“Am I going to die?” Explaining Autism to Children

Within our local community of families with Autism, a recurring question and ongoing discussion is the appropriateness of explaining an Autism diagnosis to your spectrum child. There are many dimensions to this question some of which may be unique to each family. There is a reason Autism is considered a spectrum disorder: Autism symptoms vary widely among those on the spectrum.

The wide variance of symptoms and the unique family experiences that may result, necessitates that each family consider what is best for them and their special spectrum child. We did and I’m going to share with you our experience assisting our little guy with learning, accepting, and embracing his life on the spectrum. Importantly, we’ve begun this effort within the last week and, so far, are pleased with the results.

Since our son’s diagnosis of Autism Spectrum Disorder – Asperger’s Syndrome, about two-years ago, we have struggled with why, how, and when to tell him. Fortunately, his diagnosis was received when he was quite young, giving us time to consider – we thought. It did not take long before he started asking why he was going to special doctors and therapists while his sister was not. He wanted to know what was wrong. He asked, “Am I going to die?”

We assured him that he was healthy and possessed no life-threatening malady. Instead, we explained, as a family we were going to therapy to help us be a better family. This explanation lasted through our eight weeks in parent child interactive therapy. Then, we started occupational therapy and our son noticed that only he participated in the therapy. He is very inquisitive, as is common among Aspies, and wanted to know why only he was working with an occupational therapist.

The occupational therapy our son experienced was intended to assist catching up with his peer age group. Our son was developmentally behind in his fine and gross motor skills. He did not begin walking until thirteen months and I have mentioned in previous posts his challenge learning to speak. The occupational therapy lasted for six-months and, we could have gone longer had our insurance not capped such visits at twenty-five per year. In addition, we were anxious to begin social skills group therapy in anticipation of his beginning full-day school, later that year.

Sometimes you have prioritize and in the US, with a private market based healthcare system, unfortunately we do this often. We tried to compensate giving up occupational therapy by having him participate in a soccer (football) league. Helped some but not as much or as rapidly. Though, he did manage to score a goal his last game of the most recent season. (Papa bear needs to extol the soccer exploits of his son a bit).

Under-8 soccer in this league is bunch ball. The kids from each team chase the ball around the pitch as a bunch, kicking at the ball – this is important, they don’t often connect with the ball – until some little tike eventually makes contact with the ball sending it careening at odd and unanticipated angles around the field.

In his last match, five-minutes into the first half, about twelve yards (meters) in front and to one side of the goal, the bunch was furiously trying to kick the ball. The ball squirted out as if someone had actually intended to make a perfect centering pass. My son gave chase, caught up to the ball, then – and this is the amazing part – squared his hips to align with the goal and connected perfectly sending a solidly hit low shot past the goalie before the poor kid could react. GOAL! In that one moment on the soccer pitch, our Aspie had put together all of his fine and gross motor skills in a perfect sequence of soccer skill to notch a goal. Wow! I’m still buzzing about that accomplishment.

Right.  Back to the topic at hand…where was I…Oh!

Was about to describe how…the constant change in therapy routines was a challenge for our Aspie. May have mentioned that people on the Autism Spectrum do not do well with unexpected change. Our Aspie was getting overwhelmed. Just as he settled into a routine of one type of therapy, we changed to a different type. He dealt with the change as best he could. Fortunately, we were able to go to the same location for all therapies and I think this helped him cope to the extent that no meltdowns were experienced. We celebrated that fact!

Once social skills group therapy began, our Aspie was naturally curious to understand why he was participating. How do you explain to a six-year old that they lack social skills? That the social skills group therapy is intended to assist their social skill development? We settled on the notion that the social skills group would help him make friends. This was anxiety inducing on the part of the parents, he had long wanted to make friends and had experienced difficulty doing so and we longed for him to make a friend. We still had not explained his diagnosis only the shallow purpose for therapy. We were waiting for more maturity, we were not confident he could comprehend his diagnosis. We should have had more faith in our son.

Our little Aspie has now been in social skills group therapy for over a year. During that time he has concluded that his participation is warranted to help him be better behaved. He connected social skills group therapy not with learning how to make friends but, with being better behaved. At the core of this connection is a negative assumption of, “I am bad or I misbehave.” I was not going to stand for this assumption, this negativity, taking root in my son’s sense of self-worth.

My childhood, adolescent, and adult experience as an undiagnosed Aspie had left an indelible impression upon my sense of self-worth, and it was not good. Needless to say, I am determined that my son leave my tutelage with a vastly different and far more positive sense of self-worth. As a student and lover of political philosophy, the injunction, “Know Thyself,” factors prominently in my ontology. This inscription on the ancient Greek Temple of Apollo at Delphi, has no agreed upon interpretive meaning.

Regardless, I take it to mean that to know oneself is to have some sense as to one’s potentialities, talents, strengths, limits, and weaknesses. Asperger’s Syndrome is both strength and weakness. My son, in order to take full advantage of the strengths Asperger’s affords him and dull the effects of its weaknesses, needed to begin the process of knowing himself in order to cast aside the pernicious assumption of, “I am bad.” His self-worth was at stake.

To this end, I went back to amazon and searched for children’s books on Autism. I know everyone raves about All Cats Have Asperger Syndrome by Kathy Hoopman. Just one problem, I’m allergic to cats.  I went a different direction. Ultimately settled on three books, two written by a child of the same age about their experience with Autism / Asperger’s, What It Is to Be Me!: An Asperger Kid Book by Angela Wine and Ethan’s Story: My Life With Autism by Ethan Rice. The third, I See Things Differently: A First Look at Autism (A First Look At…Series), by Pat Thomas, was written for the purpose of assisting other children, not on the spectrum, to learn more about their classmates, siblings, or friends, who are on the spectrum. I wanted this book especially for our sweet pea, our son’s sibling.

We received the books a few days ago. The day we received them, I read all three to both kids. They paid attention, asked questions, and I took opportunity, during the reading, to note in the book common experiences with my son. I wanted to give him a soft nudge to begin relating to the main characters in the books. My intention was to leverage these books to help my son begin to understand the marvel that he is as a person with Asperger’s.

After finishing the books, I asked my son if he understood why he attends social skills group. He responded, “To make me better.” I was saddened. In part, yes, to make him better at being social. But, I feared he also meant to help him behave better. I said to him, “Don’t you ever think you are bad or, a bad person. You are a very good person, my special boy.” I let that sink in a bit. He moved his hand over to mine and took hold of it, I could see some tears welling in his eyes. He said, “Thanks, daddy.” I knew at that moment what I had long suspected, he had been grappling with having a positive sense of self-worth, owing to his lack of understanding concerning the purpose for his participation in socials skills group therapy.

I then explained to him that, like the characters in the books we just read, he has Autism, is an Aspie. That like the characters in these books he has special abilities because of his Autism that others do not possess. That his Autism / Asperger’s makes him really good at math, love learning (obsess) about the weather, and cover his ears when he hears thunder or other unexpected loud noises. I observed he was thinking deeply about what I said to him. I reminded him that I am also on the spectrum, like him an Aspie.

Over the past few days, I have notice my son returning to these books and reading by himself. Last night, after putting he and his sister to bed, I checked on him, noticed that he was still awake. I went in and laid down next to him, he snuggled up. He’s always been a snuggler. (I’ll miss these days as he gets older). I inquired as to his understanding of Asperger’s and Autism and whether or not the books were helping. He said they were and he understands a bit more.

He asked if his sibling has Autism. I said she does not. He asked why. I replied, since we are people of faith (it works for us; please do what works for you, I wholeheartedly support your right and privilege to do so), that’s how God made her and God made you with Autism. He thought for a bit, then asked, “And you too, daddy?” I responded, “And me too.” I then got up, turned around to give him one last kiss goodnight on the forehead, and told him, “I’m glad we can be Asperger’s together.” I extended my hand with my pinky finger out. He did the same. As our pinky fingers interlocked, he said, “I am too dada.” A Vulcan mind meld, a solemn pact, a tender moment I shall never forget.

In our family, the diagnosis of one parent being on the spectrum has, perhaps, made it a bit easier to explain Autism to our little Aspie. He knows that he is not alone in this journey through the odd life on the spectrum. In some ways, the Asperger’s diagnosis has brought my son and I closer, made it easier for me to explain to my wife what he is experiencing, since, I experienced it first, and made me a better parent. My wife understands me better and our communication and mutual understanding has improved.

I am so happy that the books I purchased on Amazon are serving as the catalyst for helping my son connect positivity with being an Aspie. I could not ask for more. Except, maybe, more blog followers?

How did you explain your child’s autism diagnosis to them? Look forward to your comments.

8 thoughts on ““Am I going to die?” Explaining Autism to Children

  1. I can’t go into detail because I am only related to someone with Aspergers and it is not my place to discuss them on the internet. I wanted to say, though, that it’s good your son has an early diagnosis and he benefits from you understanding what it means to be an Aspie. I also agree that books written by and for specific ages are very useful. Self-worth is an issue as is making friends, even harder in teenage years. I like what you’re doing here and recognise a lot of what I wish we had known sooner.

    Liked by 2 people

    1. Understand needing to protect privacy. Fully support.

      Thank you for commenting and lending your support. The community of families and individuals on the Spectrum is a welcome addition to our support network.

      Yes, an early diagnosis can make all the difference. Regardless, a diagnosis at any stage of life can be positive.

      It’s interesting in our family, we have both an early and late diagnosis allowing us to observe the different effects and contrasts of life on the Spectrum.

      Making friends has always bedeviled me and, I can confirm your insight, very difficult during teenage years. What gives me hope, is that there is far more awareness of Asperger’s / ASD than when I was in elementary, secondary, and college institutions. And with that awareness comes more acceptance and understanding. I have hope for my son and daughter.

      Liked by 1 person

  2. Speaking of books, a good book to know about as children enter their teens is one based on a true story, with alternate chapters contributed by two teen twins — one on the spectrum and the other considered normal. Below are bib details:

    Author Peete, Holly Robinson, 1964-. Same but different : teen life on the autism express / Holly Robinson Peete, Ryan Elizabeth Peete, RJ Peete. — New York : Scholastic Press, 2016.

    Liked by 1 person

  3. Thanks for this – we’re having the ongoing debate about what to tell our child – he’s had two different evals with two different dx’s, one being autism. Reading is his Thing, so I’m thinking that maybe this approach would help him. Thank you.

    Liked by 2 people

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