But does he know……

Lost in thought NY

I’ve been asked quite a few times –  twice just this past week, if I have ever told DC that he has autism and if so how did I approach the subject. Most of the questions came from mothers with children that are just beginning to or do already realize that they are different from their classmates and friends.

To be perfectly honest, I really do not think that DC is aware that he is different – I do not know if this is a good thing – at the moment I am going with – yes, but I really do not think he sees any differences between himself and other ‘men’ his age, or anyone for that matter. I really do not believe age is a factor in anything he thinks about or notices. I don’t think age means anything to him at all.

That being said, it is never perfectly clear just what he might understand and what he does not. I really do not know what goes on in his head at times. I Know that just because he doesn’t seem to notice or understand, does not always mean that he doesn’t. Going on the small chance that he may actually know that he is different… yes, I have told him. I have told him many times, since he was very young.

We don’t have “sit down and talk about it” sessions because he becomes overwhelmed with too much information. He needs examples, he needs to see something. We also can not  talk about it too often – when we talk about anything too often, it makes him anxious – he thinks something is wrong.  I never want to give him the impression that anything is ‘wrong’ with him. He doesn’t need that.

I have to take the opportunities when they come. Because he is very visual, I try to approach the subject when we are watching TV or reading something that happens to have a character with Autism. The first time I brought it up to him, we were watching TV.

I remember starting out by pointing out the character.

“DC, do you see that boy?”


“He has autism. Do you know that you have autism too”

“yes” (he answers “yes” to just about everything)

“Do you see the way he flaps his arms? Who else does that?”

“You” (pronoun confusion – ‘you’ instead of ‘me’)

“Autism means you and the boy may think about things a little bit differently than Mom and some of your friends. Can you say ‘Autism’?”

“Autism” (usually I can type his pronunciations, but I can not type his pronunciation of the word Autism)

We’ve gone through this scenario many times – arms flapping – loud noises – whatever happens to be going on with a character or story.

We talk about it when we participate in an Autism Walk or fundraiser. We talk about which of his friends have autism. I can not get into too much into detail with him, I just point things out as they come up – a character, a fundraiser, his friends….

I point it out to him when he is watching his sign language sing-a-long DVD’s. I explain to him that his autism made it harder for him to speak at first (he was non-verbal until he was 7), this is why he went to speech therapy with Liza for so many years.

He was always very happy to see Liza every week. He worked hard.

(He LOVES Liza)

Before he learned to speak, he used sign-language.

He was always happy to see Sandi for sign. He worked hard with her as well.

(He LOVES Sandi)

Speech therapy and sign language were “good” things in his mind – fun time. This can be directly attributed to the insight and resourcefulness of both Liza and Sandi and the way they choose to make the process fun by working from his interests and incorporating them into his sessions. I am 100% sure that Liza can recite the “Wizard of Oz”, in every variation to this day. They made him happy.

We’ve discussed* it many, many times over the years and in many different ways, but for a boy who remembers everything, he can not give me the word “Autism” at any other time.  Unless I ask him to repeat it for me, he does not seem to even remember ever hearing the word. This just strengthens my belief that he really does not understand any of it. He does not know that he’s different and for now, that is fine with me. My goal here is not to make him feel that he is different.

So why do I continue to talk about it?

On the chance that he does recognize this now or later on, I don’t want him to wonder and not be able to communicate the question to me. This isn’t the sort of question he would ever be able to communicate.

And though I am relatively sure he does not understand, it is possible one day he may understand, or partially understand, but over and above all of that, if he were to hear “Autism” or “Autistic” elsewhere I want to be sure he doesn’t think it something that is “bad” or “wrong with him”.

I don’t and will not harp on it – I don’t feel the need to have those long heart – to – heart flowery discussions about it. He is happy, he knows he is loved. I will continue to mention it from time to time when the occasion arises, just so the word is recognizable to him and just in case he should ever wonder. If there comes a time when it seems that he might need to know more then I will try to explain it a little more in-depth or try to come up with a different way to explain it to him. For now, he seems to be just fine knowing what he knows and that is really all I want.

I wish I had a better answer for the people who asked…

Have I told him?  – Yes.

But does he ‘know’?

I may never know for sure….

22 thoughts on “But does he know……

  1. Continuing to discuss it with him recognizes and honors that his mind keeps growing and developing from getting older as well as through simple experience. It is one of the many reasons I respect you and your wisdom.


  2. Love this so much. Mine is so much younger, but I do talk about it from time to time. It’s like I constantly test the water now – hoping that one day the light bulb goes off or the chorus of angels sing. 🙂 But we continue to press on, don’t we?


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  4. Reblogged this on Lessons from my daughter and commented:
    I discovered this blog recently and just love everything I’ve read so far!

    I’ve had conversations with Emily about her Cri du Chat Syndrome diagnosis and over the years, it felt like I was just talking out loud but I now know that she was listening. I was always afraid that one day she would blame me for not telling her she was different….

    There are no right or wrong way, there is just the way we feel comfortable with and we all do our best with the cards we were dealt.

    Life is interesting like that!

    Liked by 1 person

  5. We have a son with Autism, now 13. He’s noted his differences for many years now. We talked to him about it years ago, and continue to do so. It’s tough, trying to explain what it all means to him. But we never wanted to shield him, coddle him, or overly protect him. Conversely though, we want him to accept who he is and go forth with confidence, make friends, and put himself out there. It’s quite the journey, isn’t it? 😃

    Liked by 1 person

      • Our son is fairly high functioning, and is able to converse with us, albeit not in what would be considered normal. I know he doesn’t fully understand what Autism is, but we’ve modified the way we describe it. The social awkwardness is what worries me for his future. Not everybody is patient, tolerant, or compassionate to his issues. He’s worked hard, as we all have as a family, and has made remarkable progress. But much work to do. He’s my inspiration.

        Liked by 1 person

  6. Thank You for sharing this Emily’s Mom! I always learn so
    Very much and appreciate all the coaching you live with on a daily basis. To DC’d parent . Thank you for showing me what life is like for some parents . As a life long coach of one thing or another I learn tremendously from reading you all.

    Liked by 1 person

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