Autism: When and how do I tell my child he has it?

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Hail_Linus

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My wonderful son just turned 9. He has high-functioning autism but he does not know it.

Should I tell him? Should I let him figure it out? Do I wait for a certain age? How do I tell him?

I am very stressed out about this. I need some advice. I would also love to hear real life stories about this.
 
I would tell him soon. At 9, he is 3rd or 4th grade. Kids are starting to figure out how to relate to each other. As a high functioning child, I would imagine your son wants to interact smoothly with the other kids - but may have challenges doing so. If he has challenges, it can be reassuring to him to understand why making and keeping friends might be more of challenge for him than the other kids. Then he would know it’s not his fault. Now, that’s not an excuse for anything, but an explanation. However, simply understanding what’s going on can be empowering even to kids.

Of course, you’d have to be sure that he didn’t use his new knowledge as an excuse to not have to do things that he still needs to do.
 
I’m surprised that at nine, he hasn’t asked. He has probably already figured out that he is different from his peers but just doesn’t know how to express that fact, or isn’t comfortable doing so yet. I think you should plan on telling him soon. I imagine there are organizations such as Austism Speaks that can guide you through that process in an age appropriate way. Good luck!
 
My cousin has Aspergers. She told me once that it felt like she had discovered a bomb in her brain when she found out, and she was not diagnosed until she was in her teens because other struggles masked it. It took her a while to realize that it was something that she could live with, it wasn’t like cancer (or a bomb). I’m sure the information was given kindly, but she was still in shock; maybe it would have helped if she had been told in a more casual manner? If authorities seem to take it very seriously, it might seem like a grave problem to a child. 🤷
 
I’m going to assume he’s in therapy, either privately or through the school. Has he asked why he goes? Does he know what autism is? I would use therapy as a segue and let him know that his brain works a little differently than others, and the therapy is teaching him the right things to do. You don’t have to put a name to it, but I would discuss how he’s a little bit different and stress how those differences are also strengths.
 
Just remember you don’t need to focus on the label but it is very helpful to a child to understand that they perceive the world differently than their peers. Have you talked to the School psychologist at your school? That person would be an important resource. Things like social stories help children with autism by presenting information visually. I would look into curriculum or programs like social stories, comic strip conversations and SuperFlex. These are good tools to use.
 
tell as as soon as possible. ideally, you should have already done it. my friend’s parents didn’t tell her she had a visual impairment until she was 12 (she could still see just not too well) and right before high school. as you can imagine, it did not go well. she has since lost all her sight but the fact that her parents did that still haunt that. just thik of it this way, in her mind, her parents were ashamed of it and didn’t think she was normal. that’s what it looked like to her since they essentially hid it for so long. i don’t want your son to go through that and think you did it intentionally to make sure other people didn’t know. i know, different situation but the outcome could be similar. as for how to tell him, be honest and lay out the facts, be positive and don’t make it seem like a negtive thing. i’ll be praying. god bless
 
I think it will be helpful for him to understand that his brain works differently than other kids’. I would tell him sooner rather than later.
 
My son has autism as well. He’s only 4, though, so we’re not at the stage you are at

Your son must be very high functioning for you to have been able to not tell him yet. As my son still doesn’t talk yet and has therapy daily, I imagine for us it will be one of those things like the fact that he is a boy – he’ll never recall not knowing about it. It’s such a part of our daily lives that we cannot really avoid referencing it.

I do agree with the general consensus that you ought to tell him. Waiting for him to figure it out on his own has too much potential to lead to resentment for not telling him. It is far preferable for you (and your spouse) to control the method and environment that he learns about this than for you to leave it to chance and then be cornered by surprise one day and not know what to say.

How you go about it is going to be important, though. As kids with autism vary so greatly, your best bet is to speak with any therapists that work with your son on a regular basis or an organization like Autism Speaks and get some feedback. You know your son the best, so you are really the best one to figure out how to use that feedback to formulate the best plan.

This is just my take, so it may not be the best approach for you, but I would do my best not to make it into some super serious big deal. His brain works a little differently than most people. That’s not necessarily a bad thing. But it comes with its own challenges that it’s best for him to be aware of so that he can learn how to handle the differing expectations of others.

I would also say it’s important for it all to come from a spirit of love for him as your son rather than a judgment on him being different from “normal” people. I’m sure that goes without saying. 🙂

I’ll say a prayer for you and your son. Please pray for me and mine, too.
 
Hail_Linus said:
My wonderful son just turned 9. He has high-functioning autism but he does not know it.

Should I tell him? Should I let him figure it out? Do I wait for a certain age? How do I tell him?

I am very stressed out about this. I need some advice. I would also love to hear real life stories about this.
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I wish that I knew that I had Aspergers at nine. I didn’t start to figure it out until I was 20 years old. Don’t leave him to figure it out. It could take him a lot of time and heartache for him to figure it out. It was is terrible not knowing why I was so different and why I treated differently (and sometimes terribly) by authority figures and peers. Prayers offered. 🙂
 
Zekariya said:
I wish that I knew that I had Aspergers at nine. I didn’t start to figure it out until I was 20 years old. Don’t leave him to figure it out. It could take him a lot of time and heartache for him to figure it out. It was is terrible not knowing why I was so different and why I treated differently (and sometimes terribly) by authority figures and peers. Prayers offered. 🙂
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This is very true. We found out about high functioning autism when my son was 16 and I was 39. We both have it. It explained so many things for both of us, especially about our social difficulties. He needs to know that he doesn’t just have a poor personality, that there is a reason when it seems that people don’t like him.
 
Joe_5859 said:
My son has autism as well. He’s only 4, though, so we’re not at the stage you are at

Your son must be very high functioning for you to have been able to not tell him yet.
As my son still doesn’t talk yet and has therapy daily, I imagine for us it will be one of those things like the fact that he is a boy – he’ll never recall not knowing about it. It’s such a part of our daily lives that we cannot really avoid referencing it.
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Hang in there. When my son was 4 he could basically only say nouns or he would repeat what ever was said to him.

The therapies really do work. However, I did come up with a few on my own that helped a lot.


  1. *]Find out what really interests him. At one time he was interested in Thomas the train so I spent a lot of money getting him new character figures every week. Then it became Disney Cars. I bought him a lot of those. He would get so excited that he would really try hard to pronounce there names. I remember one train was called Old Slow Coach. At first my son could only say O CoCo. We would practice until he got it.

    *]These kids often like video games. Leaving the kid alone with the video game is not a good idea. However, I discovered that if you play video games together, cheering each other on or maybe yelling “look out for the monster” he really got into it. Eventually he started cheering for me, helping me win, congratulating me, consoling me when I lost, etc.
 
Monicad said:
Bring it up soon in a gentle and beautiful way. Such as “God created you with brown hair, blue eyes and autism!” There is nothing to hide, it is a part of him. I have a child with Down syndrome and we talked about Down syndrome very matter-of-factly from a very early age. Autism is as much a part of your beautiful son as is his smile! It is part of him, help him to embrace it, help him to be proud of himself and be proud of the gifts that God has given him to share with the world. Hope this helps a little, God bless you and please be assured of my prayers.
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It is very true. I came to the realization a while back that, although I wish he didn’t have all of these challenges, the autism is a part of who he is and part of his personality. This kid who has autism is the one I love and the one I like to spend time with.

BTW, when my son was 4 years old we were very grateful to the kids with Down Syndrome. They were the only kids that accepted his hugs and didn’t get mad. Many of the so-called “typical kids” would often get violent with my son when he would try to hug them.
 
Hail_Linus said:
Hang in there. When my son was 4 he could basically only say nouns or he would repeat what ever was said to him.

The therapies really do work. However, I did come up with a few on my own that helped a lot.


  1. *]Find out what really interests him. At one time he was interested in Thomas the train so I spent a lot of money getting him new character figures every week. Then it became Disney Cars. I bought him a lot of those. He would get so excited that he would really try hard to pronounce there names. I remember one train was called Old Slow Coach. At first my son could only say O CoCo. We would practice until he got it.

    *]These kids often like video games. Leaving the kid alone with the video game is not a good idea. However, I discovered that if you play video games together, cheering each other on or maybe yelling “look out for the monster” he really got into it. Eventually he started cheering for me, helping me win, congratulating me, consoling me when I lost, etc.
Click to expand...

  1. Thanks. Yes, that’s about where he is at. Thanks for the tips. His big thing is letters. He loves the PBS show WordWorld and can recognize all his uppercase and lower case letters (and will frequently spell things on the ground). But verbally he pretty much only repeats things (in his own way) at this point. My wife learned the ABA approach and has been working with him everyday, which has made a noticable difference. It’s a slow process, though.
 
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