Parents, why don't you tell your kids about their diagnoses?

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Once we started taking Dylan to OT and the "feelings doctor" we had to give him an explanation. Dylan is 5. I tried to tell him in a way that he would understand. He has heard the word Asperger's, but does not ask what that means. He just wants to know why I have altered his routine. We explained to him that his brain is very smart, but he needs to learn what his feelings mean and how to show them without having a tantrum all the time and that his hands don't work well so he has to go to OT. That was all it took-he is satisfied with that for now. We will explain more as he seems ready to know.

After realising that Jazz (my partners daughter) was maybe a bit different a year or so ago we started the process to get her assessed. At that time, although we'd already pretty much worked it out for ourselves, we didn't tell her anything. She was happy enough to go see doctors and whoever else she had to see without really asking why and we felt it was better to say nothing than give her information that we might have to correct later. She made our lives pretty easy by being completely disinterested at that point, obviously if she'd asked we would have been forced to say something. Finally got her dx 2 weeks ago, and at that point she was asked if she wanted anything explained to her, and she said no. She wasn't upset or hostile to her dx, just completely indifferent, like it really had nothing to do with her. Last night I was looking after her as mum had to go out. Halfway through a completely unrelated conversation she announced ' I want to know more about my disease'. I started by explaining that it wasn't a disease or an illness, just a condition that meant her brain worked a different way to most peoples, like her brother having dyslexia. We then went on to discuss things that were good about it, like the fact that she's very good at maths and attention to detail. Then the things that she has trouble with, like her limited eating habits, poor concentration, not being able to ride a bike etc. She was relieved and happy to discover that some of the things she has problems with are not 'her fault', but I also tried to make it clear that it can't be used as an excuse for bad behaviour. I feel that so far telling her about her dx has been a positive thing, though it's a new ball game for all of us and sometimes we don't know the right way to handle her. I suppose the decision of telling them or not depends on the individual child, but if at all possible I'd swing in favour of telling them.

For me really it is because, no one explained them to me. They would say, "This is what he has, and this is the medication and then that was it. Everything I know and I am still learning is from the Internet. We have a psychitrist and he sees us for 2 mins. Just asks about the meds and that is it. I wanted my son to go to someone he could talk to, but the doctors around here only care about pills not talking. So, it is not about not telling them, but for me it is how do I explain something that I really don't know and I am still learning about?

twohearts

twohearts~ all i can say is, get out there and get enough information you can get so that you're prepared to discuss it with your child. at some point, your child will want to know why he has difficulties. there are wonderful traits that aspies have that your child should learn about !

I was diagnosed pretty young but my parents just didn't tell me. I can understand why they didn't, because if you think you'll have a problem socially you will. But apparently nature beats nurture, because I have zero people skills and could never stay in school without being expelled. After being kicked out of essentially everything I ever enjoyed, THEN they tell me.

Hell, If I was so knowing I'd kiss you! I just went to a meeting localy for Attention. We had a very successful meeting and a lot of feedback.

Great work!

Hi Everyone, I personally only got a diagnosis for my son on the 15th March. We were told our son had Asperger's Syndrome, ADHD and Dyspraxia.
My son was there when we found out and we have never not been honest with him. he is only 9 years old but mentally seems so much older. He has asked a lot of questions and together we have searched for the answers together which he seems content with.
At first he was a little upset and did not know what all them long words meant and we sat him down and explained and though he is far from being all for it he is no longer anti having special needs or learning difficulties, like i told him he is 1 in a million and i would not swop him for nothing he is priceless.Tracy.

My children were an active part of the whole diagnostic process. They are 16 AS, 14 NT, 13 AS and 6 ADD and they all read books on the subject and see the same therapist , even the NT 14 yr. old and the ADD 6 yr. old. It has been a topic of dinner conversation on many occasions and the subject of a few jokes and jabs when we are shopping or going about our day. I felt that if I hid it from any of them it would make it taboo or something far more serious than it is. It is nothing to be ashamed of. The kids have all taken ownership of their neurobiological differences and their unique abilities.
They know that it is a part of the fabric of our family. All four of them are very strong advocates for other special needs people and can answer any questions about Asperger's or ADD. It is amazing what even the young children can do when given the opportunity and the right information.

I used to think it was really cool of parents not to tell their children. Because I think sometimes as kids get in their teens they start using AS as an excuse to refuse to socialize with others, or get a summer job, take out the trash, feed the dog or bath daily. But then I met a woman who has a 5 yr old Aspie son. The boy has actually been kicked out of kindergarten and the teacher yells at him in front of the other kids what a terrible human being he is. My friend has not told her son that he is even different. Now I worry that the little guy is being harmed because he doesn't know he has AS but its been pointed out to him how horrible he is. There are far worse things than AS that this child may have thought up himself to explain why he is kicked out of kindergarten. I mean he probably thinks he has something more horrible like some term he has picked up off the tv like psychopath, evil, ret*d, etc. So now I wonder if its that good to keep it from them. I guess it depends on the circumstances and how well they blend in with their classmates.

We have not yet told our son (8). I guess for us - we thought it was important that WE fully understand what we are dealing with before we attempt to explain it to our child. We wanted to be able to provide him with accurate answers. We will tell him - we just haven't found the right time yet.

And, it honestly has nothing to do with us thinking that there is something "wrong" with him or being ashamed or anything like that. It has nothing to do with me being in denial (I've known for years....), it's about what's best for him.

This teacher sounds abusive and damaging. Is he still in her class? I would think she should file a complaint with the school principle and if it goes nowhere then with the school board. How awful!

Honestly, I "feel" for the teachers of difficult students, I have seen first hand how disruptive and problematic they can be, this one teacher at a christmas concert was just "worn out" by a challenging hyperactive little guy who could not keep his hands to himself or stop from jumping around, yelling out uninvited comments, or poking other kids. That said, if these teachers "loose it" on these kids, that is not right either. They need help and support, perhaps a full time EA. If a teacher is yelling at a child that they are a horrible person, then that assistance is urgent! How can the school or school board deny it? I would not send my child to a school like that until a full investigation and accomidation plan is in place! I don't think telling a 5 year old he has AS is going somehow prevent a child from developing major self esteem issues in that sort of environment!

Since diagnoses hardly matter, does it matter if a child is diagnosed with Asperger's or Schzoid type personality disorder. (not that I am sure of anything at this point, but most things look like Asperger's.

Even my son's doctor is stymied.

My son's older brother got wind of the Asperger/ASD thing (we have books laying around) and read a bit about it AS. Once in awhile, depending on his mood, he'll say "you think everyone has aspergers". But, regardless, he seemed interested. Now, he brings it up once in awhile (humorously). Tonight my son said he thought he had body oder (only seven-years old). His older brother said "Maybe aspies get body odor early" and we chuckled and considered it. Maybe a glandular thing? Anyway, I didn't think he had body odor.

Point being, my son is discovering Aspergers in this gradual, informal manner without me sitting him down and formally telling him about his "diagnosis"--seems too serious or unnatural--scary.

equinn

My situation is the opposite. I first heard of AS when I was in my 30s, and am sure I have it. How could I tell my parents what I suspect? I also don't want it going on my records. I don't want to jeopardize things at work.