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Here are some suggested organisations that offer expert advice on special needs.

Told my child he is autistic
7

CaptainBeakyandhisband · 17/05/2022 20:30

I have an 8yo with an Aspergers diagnosis. We have known since he was 5, but have never really told him. For the past few months occasionally after/during a meltdown he has expressed concern/awareness that there is ‘something wrong with his brain’. Today he lost the plot over something trivial and after an hour or so of carry on he asked why he is like this. I was honest and spoke to him about his autism but now I’m not sure I should have. It wasn’t a bad conversation but I am still not sure whether he has the ability to understand. I also think he might go to school and blurt it out. A few fellow parents know, but there are a bunch more who don’t because it’s just none of their business.

I do think he has a right to know, and also that if we want him to be able to manage his autism going forward he’s going to need to know/understand it. But I’m really not sure I’ve done the right thing…

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CaptainBeakyandhisband · 20/05/2022 17:03

Good challenge, thank you. I don’t have a problem with his autism but I’ve heard other parents express negativity about the diagnosis (‘at least it’s not autism’). I guess I’m worried that they might judge him because of it. Or they might think that he’s not autistic enough, as he mostly presents as NT. they don’t see the extreme meltdowns we have at home, or the huge anxiety he has about leaving the house (linked to a fear of dogs).

The people who do know, and who are friends, are very supportive of his needs. But I also feel like it’s just part of who it as and shouldn’t need to define him. It’s been on a ‘need to know’ basis for that reason until now.

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ADarknessOfDragons · 19/05/2022 23:17

I do see that. My DD would probably also fit the 'aspergers' label (but is just diagnosed ASD). Sometimes she doesn't seem autistic enough, if that makes sense- one of my other children has much more obvious stims for example- but definitely has the communication difficulties, friendship difficulties, can be very demand avoidant at home. Some days I still find myself questioning if she really is autistic, and other days I have no doubt!

I do see you can only tell people once. But again, needing it to not be common knowledge can be seen as viewing being autistic as a negative thing. Why would it matter if everyone knew? He is who he is and that happens to also be autistic.

I've met a couple of autistic adults recently who've told me they're autistic in a first or second conversation with them. Just came up as part of a discussion and it was so refreshing to chat with people who are happy with who they are(one a school mum, another someone local I bumped into on a dog walk and got chatting to)

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CaptainBeakyandhisband · 19/05/2022 22:44

Thanks for your thoughts. Yes. I don’t think it was ever intended to be a secret, just he was still in year R when he was assessed and for us the diagnosis was a bit of a shock (we didn’t seek it out or fight for it like many others have to, and we queried it at the time).

I do think he’s going to need to ‘own’ the information but I’m also acutely aware that he can only tell people once - once they know, they know. I think his school is pretty accepting, but most of the other autistic kids at his school have quite complex needs. He’s not really like them, so as a label it doesn’t make that much sense to him. I actually wish they weren’t phasing out Asperger’s as a diagnosis because the spectrum is so broad I think it would help him to have that categorisation, not because I would have any issue if his needs were greater, just that it seems to be confusing to him as the label autistic is also in use for some of his peers.

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ADarknessOfDragons · 19/05/2022 20:08

It's a good thing he knows! My daughter was referred in Y3 and diagnosed in Y5 (Y6 now). She knew what the assessment was for and we told her on the day of her diagnosis (she did ask). I appreciate she was a bit older at 10 but understanding yourself better is a main aim for us with her.

We've always been clear there is absolutely nothing wrong with her. Her brain just works differently.

She's now awaiting ADHD assessment too and did know the referral has been sent.
She will tell most people she's autistic which I think is great- the more people are aware of autism the better.

We've read some books with her. All Cats Have Autism is one we have at work and I'm sure there are recommendations all over for books for slightly younger children (not done one that with her- we read the Can You See Me? and Do You Know Me? with her but I'd say your DS is maybe a bit young for those- my dd is also very academically able though not been in school for a while due to anxiety)

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CaptainBeakyandhisband · 18/05/2022 12:43

Thanks Sprog, that’s useful. I wouldn’t say it’s ever been a secret here, but it’s definitely been on a need to know basis. All adults who require the knowledge in a professional capacity have it, but when he was diagnosed at 5, there wasn’t really any sign that he could understand what it meant. Plus it was just before lockdown, and home school etc.

regarding telling other people, it feels like a grey area to me - it’s personal medical information and so it feels like we can’t just tell everyone without his consent. But I understand completely that that information changes for children who have greater need for visible support in the classroom and beyond.

I’ve never really brought it up before, and the only reason it came up yesterday was that after the meltdown he expressed upset that his brain makes him do things. That’s a new one for me, so it seemed to make sense. Maybe he is becoming more aware.

He sees a therapist monthly for anxiety/anger so maybe we can work with it there.

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Sprogonthetyne · 18/05/2022 10:34

I've talked to my 5yo about his autism, though he doesn't fully understand the wider implications, my thinking is if it's never a secret, it will never seem like a bombshell. Although in his case I couldn't have kept it secret even I'd tried so it came up in conversations about why he has a 1:1 and that he's moving to a sen school.

My only advice is now you are talking about it with him, is to try not to only bring it up after meltdowns or when things are going wrong. Maybe talk with him again at a more neutral time, and talk more broadly about been different (not wrong or bad) and if you can you could mention any positive (for my DS it's his ability to hyper-focus and remember 100's of animal facts)

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CaptainBeakyandhisband · 17/05/2022 21:34

Anyone around tonight?

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