Most parents think of 'the talk' in relation to sex. That's not the talk I am referencing here. This talk is about whether or not you tell your child they have autism. When my daughter was diagnosed with autism at age 3, her ADOS score lied right in the range of classically autistic and PDD-NOS. Six years later she was making huge strides in her development: she was in a regular classroom setting without an aide, achieved A's and B's for grades she had a best friend she played with regularly, she enjoyed team activities and looked forward to summer camp at the park district with her age group. How exciting! However, I knew that with this would come "issues". Those issues would come to a head due to her speech delay- she has no problems speaking up and loves to ask questions. Sometimes these question aren't appropriate for the conversation with them being either off topic or worded atypically. I knew that other kids would take notice of this and tease her or exclude her from their groups.
By 9 years old, she was progressing to the point that I knew it was time she be given THE TALK. Not THE TALK that every other parent nervously awaits having to give, but rather THE TALK that would answer the questions of why she used to be in a smaller classroom than the other students, why she went to speech and occupational therapy during school and why she went to private therapy after school. She had never asked me why she did all of those things, but I knew that it was coming. I knew it would be coming because she was asking a lot of questions about other medical type issues. She once asked me if I have a heart defect. She asked if she had a heart defect. She learned about heart defects because of a fellow student that died due to her heart defect the year before. She then said to me that even if she or I did have a heart defect, it was ok because that’s the way we were born. The timing of this question and her response gave me an big opening to discuss her issues but I wasn’t confident of what I would say nor did I want her to equate her Autism leading to early death like her classmate-she’s very intelligent I only have one shot to get this right so I passed on the opportunity.
For several months I would occasionally think of what I would say. I did internet searches looking for what others may have said. There are plenty of guidelines by specialists, organizations and parents but nothing with specifics of what was said. This is a big step for a parent, one I don’t want to traumatize or further confuse so I was looking more than just a guideline- I found nothing. Maybe blogs offered more insight. Since I didn’t read anyone’s blog, those couldn’t help me either.
This following is everything I did:
I obtained a book from Marianjoy (where she has her private therapy sessions) which is called “I have Autism, A Child’s first Look at Autism”” by Pat Crissey. This might be a good place to start. I had read the book and felt it was very simply written, maybe too simple. For a while I had the book hidden as I wasn’t sure it was something I wanted to use. As I said, months would go by and I would occasionally think about what I wanted to say. I was afraid I wouldn’t get it right but was tired of putting THE TALK off. I wanted her to learn she had Autism from me, not another student and not any accidental way. So I stopped hiding the book and I simply placed in on a desk under a couple papers knowing she would find it. And she did.
She said “hey dad what is this book”? I told her it was a book I had from Marianjoy and asked her if she wanted to read it together. We read through it from cover to cover without stopping. I then went through it again with her and stopped at some specific pages:
Page 5, 6, 9, 10 and 13 all contained a topic that I showed her and knew she would recognize as having to deal with the same issue. I would say, “Does this sound like something you do and experience?” She agreed with the books topics on those pages.
After revisiting those 5 pages, I then went back to page 8, 10, 11, 12, 19 and finally 20. Those pages give positive spins on everything and I didn’t want her to feel like everything about Autism was negative.
Page 10 mentions that those with Autism can remember some things that everyone else forgets. She then added to the conversation by saying “that’s true, because one time in math class I solved a problem on the White board that no one else knew that answer to.” I was thrilled she became part of the discussion by her own choice and a true to life experience that she was sharing.
After we finished with the book she asked me if I had Autism. I told her no I do not but asked her if she would like to see photos of people that do have Autism on her iPad. She loved that.
I pulled up photos of Alexis Wineman, Daryl Hannah, Temple Grandin and Dan Aykroyd. I told her what each of them is known for besides having Autism. She was very interested in Wineman and Hannah.
I then also stretched the subject further and showed her photos of Albert Einstein, Thomas Jefferson, Mozart, Nikola Tesla and Bill Gates. I informed her about everything they did. I realize that none of this second group was truly diagnosed, but they are all widely speculated to be on the spectrum. Showing her these people I felt was the best way to once again inform her that not everything about Autism is on a negative slant. I then told her another fact- I told her that every single person on the planet has had their life affected in one way or another just by this second group of 5 Autistic people. She was very interested in Einstein and Mozart-
After my presentation was over, I asked her if she had any questions. She said no. I also asked her if she felt bad knowing she had Autism. Once again she said no. I told her that was good, because the progress she has made has been wonderful, that I was proud of her and that I loved her no matter what. Lots of hugs occurred at this time.
There was one part of THE TALK that I wasn’t expecting. When it was all over, she had a smile on her face.
I hope this blog page can help you with the decision on whether to tell your child about their Autism and also serve as a guide on how to personalize your talk. feel free to share this information to others that may learn from it.