Friday, March 7, 2008

To Parents With Autistic Children:

We've not said anything to Jack about autism, but I'm thinking we should. I kind of want him to grow up with that self-knowledge to be a given, rather than slapping him with it when he's older.

If you have an autistic child, when did you tell him or her? How did you tell him or her? What would you have done differently? If you haven't told him or her, why not?

I need some wise words from some people that are wiser than me.

Feel free to weigh in even if you don't have an autistic child. I value your opinion too.


  1. Well, as you might imagine, I haven't told Nik yet b/c he's not old enough to understand. That said, however, when the time comes I will make sure that the most important message he gets is taht he is unique and special and smart and talented; just like every other kid he has strengths and he also has things he might have difficulty with.

    Have you read any of the blogs on the Autism Hub? ( There are wonderful blogs by family members, autistic bloggers, and professionals. You may find some inspiration for the right time, the right words, etc. on some of the blogs there (um, except mine...I'm pretty much out of my depth onthis particular one!).

  2. I don't have an autistic child. but D is blind. At 3 he doesn't realize that everyone else can see. We openly talk about his blindness in front of him because we don't want it to be an issue for him. This may seem like a no-brainer but I know many who do not. Most importantly, when we introduce him to other little kids we say something like, "Can I tell you something really special about D? He can't see. His eyes don't work so he sees things with his hands and his heart."

    I think knowledge is power. Depending on Jack's level and areas of difficulty he may be relieved to know what the deal is. Just a thought...

  3. So, yeah, I clicked on your blog from DC Blogs and I've been reading EVERY SINGLE POST. On a Friday night. Yes, I'm apparently crazy but...I did find something you wrote that made me want to come back to where I started.

    "What I will say is that Jack is an amazing little dude with different strengths and weaknesses, but his brain works differently than most kids his age"

  4. Thank you, Niksmom and Imstell. I really appreciate your advice.

    And Anonymous, I'm honored that you're spending your night reading my words. Thank you for your comments. Did you come here via my pork chop post? What a wonderful way to gain notoriety! :)

  5. We haven't 'told' Boo per se, as he would not understand. I don't think he will ever understand.

    But we do say that he has Autism when he is around and he usually pipes up with 'and black hair too!' LMAO cause his hair is brown.....

    Good luck babe. I have friends with Aspie kids and they have told them, the ol' your brain works differently to other kids that is why you do X or whatever and the kids take it well. They are all Meh, yeah whatever. They understand but don't really care.

    AND go on to diagnose other kids!

  6. We haven't specifically addressed it with Moose (he's 4). With Bubba, we told him at 6 that he doesn't have a corpus callosum. We had a kids book with a brain and just showed him the piece that he doesn't have. He asked maybe one question. Both my boys know that there are things that are difficult for them and there are things that we celebrate. Moosie does his 'happy dance' and Bubba knows he does his happy dance because he is excited. Moosie knows Bubba gets frustrated about doing homework because it is difficult for him. In our family, we all have something going on (dad has ADHD and I have some pretty serious anxiety/ocd/social issues that make it difficult to function when I crash), so we talk more about things we have difficulty with and things we enjoy and/or excel at doing. I guess approach it like the sex talk: start small, and as the questions come, add more, as he matures more, deepen your answers. Let him be your guide.

  7. Obviously we don't have an autistic child, but both our boys do have a neurological disorder. The little one is just starting to show signs, but the (almost) five-year-old totally knows he's different than other kids. He doesn't need anyone to tell him. All we can do is help him know how special and wonderful he is and that even though he's different, he has his own strengths and abilities that are part of what makes him so special. I think that is what you're already doing with Jack. I imagine that Jack is going to know that he is different than a lot of the kids around him without anyone telling him that, but I think you can continue to reinforce how it's okay to be different and how wonderful he is in all of his own ways. I think you will continue to do the great job with him that you've done so far.

    ~ Dos Mamas (the biological half)

  8. The word "autism" and "autistic" is just part of life here. Just like talking about him as a boy, or having blonde hair, or liking blue. It is just part of who he is, and the term is treated that way. As he gets older, the meanings and implications of the term will also be part of his growing- just as the implications of being a boy, or having blonde hair, or liking blue will be. What does it mean to be a boy? What does it mean to be autistic? Those conversations will have to rise, and we face the translation into words as we do with any other fact of life discussion. Right now he is five; he gets the explanation he needs as a 5-year-old.

  9. Son knows - we told him. Each time we got another diagnosis (adhd, si, then ASD). We were just pretty black and white about it - you've got this, it's what causes these struggles and these strengths. It's not an excuse for you to misbehave and we still expect nothing but the best.
    There were a couple of books we read too. And, he knows other kids with it. We don't regret for a minute that we've been honest with him from day 1. He knew he saw the world differently and this helped him find his place in it.

  10. We haven't told him yet but we have always openly discussed things that are easy/hard for him vs. other kids, his "wild and crazy feelings" with regards to the medication he takes, etc.

    I know he's heard me use the words "autistic" and "Asperger's" ... for example if we're at the ped's office and they screw up and try to put us with a different doc than the two we usually see, I might need to remind them WHY it's so important that we stay with the familiar. So he's heard these words in reference to himself. But the actual talk? Not yet, but very soon I suspect. As soon as I get up the nerve :)

  11. Thank you all. Your stories are very helpful. I'll let you know how it goes. Although I expect it will be somewhat of a non-event.

  12. Having a conversation in the car is a great way to talk. Direct eye contact is not necessary (which often makes kids uncomfortable and actually adults too), keeps the topic less ‘heavy’. This is a great tactic for the ‘sex talks’ too.

    It’s not a one-time conversation, not everything you want to say needs to be said in one conversation. Bit by bit in ongoing conversations let kids absorb the content better.


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