Diagnosis at 13, finding out at 20

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OK, I have held off on posting this because I could not think of the right wording, but I was thinking about it earlier and I wanted your opinions so hear goes.

Roughly a week before I joined here I found out courtsey of a psychologist (who I only had to see once, don't ask why) that I had AS. He showed me a paper from another psychologist that I saw when I was 13 and it had "Asperger's Syndrome" clearly printed in the diagnosis box. I was dumbfounded that 7+ years could go by and nobody (parents, educators, myself) knew about it. That would be something you would tell a parent, would it not? I was thinking earlier how school would have been different if this was known. Maybe I could have gotten better assistance if "diagnosis of Asperger's Syndrome" was on my IEP instead of "diagnosis of ADHD". What can you guys make of this?

Uh...have you talked to your parents? Are you sure they didn't know?

Yes, they had no clue.

That is pretty screwed up. Is that even legal? Not telling the parents about something like that?

I'm pretty sure that if it was a diagnosis, and not just an unsupported theory on the part of that therapist, that it MUST have been communicated to your parents in some way. I was given a myriad of wrong diagnoses from age 8-ish to 18 (none of Asperger's or Autism!! !!), but my mother (no father) was made aware of each. With that said, a doctor may have some theories, or ideas, of which he/she might make written notes in the file, but those may not be actual diagnoses. In those cases, naturally it would not be presented to parents.

This is a tough situation for you, as you have to either face a possibility that your parents did not want to accept something like that at the time, or perhaps you were the victim of an unprofessional-acting therapist. Either case is a bad deal. This being the case, the past is the past, and can't be undone. In my case, I finally was ACCURATELY diagnosed with high functioning autism at age 43 ! This after all the trouble as an outcast in school while taking wrong medications, and finding frustration in wrong therapy and counseling ideas. And of course a couple decades in the workplace not fitting in, and all that stuff. My wife has a 2-year-old nephew who CLEARLY has a form of autism, and his "perfect" parents won't hear of it. Poor kid is going to face exactly what I did, and perhaps what you did.

Charles

I was diagnosed at 5 and I found out at 15. I wish that my mum would have told me sooner.

I don't know that they would have done much differently. Though a diagnosis of AS didn't exist at the time, my IEP was pretty much what they do for children with AS now days.

I wish that I would have been told sooner. I wouldn't have felt that I was a bad kid.

That seems a bit slack. But still, you had an IEP so your educators must have known there was a problem. I just struggled along quietly failing everything.

Did anyone ever even look at your paperwork? How did your parents miss it? That sounds suspicious to me. Most of mine just hints at things, but someone in Chicago slapped an AS label on me when I was six. My parents finaly told me when I was in my early teens. I wish I had known earlier.

My mother claimed not to know, but I smell something fishy. My mother is not to be trusted, but I did not push the issue the last time I spoke to her, and maybe I should not push it any further and leave it as is just in case she is laying to me.

I think it can often be the case that the parents don't tell the kids as a weird way of protecting them. Or they can sometimes be in denial themselves.

I was diagnosed at 14 and I guess I heard people using the word, but nobody explained to me what it meant, so I kind of mostly ignored it. I heard a lot of "developmental disability" and "autism" but I had no clue what all that meant until I began meeting other autistic people in special ed, and really connected with one, so started looking for more information, and only then did it even begin to make sense to me (and that took years).

Of course, when I was first diagnosed, I had such severe comprehension problems that I'm not sure I'd have understood even if someone told me what it meant. So that may have been a barrier. But still, I don't remember anyone sitting me down and explaining it to me at all, it's like they didn't even make the effort somehow. And I had so many different labels put on me at the time that I didn't even really know where to begin to understand them all.

Yes, sometimes parents don't tell the kid because of this weird idea that if they tell the kid, then the kid will become more autistic, or something like that. I've seen them discuss it among themselves before. Others worry about how the kid will take it. But honestly, by far most of the time, I think that whatever the kid is thinking about themselves is probably far worse than "autism" could possibly be. That was the case for me anyway.

I can understand how you feel.

I don't have a diagnosis - I am on the path to a diagnosis now, one step on the way to assessment was a meeting with the mental health team, after the first session they decided to check my records as I had informed them I was in and out of therapy from the ages of 12 to 15. Second session with the mental health team they informed me they were fast-tracking me straight to the AS/ADS diagnostic team because apparently on my records ALL the therapists I had seen in my teens had suspected Asperger's. Being therapists they had to rule out social anxiety first, I left because the therapy wasn't helping me, if I had stayed I would have had the assessment.

I was a classic example of an AS/ASD child, if we had been informed we would have KNOWN, we'd have pushed for diagnosis and things would have been very different for me growing-up. I don't think my mother was informed - in your case I do agree with what was said, often parents won't inform their kids, either worried that it may mess with your head, worried that accepting diagnosis means there's something 'wrong' with their child, etc. On the plus side...at least now you know!

sounds like one of 2 things could have happened to me. either your parents were told and decided they didn't want to tell you or didn't agree with the diagnosis, or they didn't follow up with the therapist to find out the results. i can see either of those things happening easily. maybe the doctor went through your stuff and decided on a diagnosis and your parents just didn't go back for more appointments so they didn't find out. either way, it's you who is effected by it and the mistake was made on your parents end. i can imagine how that would feel and that's why i have always made sure to explain to my kids why they are going to all the appointments and let them know everything i found out even though they are too young to really understand. i explained it to them they think differently than other people because their brains don't work the same way and made sure they know they can still learn anything they want to but some things might be easier or harder for them than for other kids.