Parents: When did you tell your child about their diagnosis?

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I would appreciate hearing from any parents whose child or children were diagnosed with autism. What age were they when you told them they were autistic? Why did you choose that age? In retrospect, would you have waited or told them sooner?

I'm autistic but diagnosed at 48. I have a ten year old who was just diagnosed. We have not said anything at this point since we just found out and there is a lot to process. We haven't told his teachers or school.

He's in a mainstream classroom and overall he's doing well. It's a new school and he's been bullied by more than one child but we're very proactive in notifying the teacher anytime something has happened. The bullying has been telling him he can't swing and today taking a necklace that he made off his neck and breaking it.

I also know nothing about how the plan a school devises works.

Any info will be much appreciated. Thank you.

I told each of my children when they reached their respective 8th birthday. I planned it that way ever since they were 2 years old. So, it's something that I have carefully considered and planned, way ahead of time. I wrote a letter to each of them. Below is the letter I wrote for my son. Every year afterward, on their birthdays, I would re-read my letters to them. It's a family ritual, and we've been doing it for a number of years, now. I believe 8th birthday is the right time to start to talk to children about autism. (I read my letter to my son on a train, on his 8th birthday, to make it a memorable experience.)

http://www.eikonabridge.com/Ivan_8th_birthday.pdf


Do you expect your son to read your posting here on WrongPlanet? Or do you want him to find out by accident what you have written behind his back?

See, from the days my children were born, I treat them as equal-rights fellow human beings. Everything I write, is for them to read.


I understand not everyone carries the same intellectual weight as I carry. To me it's no big deal, as I know I am the one person in the whole world that understands the most about autism. So, I send my writings and conference talks to the teachers, and they learn something. And the teachers respect me. They collaborate with me. But that is my case. I don't need to look up to anyone else in the world. I am my authority. There is no one else above me intellectually, when it comes to autism. As for other parents, it's truly up to each parent. I mean, I see with my own eyes how parents collude with psychologists so that their children don't get diagnosed with autism. But, some of those children do cause headaches to classroom teachers, while my children are always happy and smiling, and are darlings to their teachers. Even if you hide it from teachers, trust me, they know. It all just becomes a wink-wink-nudge-nudge situation: nobody talks about it, but everyone knows what's going on. Some parents think that's a better way for their children. Well, they may have a point, since bullying is a big issue. However, look at the case of my daughter. She has no problem going public with her autism. She is quite an advocate for neurodiversity. In fact, she can't stop talking about autism every chance she's got.



This last week my (11-year-old) daughter gave a classroom speech on LGBTQ rights and equality. I mean, most other children probably had no idea what she was talking about. In some topics, my daughter is just so much more mature than neurotypical children. And I am proud of her.

Again, myself and my children are exceptional cases. Each parent will have to choose their own best path. As I've said, the world out there could be rough. Autistic children get teased and bullied all the time. So I respect other parents if they choose to hide things. (It does come with some risk, but you have to balance the good and the bad.) As for my own children, I've told them that their mission in life is not to fit in, but to stand out. So they've got skills that other children don't have. That kind of puts them in a position of strength.

If my daughter gets diagnosed, I'll tell her immediately. She's almost 8. I will buy her the All cats have Asperger's Syndrome book... because ever since I saw this book, I thought about how perfectly it fits my older daughter. She identifies as a cat and she is very cat-like in her personality.

But there is another reason: we do talk about AS in our family. I am believed to have it. My nephew is diagnosed. My husband has obvious traits. I see a lot of traits in my maternal uncle, my brother pointed out traits of our paternal grandmother. We see it running in the family.
The description I gave to the children was:

"It's a special kind of mind, paying more attention to details than to the whole and not always good in communication." Then I listed several family members with traits of AS, including myself. "It can cause trouble and make some things hard but other things may be easier." Again, examples.

I think I told my daughter that "possibly, your mind can also be like that". So, it wouldn't be a revelation if she heard about the diagnosis, as I share with her my presumptions.

My son was tentatively diagnosed by the school at age 7 and was kept up to date during the entire process. He knew and signed onto why we were doing it, he knew and felt good about the result.

Thank you for the replies. They were helpful. Update: It made no sense in my mind to withhold the info from our son since it's nothing to be ashamed of. We told him in a loving and positive way and he's fine with the news as are his siblings. Thanks for the feedback!