician thought this delay was due to hearing loss or perhaps an auditory processing disorder. He sent her to an audiologist many times for every sort of hearing test that exists. After performing the umpteenth variation on a hearing test, the audiologist told me that her hearing was absolutely fine, she processed sound absolutely fine, but that she seemed to be like somebody who was on the autism spectrum. The audiologist was pretty familiar with the autism spectrum because autistic children with language delay and good medical coverage tend to wind up being seen by an audiologist at some point.

On the advice of the audiologist, we took her to a psychologist who diagnosed PDD-NOS. It was that rather than autism because her eye contact is sustained and intense. She doesn't avoid eye contact. She embraces it. The other person generally looks away first. I've seen her get into staring contests with cats and she always wins.

Even though she didn't tick off the "avoids eye contact" box on the testing menu, she still seemed otherwise quite autistic to the school system. So I took her to an evaluation team and they diagnosed her as "autistic". Not Asperger's Syndrome because of the language delay and because she scored rather low on an IQ test.

When I post anecdotes about her here, people tend to assume she has Asperger's Syndrome unless I specifically say she doesn't. This is because, despite her language delay, she ultimately became quite talkative. And despite her abysmal IQ score she says and does things that make it seem like she should have scored higher (except for academics...sigh). If you go by my WP anecdotes, you'd be expecting a witty Aspergian. If you go by her medical file, you'd be expecting a classical autist who stims and stares and little else. If you meet her in person....I have no idea what you'd think.

I got diagnosed at the age of 16. I had problems in school (not my grades, but other stuff) and I went to a psychologist who told me to go to a psychiatrist.

I already knew there was something wrong, never thought about autism or an actual disorder though.

Who diagnosed you? How old were you? How did you come to be evaluated? What was going through your mind? To whom were you referred, if anyone? Anything else?

My daughter was diagnosed by our pediatrician. Her 'odd' behaviours were noted starting in kindergarten, where she seemed to avoid doing things with the group, and her communication skills seemed lacking. In grade one it was much more pronounced (she

got in trouble in phys ed class because she would just stand there, chewing on her fingers while the rest of the class participated in games). Finally, in grade 2 (this year), an astute teacher realized she wasn't typical, and had her evaluated psychologically. At first it was her auditory processing that was suspect, but it was found that she is very gifted, as well as AS. I didn't really suspect that she was gifted, as her communications seem to be affected by the AS.

It was almost a relief to have the diagnosis, because now we understand why Sammy's the way she is, and there are ways to help her out socially. It's understood that she will never be NT, and that's ok! As long as she remains as happy as she is now, well, that's the main thing.

I find it hard to watch her on the sidelines at social events, but it doesn't seem to bother her at all. I hope that's the case...

I was diagnosed with Asperger's when I was 12 by, I think, a clinical psychologist. I was referred to one because I was being very moody that year and I had a number of anxiety problems. My parents told the psychologist about me and about my behaviors, and that's when he diagnosed me. At the time, I was too young to really care much. I think I was like, "oh, so I have Asperger Syndrome" and moved on.

However, I think I was always suspected to have had autism. My mom said that by the time I was three, I had stopped talking, and my only speech was incoherent babbling. My mom took me to be evaluated by the local preschool, and I was accepted into its special ed program.

Thanks for the responses, everyone!

Janissy, I can beat cats in staring contests, too. I wonder if people on the spectrum might not actually have an aversion to eyes, so much as essentially the same response to eye contact as nonhuman animals have.