Does your child with autism know about the diagnosis?
When did you tell him or her? As an adult on the spectrum, how did you find out that you have autism?
At my cafe book signing last fall, a young woman walked up to my table with her daughter. I don’t think she was in the café already. It was as if she just appeared. She had no purse and told me she was walking down the street to meet someone, so I can only assume she came into the café after seeing my sign in by the front door.
She immediately began talking to me about her ten-year-old son. She told me that he is in a special class for exceptionally gifted children. He has ADHD. Oh yes, he has autism also. She and her husband have not told him about the autism diagnosis, which I felt must be recent. They have told him and the school that all of his learning and social struggles are because of his ADHD.
She wanted my opinion on whether she should tell her son that he has autism!
Woah! Not my role. I’m a sharer of stories.
She seemed to need to talk to me about her son’s autism.
She wanted something from me. I listened and shared a story with her.
This is part of a story in my book that I shared. The son of the mother quoted is now a young adult.
We chose to tell him about the diagnosis. That’s always a dilemma in parents’ mind and I remember I thought, someday this is going to come up and it happens, sometimes, when we least expect it. I was pulling out of my driveway and [my son] looked over at me, and he was having a tough day. He just was pretty emotional and said, “Why is this so hard for me? Why is it so much easier for [my brother] to do x, y and z and this is so hard for me? What is going on?” That’s when I thought, oh my, this is when I’m going to have this conversation. I wasn’t prepared to do it, but that’s when I started to explain that certainly autism is not a bad thing, it’s a good thing. [These are] the strengths you have but that’s why some things…are very difficult.
After hearing this story, the young mom seemed to want to linger and talk more but she left to meet her friend, my business card in hand.
Later, I thought of other stories I’ve heard, stories that were intended for a chapter on self-awareness, stories that did not make it into the book. Here are two.
Story 1 – I don’t understand I have autism.
One mother of an adult son told me:
I don’t think he understands all the time that he has special needs. [One of the high school teachers] asked him about having autism and he came home and said. “Mom I don’t have autism. What did she mean?” Well we never brought it up because it never occurred to us, and we had to sit down and explain to him. But that was real slap in the face. Oh, what else haven’t I told him about things? He had a great opportunity to go to a…summer camp for kids with autism, and it’s kind of a chance for the grad students to study the kids and the kids to learn different things and have fun. That was in high school. But even so I don’t think it occurred to him that he actually had autism. I don’t know why he thought he was there, but he had fun. So, before he went to college, we had to explain to him what the situation was…but sometimes, we think he doesn’t even know he has autism. He just thinks he’s special, because he is. All my kids are special.
Story 2 – I Don’t Have Autism, You’re Wrong
And this story, by the mother of another young adult.
One thing I didn’t talk about which I think is hard. I don’t know how many other parents have this, but my son tells me he does not have a disability. So, this is another thing that’s made it really hard in transition. He says, “I know you all think I have Asperger’s, but I don’t have any disability.”
In other stories I heard, it was obvious that the child or young adult know they have autism. In other stories, it did not come up in the conversations.
What about your child on the spectrum? Does he or she know about their diagnosis of autism? How and when did they find out? If you have autism, how did you learn about it?
There is so much to learn from stories. Think of the young mother who felt compelled to talk with me even though she had somewhere else to go!
Others would love to hear your story. I would also.
You can share in the responses if your story is not too long or email it to me if you want to share your story anonymously.
firstname.lastname@example.org or click the button below.