How do I tell my child that he has Aspergers?

[S0ph1a]

Our son is now 11 and he was diagnosed with Aspergers / ASD/ ASC when he was 5. We didn’t tell him at the time as we thought he was too young and we didn’t really accept it ourselves to be honest. Now we realise we should have told him before now and don’t know where to start.

He’s intellectually very bright and is OK with difference. He knows he has dyslexia as this was diagnosed when he was older so he was part of the process.

He’s one of three pupils in his class with dyslexia and they are all very clever so he doesn’t see it as stigmatising. He knows his brain works slightly differently but he can see this has advantages as well as disadvantages.

He sees himself as smart and “ geeky “ and slightly eccentric. He knows he is different from many other kids because he likes science and engineering and not football. He has friends at school and has no behavioural problems.

I am scared to talk to him about it and also feel guilty that we have let it go on this long without discussing it with him. For most of the time we don’t even think about it as he manages just fine at school and at home.

Any suggestions of books / websites / blogs would be good - he's the kind of kid who also likes to research things himself.

No, you're correct, if he had ASC he wouldn't grow out of it.
My other dd has ASD, and as she's got older it is more noticeable, and makes it more noticeable that the one that has been reviewed doesn't.

If you had the ASOS before the dx of VI, it would make sense that it was a misdiagnosis. Because a lot of what you've described that they noticed could be explained by the VI.

Yes I had reservations at the time of dx, our HVSS advisory teacher did as well, but at the time dd ticked a lot more boxes than your ds did. And we needed the dx to access help, it opened doors that we needed opening. We come under the H part of HVSS, (just to explain the unusualness of having ours removed) when the HI was treated effectively the behaviour changed, very significantly, over 1-2years there's still the odd trait, (likes warnings of activities ending, likes clear instructions, food issues.) but there is now nothing that makes her stand out in a room full of HI dcs, everything she does that isn't quite NT can be explained as typical HI behaviour. Although before the HI was treated effectively I was for a while certain that she was, most of the time, although significantly more atypical.
Undiagnosed sensory impairments can effect other behaviours quite significantly.
You now know that there was a VI that could explain a lot of the behaviours, I would say yes, you can ask for ds to be reassessed.
I don't think you are a case of refusing to accept a diagnosis that is meant to be there. I think there is enough reasonable doubt for you to be questioning it.

Thank you Frusso that’s every helpful.

It was obvious from birth that he had a very bad squint and he has surgery at age 2, so long before the diagnosis of Aspergers. The fuller Vi diagnosis came Later.

I think a big problem was that no one seemed to understand the impact of his VI because they were so focussed on his speech.

So the SALT have his a Little board games likes snakes and ladders with tiny cards which he couldn’t see properly . So he tried to talk to her about something else instead and she became angry and shouted at him. So he hid under the table and didn’t want to go back.

They put DS, a very verbal child into a group with non verbal children ( some of whom obviously had other significant learning delays ) and decided that they would play together because they all had “ speech and language difficulties”.

But DS just played on his own because he wanted to put the toy cars in and out the garage race them around , pretend they were from the Cars movie. And the other kids wanted to eg hit them repeatedly off the wall because they liked the sound .

Does that make sense ?

I’m interested in what what you say about the benefits of the diagnosis, especially as DS moves school this summer.

How does he deal with transition? Do you think he will cope OK without additional support in the transfer to secondary?

My DS masks very well in known situations but it's big transitions like infants to juniors and new childcare settings where he struggles most

He’s been fine with moving from one class to another in the same school. And he’s been away on several residential holidays ( not school based ) without any problems.

He will get extra support during the move to high school because he has dyslexia, Aspergers and a VI. The high school have a lot of support for Kids with dyslexia, He gets to do all work on a lap top, extra time in exams, digital exam papers etc etc

He will be fine academically in high school but I’m worried how he will cope socially. He’s moving from a small village school to a huge suburban high school.

He’ll also struggle with organisational skills as is common with dyslexia.

Can you get him reassessed if you have doubts? Maybe go privately? You could tell him its an assessment for what help he'll need with dyslexia in his new school.

If he does have autism then the sooner you tell him the better. He should feel comfortable with who he is - if its kept hidden too long he might think you are ashamed of it.

I find this comic very good for understanding how autism affects some people very differently from others
themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

I agree, while you have so many doubts it doesn't seem the right thing to tell him, but you need to resolve it so you can tell him with a clear unambiguous message IF he is on the spectrum.