How did you tell your child about their ASD diagnosis

(13 Posts)
oxen1 Tue 17-Jul-18 16:03:41

I just heard today from the doctor, we knew (and he knows too) about ADHD already, but ASD is such a big new thing and I worry about how he will take it and how his life will be. What did you do? He is 9, and already "autistic" is a bad word at school (I had to explain to him that it's not a swear word or a way to put anybody down but I think kids use it as a slur). It's not a complete surprise but it's still devastating news to me and I dread how it will affect him.

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BlankTimes Tue 17-Jul-18 18:31:39

Autism isn't a terrible affliction you have to dread, so don't let him think it is. He will not be autistic from diagnosis onwards, he's always been autistic, he's the same boy he was before the diagnosis.

He doesn't have to tell anyone and neither do you. You can inform school and make it clear it's his confidential medical information and he does not want anyone else to know.

Would he be happier with the computer analogy, NT people's brains process things as though they use Windows which is really ordinary, whereas autistic peoples' brains process things like a Mac which is a more unique and far and better processor.

Stress, stress and stress some more, different does not mean inferior.

This also is more positive about strengths, read it first, it may be a bit long for him, I think there's a youtube version too. the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Find a list of very clever and successful people who are or who are thought to have been autistic. The more positive you are about it, the better he'll feel in himself.

It is hard to hear a diagnosis because it only focuses on the negative, give yourself time to process that, then look for a way to put it to him in a positive light, in a way you know will make him feel better about it. flowers

oxen1 Tue 17-Jul-18 18:50:13

Thank you, and I know you’re absolutely right. I just see how often autistic people are dismissed and that’s what scares me, how others will perceive him, how he may be discriminated against. Of course he’s the same amazing boy he always has been. And he’ll probably get more help at school, which is great. But I also have worked in education in the past and have seen the side glances when an applicant’s form discloses something beyond the neurotypical. Also, because he’s high functioning, the concerns I had when he was little were dismissed, and now it’s a bit of a shock. Thank you again xx

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LightTripper Tue 17-Jul-18 23:19:13

I don't know if it might help him to know he is not alone but Purple Ella has a nice interview with her son who was 10 at the time on YouTube. They are both autistic (as is one of her other kids). It's a nice balanced video I think.

youtu.be/oCT8F-44TEU

oxen1 Wed 18-Jul-18 07:57:53

I’m devastated because I feel that I have let him down, for the times I lost my patience, for not understanding why he was anxious, for not pushing enough for a diagnosis (when he was little I had raised concerns a few times but one of the excuses by the health visitor was that “he’s a very clever boy that knows how to push your buttons”). I’m very proud of him and his sweetness and honesty and I’m in shock as to how I haven’t helped him any earlier.

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LightTripper Wed 18-Jul-18 09:09:19

Remember though that even 15 years ago kids with the profile of your DS (or my DD) would probably NEVER have been picked up. Much better to find out now before all the teenage stuff hits. All kids have misunderstandings with their parents and struggles in life, and you've put yourself in the best position to help him now and going forward. Don't beat yourself up! If the professionals can't spot it (or are even effectively gaslighting you) it's very hard to have the courage of your convictions.

I was absolutely convinced DD wasn't autistic because she was so like me as a kid. Took me a long time to figure out there was more than one answer to that observation grin

oxen1 Wed 18-Jul-18 10:40:53

Thank you LightTripper

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oxen1 Wed 18-Jul-18 10:42:59

....posted too soon!

Thank you LightTripper and BlankTimes, your posts were both enlightening and also made me smile. It means a lot. All the best for you and your families xx

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BlankTimes Wed 18-Jul-18 14:22:09

Remember though that even 15 years ago kids with the profile of your DS (or my DD) would probably NEVER have been picked up

This was me 15 years ago, school "didn't see" any problems, dd masked, friends and family, even her father had me down as over protective, you know how it is.
I beat myself up for a long time afterwards, why didn't I insist on assessment sooner, why didn't I move schools, why didn't I etc. but the truth is, at that time you don't know how to effectively make changes., You cannot change the past, have your moment of guilt then learn from your past, learn when to step up and say, no this is not acceptable and fight for support, especially for the transition to secondary school.

My only tips are to believe in your son and yourself as his advocate then don't take no for an answer. Rage in private, be polite and calm outwardly when dealing with people who most of the time should really know better smile

oxen1 Wed 18-Jul-18 19:57:52

Thanks again BlankTimes! I look at him and think how amazingly he has coped, he’s a happy and positive boy, likes to help people, adores his friends and teachers - I feel so much more empowered now that I know we can help him more, and I’m really proud of him. It does feel like a new day smile

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oxen1 Mon 30-Jul-18 13:58:31

I just thought I’d post an update. The day we were given the diagnosis was one of the hardest in my life, but since then I can honestly say things have taken a turn for the best.

The advice you have given me has been so, so helpful. The video that I watched with the mum and the son made me smile - that could be my own boy there, with his tangents and his love for furry stuffed toys and the fears and anxiety and the loveliness! I now understand him so much more, I’m more patient and I can foresee the things that may upset him.

We spoke to him about ASD, and he was sad and cried a bit but we reassured him that there’s nothing wrong really, just that he’ll be able to get the help he needs at school and that there’s a good explanation about why he gets stressed and upset sometimes. He’s already told some of his friends, and we’re always here to talk to him and hold him.

I know it’s early days, and some things are bound to not be as easy, but I genuinely feel like a weight had lifted and I want to say a great big thank you to all who posted and to Mumsnet for being there for us.

Love to you all xxx

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openupmyeagereyes Mon 30-Jul-18 14:27:35

Such a lovely update oxen, I’m glad things are so much better for you.

oxen1 Mon 30-Jul-18 15:14:38

Thank you openupmyeagereyes smile

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