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.

Yes you should have told him years ago, but you didn't and you can't change that so don't worry about it.
I'd just come right out and tell him.

I don’t know how to explain it properly . He has an idea what “ autism “ is and he won’t see how it relates to him in any way.

I struggle so much with this .

It's hard but you have to tell him.

I'd start with how he sees himself.
"You know how your brain works a bit differently and you're a bit geeky? Do you know why that is?"

Then go on to explain that when he was 5 you were a bit worried about him and the doctors did some tests. These tests showed that he has Apergers syndrome a high functioning type of autism.

The NAS may be a good place to start.

www.autism.org.uk/about/what-is/asperger.aspx##See

It may be he already suspects and has done a bit of research.

Thank you.

I find these links hard and a bit bewildering to read because very little of it seems to relate to my child in any way. That’s why I found it very hard to accept the diagnosis .

I know it’s a spectrum and everyone is different . But if I read that or show that to him he will say “ that’s nothing like me “ . And he’s right 95% of the time.

Whereas the dylslexia dx made total sense and it was a relief to finally know what the issue was. It explained so many things that didn’t make sense before .

This diagnosis feels like some terrible burden that I have to place upon him.

Sorry if that doesn’t make sense. And sorry too if I’ve said anything offensive or upsetting to anyone .

Keep it a secret forever then.

I’m sorry if I’ve pissed you off Captain. I’m just trying to understand how to do what’s best for my child.

But he wouldn't have got a diagnosis if he didn't fit it. How did he come to get referred in the first place? Did you raise some concerns or did school?

You've not pissed me off, but if you think this is some horrible burden that is so terrible in revealing, and a diagnoses that barely fits then don't.

He was referred by the teacher in reception. He had very unclear speech and she couldn’t understand him. He had a very short course speech and language therapy sessions and then they stopped and said he would grow out of it. Which he has.

The things I recognise are going on and on about his own interests and not picking up that others are bored.

And he’s not very tactful.

He had some sensory issues but has grown out of most of them. Then only thing that’s left is the socks and being a picky eater.

He understands sarcasm and irony. He doesn’t take things literally. He’s creative and enjoys art and writing stories. He makes friends and gets invited to parties and on play dates.

Sometimes I wonder if he’s more like a girl with ASD, that’s he’s good at compensating .

Or we ( his siblings and parents ) are all on the spectrum too so can’t recognise it.

Or we are so used to him he just seems normal .

Normal?
Look don't take this the wrong way but you really need to get a better grasp and understanding of this before you try and explain to your child, please do some research....if your attitude is that autism is a burden and he isn't quite normal I'm not surprised you are having trouble telling him.

Try researching autism in girls if you think he might be good at masking.

You say he has friends at school. What about at home?

I’m sorry if I offended you again captain. I should have said NT. It I meant normal in the literal sense of average or commonly occurring ( within our family ).

And I know I need to understand more, that’s why I’m posting on these boards. I’ve been a Mumsnetter for more than 10 years and I never venture here because I know nothing. My only experience with my other children is very severe disability ( sorry if that annoys anyone again ) so DS seems just fine to me .

Yes he has friends at school. We live in a rural area so the only kids who live near us are also at the same school. Is that what you meant ?

He’s very accepted at his small country school. I fear it won’t be the same at High School.

He’s definitely quirky / unusual / eccentric. But that’s normal ( sorry I used that word again captain ) in our family, we are all a bit weird . If we lived in some cool city area we would have a proper modern label like gender non conforming . Or some similar bollocks.

What I meant was does he spend time with friends outside of school?

The NAS have a very useful and short book on telling your child about diagnosis. I ordered it from their website.

You might also like 'My Autism Heroes' which is probably ok for his age group to give him something to read which is inspiring about his difference.

I read 'Neurotribes' by Steve Silberman (probably!) which is a very entertaining and positive book, with lots about the links between stem subjects and autism - again in a positive way.

Yes he sees his school friends on play dates . They all live a car journey away, he can’t just pop round to their houses. They come here and he is invited there.

Thank you outputgap, that’s very helpful. I will check these out tonight.

Also check out Chris Bonnello on YouTube. Something may resonate. Have a look around on YouTube. There is lots there, and every kind of person on the spectrum you can imagine. Hopefully you'll find something that fits!

It absolutely can be harder to see 'the autism' if your whole family are potentially autistic/otherwise neurodivergent, and I understand that as I missed loads of 'signs' in my ds because it turned out I'm autistic too. He's 14 and was diagnosed at 6 and I did tell him straight away as he was having significant problems and needed to know why he was different. He is also very creative, clever with language and has friends, but he's still autistic. I think stereotypes have been especially harmful and often mean we think autism is one thing when actually it is massively diverse.

I do think you need to tell him he has a diagnosis, and I would show him Rosie King's YouTube videos, 'My Autism and Me' and her TED talk. You should watch them first! Neurotribes is a monster of a book and is worth reading but a lot of the same ground is covered in Roy Grinker's 'Isobel's World' and I would also recommend Mike Stanton's book 'Learning to live with high functioning autism' (though I detest the 'high/low functioning' prefixes).

Not telling him (and him potentially finding out himself at some point) sends the message that autism is something to hide and I really don't think that's what you really think. I suspect you've just got yourself in a bit of a pickle and it feels hard to resolve.

Do you now think that it is a diagnosis that is correct? You've held back for 5/6 years, because of doubt, is that doubt still there?

I only ask because my dd is in the (very long) process of having her diagnosis (given at 3/4yo) removed.
They don't call it a misdiagnosis, it's got some other wordy name.
There were other issues effecting communication which resulted in a presentation of behaviors that looked like autism but wasn't. (She no longer meets criteria for diagnosis).
If you have a big enough doubt you can ask for him to be reassessed.

FRusso - I’m really not sure. Lost of things that we were told were diagnostic have now changed

Eg he didn’t like football
He liked trains
His creative writing wasn’t good
His accent was wrong
The teacher couldnt understand him
He held his head at a funny angle

Some of these things seemed bollocks to me at the time and now even more so.

But it’s true that he’s not your average kid. And I fully accept we are a weird family by the standards of the people doing the assessing. Which probably means we are on the spectrum too or we woudo accept what they are saying.

If the label helps him understand himself or other understand him or gets him help he needs then that’s fine. But otherwise I’m not sure of the point if it only carries risk.

I’ve ordered some of the books recommended up thread ( Thanks ) and will also check out you tube.

Frusso - did you have doubts about your child’s diagnosis at the time? And have things changed in her that they have agreed to change the DIagnosis ?

For examples, one thing was that my child didn’t hav the local accent when he started in nursery ( because we don’t ). Of course after 6 years in school he has it now. This seemed perfectly obvious to me . And I also objected to the the value judgement that anything apart from the local accent was “ weird “.

Ditto not liking football. He didn’t play when he was younger because he has a visual impairment so couldnt see the ball until it hit him in the face. It’s much improved now ( surgery and different specs ) so now he plays every lunchtime.

And I’m not sure why a 5yo liking Thomas the talk engine is pathological. All his siblings liked it too at that age.

His language was excellent at 4 but his speech was very unclear . So and they put him in a nursery class with children who were non verbal and said he was odd because he didn’t play a lot with them.

Ha ha I see that my spell checker doesn’t like Thomas the Tank Engine

Eg he didn’t like football
He liked trains
His creative writing wasn’t good
His accent was wrong
The teacher couldnt understand him
He held his head at a funny angle

None of this is diagnostic criteria

How’d of they diagnose him? Did they not do the ados?
The reasons you gave why he has a diagnosis for asc do not make sense.

That’s some of the things they told us. Yes they did an ADOS-G model 3

They noted that although he appeared creative ( to his class teacher) the SALT ( who saw him 4 times ) said he was repeating stories that he already knew. When In fact he was making up stories about The trains in TTTE .

They were very concerned about the trains , I have no idea why. He wasn’t just interested in one aspect eg the wheels, which I know can be a sign of ASD. He just liked TTTE like many kids his age.
Then he moved on to model trains.
Now he likes super cars.

In the ADOS report they noted that

he showed no sensory issues
no unusual hand or finger mannerisms
did not echo any words or phrases
wasn’t routine bound
Was not phased by changed in his daily routine
was able to show understanding of how he or others feel in real situations or cartoons
Was able to talk about things that make him happy or sad
Used a range of creative ideas when playing with character toys and when creating a story with a range of objects

The concerns were

The clarity of his speech
Speech sound errors
The pitch of his voice was too high
Accent
adult phrasing of speech
That he wasn’t motivated to participate in the 4 sessions of SALT he had ( she was terrible , was a trainee and had no rapport with him. She also showed him little cards which we now know he couldn’t see )
He found it hard to cope with transitions in reception
He didn’t name any particular friends in school
He Didn’t pick up on social cues to stop talking
Needed support moving from one activity to another
Didn’t maintain eye contact ( that would be because he has a squint and a visual impairment )
He was very fidgety during the assesment
He found it difficult to answer questions when he was drawing
He swung on his chair and slid off it
He appeared impulsive

Of these, the only things that still persist at age 11 are

He talks a lot and isn’t good at taking turns in talking
He gets very engrossed in an activity and needs a 5 minute warning that he will have to stop soon
He talks fast when he is excited

I’ll admit that I know little about it but if it’s ASC surely it would persist and he wouldnt grow out of it ?

We now know that some of his lack of concentration was because he couldn’t see what he was being shown ( because of his short sightedness ) , it was moving about ( he has a visual problems called nystagmus ) and the images were too close together ( he couldn't cope with a crowded visual field ).

And he has severe dyslexia .

So to me, so much of the diagnosis seems to rely on things that were transient ( like his speech problems ) or have other explanations (visual impairment , dyslexia ).

Which why I had doubts then and still do.