Tuesday, January 12, 2016

Telling Kids They're Autistic: I Want Your Stories

Hi, friendos! I will be speaking on a panel later this month aimed at parents who want advice on talking to their kids about their autism diagnoses. I have LOTS of things to say about this. My kids have known about their neurodivergence almost as long as I have. I think that it has helped them so much in terms of self esteem, self awareness, and self advocacy. I am hoping that in the future it will continue to provide them with these things as well as a community of people like them.

But much as I think my ideas are the best and only ideas in the world, I'm pretty sure they're not. I'm interested in hearing your stories so I can share some of them (anonymously).

I am particularly interested in hearing from autistic people about when they learned they were autistic, whether as a child or an adult and how it affected them. I would also love to hear from parents so I can share some of your stories as well.

I've given you some prompts below, because I'm helpful that way. If you would be so kind as to tell me what category you fall into and tell me a little bit of your story (short or long), I would be so grateful. You can leave a comment or email me at stimeyland@gmail.com.

The presentation is at the end of the month, but I'll be sure to write about some of your responses here as well after the event.

Your writing prompts:

Autistic people: How did you find out you were autistic? Who told you? How did they tell you? How did it change things? If you learned this later in life, how do you think it might have changed things when you were younger if you had known then? Do you have advice for parents who are thinking about this process?

Parents of autistic people: Have you told your child? Why or why not? If you have, what was their reaction? Do you think you made the right choice? Is there anything you would have done differently?

Autistic parents: Hi, fellow travelers! Let me know either or both of your experiences!

Also, you all are nice and extremely good looking and my favorites.


  1. My mom told me when I was in middle school, I think. She talked about it one day at home. It helped me know why certain things were in my life. For example, I knew why I was a hyperactive kid and had trouble with some things, went to special-ed classes until 3rd grade ( I actually had a mix of both that year) and had therapy. Once I knew I had Asperger's, I understood why I was how I was and did some of things I did. That's it in a nutshell.

  2. We're waiting until our son, who's just turned 7, asks questions about himself and his school, which is for bright kids with language-based learning differences. I feel like this will be the year--his level of self-awareness seems to be taking a real turn. My husband and I are both neurotypical, and the question of whether we've waited too long truly weighs on me. I'll be curious to read about other people's stories.

  3. Thank you so much! We found out in very different ways, but I think I felt the same way as you when I found out.

  4. Thanks for sharing your thoughts! I hope other people share their stories so you can hear them. :)

  5. I write about this when I did it! I'm not sure if that's what you're looking for but here it is. http://anthonyjoseph2005.blogspot.com/2015/04/autism.html?m=1

  6. My kids were diagnosed at 2 and 3. Talking about autism with them was about much more than a single 'this is your diagnosis' conversation. I guess I laid the groundwork throughout their younger years in the way we'd talk about neurodiversity, about the way bodies and brains work, it was just always there in the background and in the words I chose to use with them. Then when we got to the diagnosis conversation (I think they were about 7 and 9), it was really just about putting a word to concepts that were already very familiar to them.

    I think an important part of helping them to understand themselves has been talking about the way bodies work (all types of bodies)... why people behave and react and sense the way that they do, how does that work for most people, how does it work for them specifically... and all the many ways in which the world has been adapted (or not) to suit those ways of being. This is especially important from a self-advocacy standpoint.

    I was in my late thirties when I learned about being autistic, and that was about thirty years too late! I spent so many wasted years with a fundamental lack of understanding of the way my own body works, without the supports that could have helped me greatly, wondering why things that seemed so simple for everyone else were so hard for me. It was a confusing, frustrating time that took a huge toll on my self esteem. Identifying as autistic and understanding what that means for me changed everything. It changed my life.

  7. I can't believe how long ago this was, but I guess that was the official telling.

    Where are you panel-ing? I love watching you in action, lady. :)

  8. This is perfect. Thank you.

  9. Thank you so much for sharing this, Bec.

  10. Wow. 2009. Amazing. Thank you for directing me back to it. The panel is a local organization. Nothing big. :)

  11. this is my bible on the topic ..


    here are a couple of other thoughts ..



  12. Yep! The chavisory one is on my list to reread before my panel. And I'll go make sure I've read yours too! Thanks!

  13. Hi Jean, I'm late to the party (as usual, ha!) but we told my son not too long after his diagnosis. He was 4. He had already suspected something was up--we're in Canada, and the process was (may still be?) somewhat cumbersome (3 doctors must confirm the diagnosis, and it included 6 hours of psychological testing). It meant dad taking days off work, and lots of "playing fun games" with someone he'd never met, in a little room, at a little table.
    Anyway. Once we had gotten the final word, we sat him down, very casually, and told him that the doctor had "found out that his brain works in some really amazing ways" and that he might find some things difficult, but that mostly, he will find that he is a really incredible person, and that lots of people have brains like his, and that he is exactly the son we have always wanted. And he is. We essentially acted as though we had collectively won a prize. In the years since, I have been alternately glad and regretful that we told him when we did. I regularly point out the accomplishments of autistic individuals to him, from athletes to artists, although his autistic personhood is not a regular topic of conversation (nor is it taboo in the slightest).
    We told him when we did for a couple of reasons, partly because I did not want to risk his finding out from someone else in a way that could have wounded him; I really wanted his first life conversation about autism to be one of celebration and appreciation. (The conversations in the years since have been more complex, more nuanced and more difficult, of course.)

    As a side note, your blog was one of the first I read after my son's diagnosis, and it has brought me so much joy and comfort over the years, I can't even tell you.

  14. I cannot tell you how much I love this comment. Especially the part about his brain working in amazing ways and super especially the part about him being the son you always wanted. I am DEFINITELY going to suggest that to parents at my panel. Thank you!

    And thank you so much for your kind words. I appreciate them so much. :)


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