Question about "telling" my young daughter of her AS dx

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Hi,

I'm new here. My 7-year-old daughter was recently diagnosed with AS. I can't say it was a surprise -- I'd suspected something was up for years -- but it was still hard to learn the truth. She’s a happy, outgoing, friendly, loving, creative kid. She’s in second grade, and has been with most of the same kids for 3 years, so they’ve grown up with her. At school, she has 3 really good friends (one is in her class! Yay!), and she is friendly with loads of people. (She thinks she’s friends with anyone she’s ever had a conversation with, and will go and hug them every time she sees them). I do see how some kids look at her askance when she’s being all friendly (overly-friendly) with them. Sometimes people just won’t answer her or will move slightly away from her or even roll their eyes at their friend when she’s walked away. This has obviously been painful for me, but, amazingly, she has never noticed any of this. The only thing she noticed was the one time this year that she wasn’t invited to a big important birthday party (which she’d been invited to the year before, but had had several meltdowns at, and now wasn’t invited again! Also, the girl came up to her and told her specifically than she wasn’t invited. Thanks a lot!), and she cried, but it didn’t last long. (FWIW: She hasn’t been invited to any bday parties this year. She’s not interested in “girl” things, so I can see how she would really not fit in at a girl’s party where they’re painting pottery or curling their hair or something; and boys aren’t inviting girls to their parties anymore.)

Over the years, she’s had a number of assessments. She is grasping academic well, but it’s the social skills stuff that she struggles with, and why she has an IEP. She is also going to a social skills group and to OT, both of which she loves. We’ve always just said that these are to help her learn better, and she’s never asked anything about them further. She's not much for conversations (except about Minecraft or other fantasy worlds), and she seldom offers any insight into these classes, groups, etc., that we have her in, and I so wonder what's on her mind about it!

So I have some questions for *you* all. I’d especially like to hear from girls with AS and their parents.

Parents: When did you tell your daughter that she has AS? How did you do it? What was her response?

Aspergirls: How did it feel for you to be told? What did your parents say? Would you have liked it to be done differently? If so, how? Further, was there anything you did or any way you felt differently afterwards?

I really appreciate your insights.

Emb

I told my daughter right away why we were going for testing. I felt she had a right to understand what was going on, why problems happened around her.

A psychologist told me as an adult and I would have liked to know earlier as looking back it is embarrassing often people around me knew I was strange and I did not and do not see it, so not that I think anyone should think about themselves this way, I just think better to understand more clearly than feel completely lost what is going on.

I wrote a letter to my daughter and read it to her. Send me a private message and I will share the letter with you. She recently turned eight. I told her right after her birthday. I planned it out that way since when my daughter was 2 years old. I further informed school teachers about my telling my daughter.

I explained to her what autism means and what it means to be autistic. I also gave her instructions on (a) no need to hide, be open to talk about it and share her experience, but also (b) no need to take initiative to tell people that she is autistic. I don't view autism as a disease/disability/disorder/defect, I view autism as something to be proud of. So it was pretty easy for me to explain to her. She was happy throughout the whole process.

I read the letter to her twice, in two different days. Trust me, she understood everything. Eight-year-olds have pretty good grasp of all the subtleties in messages. She was happy and focused on correcting my grammar and spelling mistakes in the letter. We had a good time remembering her early childhood. But all that, does not mean she wasn't aware I was talking to her about something important and serious.

I have fun with my kids' school activities. Here is a video motivated from my daughter's "Junior Detective" class. And another one from my daughter's acting class in school, where she played "Sour Kangaroo." I know, it's probably hard for people to believe that my daughter is autistic, since she is so friendly, outgoing, and has so many friends. But trust me, you are either autistic or you are not, and all psychologists can definitely tell my daughter is autistic. Autism, to me, has nothing to do with underdevelopment (intellectual/verbal/social.) To me, autistic people are just a different species/sub-species of humans, and that's about it. They just need a different route of development. I highly recommend acting classes, by the way.

I was a late diagnosis, and knew before my parents did, but if I'd been diagnosed at 7, I'd have wanted to be told right away. However, it would be very important that it was not framed as something 'wrong' with me, but rather as something that made me different, and because I was different I needed different kinds of help.