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.
debbie@conversationsaboutautism.com or click the button below.
Conversations About Autism 
Reblogged this on Retirement – My New Reality.
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My son Arti (14 y.o.) was diagnosed last summer. It was hard, but we told him. Why do that at such a fragile age? Because the whole point of the diagnosis was to get him some therapy and some skills training–which we are doing through Mobile Therapy. I don’t know if he agrees with the diagnosis, he’s never verbally acknowledged it, he simply ignores us when we talk about it, and when we point out something he did or didn’t do that is probably directly related to the autism, he gets really pissed at us, screams oh my god, and storms off. Still, I’m glad he knows we think he has autism, and I think he spends more time thinking about it than he lets on. At times he seems like he’s trying to make progress.
Really, I think that each kid has a window. If you catch it early enough it can be part of the discussion without the initial stigma. Learn late enough and he’ll have the maturity to introspectively handle it. For Arti, 13-14 definitely wasn’t an optimum time to learn, but we really hoped to avoid a Story #2 scenario, and he already feels the effects of the disorder anyway.
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We do the best we can as parents whether our kids are a teen like your son or in their thirties like mine. Knowing that you believe your son has autism allows him to understand that you do not think he is bad or stupid or has other negative traits. He might have even applied negative labels to himself and can now reevaluate those. One woman told me she got her diagnosis as an adult, when her own child was diagnosed. She was elated because she said, “I would rather be autistic than stupid any day.” She carried her parents perception that she was stupid until the time of her diagnosis!
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Also, I think your category and tags might be too narrow to reach a wide audience. You might check in with Robyn or the bereaved single dad to see what tags they use. A couple that fit well in my mind are “Writing” and “Parenting”.
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Thanks for the thoughts. I struggle with categories and tags. I think of categories as broad like what you mentioned, and tags as more specific like what I included. Then I forget to add the categories at all. I will do some more research. I have also been trying to figure out Instagram and following some bloggers there. The extensive number of hashtags on those posts has muddied the “tag water” for me, I think.
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We haven’t really had “the talk” yet with Declan. We have with Catelyn, of course, she was in the room when the clinician discussed her diagnosis and I think it helped her understand herself better, but she doesn’t use the diagnosis to define her. She doesn’t say, “I’m autistic.” She says, “I understand why I have big emotional reactions, or have difficulty socializing, or have so many sensory issues.” But with Declan, I haven’t been sure he would be able to have those understandings or draw those conclusions. He has heard us use the term autistic in reference to him and we told him that means his brain is really special. Like when he started learning and reciting all the US Presidents, his teacher pointed out to him that his brain was special and being able to learn and recite all that he could was something that she, and not many others, are able to do. We have just gone with that explanation as well for now. He hasn’t asked why he has to go to speech therapy or occupational therapy or social skills training in school when his peers don’t have to. He hasn’t asked why he rides the little yellow school bus instead of the bus the other kids on the street ride. He hasn’t asked why he has a 1/1 aide. I don’t think he realizes the differences yet. When he does and when he asks I’ll have to elaborate more on “your brain is very special.” But I think I want him to come to me with it because I fear if I go to him with it he will be upset that I am telling him he is the same as his peers, but different. “Different” being the trigger word for him.
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Even if there were a class called Autism Parenting 101, there could not be a set curriculum. Two children, two experiences. I think of the time my daughter asked me something about babies and I spent an hour struggling through the birds and the bees talk when all she wanted to know was some simple thing which I can’t even remember. It was not the right time for all the information I gave her! Declan is not ready for all that yet.
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Sorry, the teacher told him that his memory was something that she and others are NOT able to do.
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We were open from the start. Any meetings had to involve him. The professionals had to speak to him and not us. In sons case it’s worked out ok for him.
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I have seen that approach work very successfully with a young man I know here. He even conducts his own yearly IEP’s, the Indivdual education plan, in the states. I was invited to attend his transition IEP during his senior year of high school and was amazed by what I saw. It’s great for the kids who can handle that like your son. Thanks for sharing.
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