When Did You Tell Your Son/daughter That They Were Diagnosed With Autism? | MyAutismTeam

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When Did You Tell Your Son/daughter That They Were Diagnosed With Autism?
A MyAutismTeam Member asked a question 💭

Hello everyone, Ive been wondering for some time now how and when to tell my 5.5 yr old son about his diagnosis. He has a twin sister and I know she wonders why he goes to so many "classes" as we call them, like speech and OT, etc. She also gets so frustrated sometimes when he doesn't respond to her or has a meltdown. Has anyone told their children when they were this young? Or did you wait? They are so young so maybe its not the time. Or maybe telling them would cause anxiety and actually be… read more

posted August 29, 2016
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A MyAutismTeam Member

I tried very hard not to use the word "different" when I told him. I basically explained it to him as fact. My son LOVES facts, so that helped a lot I think. Now, at age 7 he is fine with being different, he uses the word 'different" to describe himself often because he has embraced the fact that he is different and he's okay with it.

When I told him, I just explained it by saying that he was diagnosed as having autism. It means that some things that may bother him don't bother other people. Like big noises hurts his head but it doesn't bother some kids the same way. I told him it's why some kids enjoys certain smells or foods but he doesn't. I also told him that the teachers, doctors and mom and dad would do everything we could to make him more comfortable. It was okay to get upset but we needed to find GOOD ways to manage being upset and that is what we're all trying to help him do. I also told him that I know he wants good friends, and so we have to work just a little bit harder to understand our friends than other kids did - but it would be fine because by working a little harder, we'd make wonderful friends at school. I asked him how he felt when he struggled to understand why his peers got upset with him, and he said he felt bad but he still wanted to be their friends - and I told him that was great news because that is one of our biggest goals, was to help him understand his friends and vice versa. I noted that other kids aren't as wiggly as him, so that is why he uses a special chair, so he can feel grounded and not so wiggly when its time to sit still in class.

I put him on a pedestal, but not too high up. I told him he was special and unique in ways some people aren't and that while it can be difficult at times, it's what makes him important to me the most. And that I love every inch of him, no matter what.

It really helps that the school has made efforts to get children in his classes to better understand him as well. They set up in-school play dates with his peers, so he has one on one time with various students through out the week. Also, he if does something to offend another child, they will set aside 15 minutes that day to help both my son and the other child find some middle ground and a way to be friends, to better understand each other and how each other feels about the situation they just had.

posted September 2, 2016
A MyAutismTeam Member

I also want to add that if you can tell your children early enough, it will be easier for them to understand and embrace their diagnosis as a part of who they are. They will be more willing to work hard at being more socially acceptable. If a child is young enough not to be entirely bothered by being different yet, they can learn more easily to accept who they are. It gets harder, I believe, the older they are... because it's "NEW" to them and it comes at a time where being different seems bad If you aren't wearing the right clothes, having the right haircut, listening to the right music you're an outcast... adding a diagnosis like autism on top of those stressors seems more difficult to cope with.

But if they've learned their are different young and it's OKAY to be different... I believe life is easier for them.

posted August 31, 2016
A MyAutismTeam Member

I found, personally, that I wanted my child to be very involved with his life and condition. He has known of his diagnosis since the day it was official. (he was 5). This has given him a wonderful opportunity to educate others on his behavior. He is able to express that he has autism, and does so freely whenever he is comfortable in doing so.

He doesn't get sarcasm well, and I recall a day about a year ago when an older child (teenager) was being very nasty to him... because my son can get annoying to others... he's very hyper-focused on subjects of interest and can talk to you for hours about it without even realizing it bothers you. One day he was on a subject, going on endlessly, I was trying to get him to quit when a teenager, quite rudely asked him, "What are you? Autistic??" Because the word autism has become the new "retard" from the past... a way to put down people for being odd... I was about to fly off the rail, and my dear child had no idea this kid was being mean and responded, quite happily, "Actually, I am! How did you know? I have the kind of autism where you can talk! My cousin can't talk though!" and rambled on about that, the teenager was quite stunned about it.

In the end, I felt it was better he knew and understood why he was different and that he can improve through therapy... rather than coming to realize it later in life because someone said it to him or he started seeing the differences between himself and others. Or wondering why he always had to attend special sessions with teachers the other students didn't... why he had a paraprofessional and no one else did... why he had to use special tools (like weighted vests, blankets and special chairs) and no one else did...

I grew up always in pain because I never understood why people treated me differently, why I had no friends and why I couldn't understand other people. I faked it to make it my entire life... always feeling like an outsider and always thinking there was something wrong with me because I had to PRETEND to be like everyone else.... I didn't want my child to feel this way.

posted August 31, 2016
A MyAutismTeam Member

@A MyAutismTeam Member that is beautiful, thank you :)

posted September 2, 2016
A MyAutismTeam Member

We still haven't had that talk yet. Our 6 year-old ASD daughter can't tell she's different and never appears to want friends. Her little brother still hasn't figured it out yet and usually just thinks she's naughty so that's the reason we never go into a restaurant and sit down.

posted August 31, 2016

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