How should I discuss autism with my ASD son?

[carrieq]

He is 8, super high functioning, and very aware of the world around him. He recently saw something about autism on Sesame Street and asked my husband what it was. DH’s response was to ask him what he thought it was. He said he thinks it is when you don’t talk very much. At that point DH was not ready to talk to him about it and I was. Now we are both ready, but unsure of what to say. We want him to understand that it’s just how his brain is wired, that we are all wired differently, and it is why he struggles with certain things. We don’t want it to be a THING. We want him to know it’s an explanation, NOT an excuse. It is part of him, but not all of him.
I don’t think he realizes he has any differences. He is in a regular classroom with no aids. He gets speech therapy at school and is part of the gifted and talented program. He receives private OT once a week, but I don’t think he really knows why he goes there. He has a best friend and seems pretty typical. Does anyone have any suggestions or resources?

[Queen Mamadala]

I've explained to both my 11 and 8 year old that their brain is wired differently and they possess unique characteristics and traits that may present challenges in certain settings and environments, but nothing is wrong with them. I don't know if he truly gets it. He also has combined type ADHD. I've had multiple talks with my 11 year old. She just listens and nods. She gets it. Our talks became more frequent as she approached puberty and we definitely noticed changes the older she got. As she's gotten older we discuss how those challenges can manifest.

[sahara78]

I was actually thinking about asking this same question. DD is five, though, so our experience may not be too relevant.

We recently watched an Arthur episode with a character with ASD. He really acted nothing like DD, but I told her that she also has autism and that’s why it’s hard for her to talk to people sometimes. Not sure how much she took in, though.

[auntie]

DS's dev pedi likens the talk about an ASD dx to the talk about being adopted- it's something you want to do early enough that it's always been a part of their story but not defining and not something that requires a big reveal.

The other piece you will want to be careful about is that you are careful not to dwell too heavily on his academic prowess as a kind of compensation for having ASD as if it somehow balances the scales. It's great that he's doing well at 8, but some kids with ASD struggle as they hit the intermediate and secondary grades when problems with executive function, central coherence, abstract reasoning, and being able to apply Theory of Mind to literature become more critical than a strong rote memory. If a kid takes his self worth solely from academics and falters a bit, or sees the kids he thought were dumb hit their strides and out perform him at times his confidence in himself will be shaken.

I always told DS he was a Mac in a PC world. There are books out the explaining HFA/Aspergers to kids but I preferred to break it down into a series of smaller discussions. This book is the one most often suggested.

www.amazon.com/Autism-Explaining-Awareness-Functioning-Aspergers/dp/1935274910/ref=la_B004SJW9US_1_1?s=books&ie=UTF8&qid=1519509152&sr=1-1


Two other issues you need to consider-

1. Your comfort level with him sharing this information. At some point he will become his own advocate and will be attending his own IEP meetings so he will have to know, but are you comfortable if he shares with peers? DS became a pretty decent advocate and has shared his insights on ASD with classmates. Once it was when another kid on spectrum was terrorizing his fellow 6th graders- DS explain to classmates how he might be feeling when he lashed out. Another time a cute girl in marching band tried to sell DS a puzzle ribbon as part of an April Awareness fundraiser. DS didn't want to waste his last dollar on a ribbon- not a fan of the whole puzzle thing- so he politely declined. The girl tried to shame him into donating accusing him of not wanting to help people with autism so he told her he had autism and if she wanted to be nice to people with autism, she'd stop hounding him. In the end, he bought the ribbon and she bought him a soda and looked out for him the next 3 years they were in band together.

2. Once he owns it, he may find public perception frustrating at times. DS loathes the dire awareness campaigns each April. Some of the old Autism Speaks ones that paint ASD as the very worst nightmare upset him. It's also difficult when someone who his, or has been accused of having, ASD commits some terrible crime. The speculation over the likes of Adam Lanza, Nikolas Cruz, etc can be hard to live with.

[freezorburn]

This book has been recommended in one of my local groups. I haven't yet read it myself, but I have it bookmarked for when DS indicates some curiosity as to his particular situation.

The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents)