The May 2013 issue of The Inner Net, a quarterly publication of the Family Support Network of Western North Carolina, includes nine people responding to the theme “A Diagnosis … Now What?” We were asked to describe issues that came up around sharing the diagnosis with a child, family, or the community. Here’s my little response, which is included in the issue:
My son Nicholas, now twelve years old, was “pre-diagnosed” with autism by school personnel right around when he turned three and formally diagnosed a year later, but my ex-wife and I knew intuitively that he had autism ever since he regressed and lost speech when he was one and a half years old. So, essentially, Nicholas has always had the diagnosis of autism. And I’ve always been completely open with him about it.
Certain years — from three to eight or so — were especially difficult ones for Nicholas. His frustrations around communication, his social deficits and consequent loneliness, his sensory integration issues, his anxiety, and his severe OCD fears and interests made life hard for him much of the time.
Each year, he understood a little bit better that he was different from other children, and he wanted to know why. He wanted friends. He couldn’t understand why he couldn’t do things other children did. He wanted to do them. His self-esteem suffered.
I think the concept of autism helped. “Autism is part of who you are,” I’d say, “and it makes some things easier for you — you’re so good at math, and you never get lost and can always tell me which way to turn — and it makes some things harder, like talking and not feeling okay unless everything is ‘just so.’”
Nicholas would “loop” on the idea of autism conceptually and ask why. That was hard: “It’s one of those things that just is,” I’d say, “like having dark hair or blue eyes, or being tall or short. Some people have autism, and some people don’t.”
I think knowing there were other children with autism and, especially, going to autism and special-needs camps, including Camp Royall run by the Autism Society of North Carolina and Camp Lakey Gap (Nicholas is the little boy in the top right on the Camp Lakey Gap homepage at http://www.christmount.org/camplakeygap/; he’s in a canoe with his counselor, Pat, a few years back), helped him a great deal and made him feel less lonely and better and more confident about himself.
One of the hardest moments was just a year or two back. We’ve always had a nighttime routine, rigidly adhered to each night even while the routine itself has changed over the years. Oftentimes it involves singing Nicholas songs. Recently, it has involved playing Bananagrams, too. And at that time, with me trying to build his communication skill set by practicing asking questions, I started to have Nicholas ask me three questions before he went to sleep.
The first couple of nights he had no idea what I was talking about. With his typical echolalia, he mimicked back questions I demonstrated for him as examples: “What’s your favorite type of ice cream?” and such. But the next night, he was ready.
When it came time to ask questions, he asked, “Poppa, do you have autism?”
In addition to being a question, it was a completely original thought from Nicholas, like nothing I’d suggested to him. It was such a profound question, advanced and intelligent but also almost an exclamation — of identity, of belonging, of longing — while he was on some level clearly trying to frame his autism’s meaning for himself.
And I had to tell him the truth: “No, I don’t have autism, Nicholas. But I’m so glad you do. You are wonderful, kind, and smart, you have taught me so much, and having autism is a part of who you are. I wouldn’t change a thing about you.”
Nicholas turns thirteen this year, and as he continues to wrestle with his sense of identity and what his autism means, I wonder if it’s something he would change about himself. I hope he embraces his identity, and I also know many adults with autism (like many adults without autism) struggle with questions of identity all their lives. Still, that’s the reality of his life, and it never even occurred to me not to be forthright with him about it, always, with one exception.
Nicholas expects to get his driver’s license one day. Each birthday is one year closer to that. He talks about it excitedly on every birthday and every half-birthday. But although I think Nicholas would be an excellent rote driver, I don’t think he’ll likely ever be able to get a license and drive, because he will be unable to anticipate what other drivers are doing and going to do — basic “theory of mind” deficits but ones that preclude driving on public roads.
I haven’t had the heart to tell him this yet — I don’t think he’d understand it yet, either — which gives me a little bit more empathy for those parents who are reluctant to share a diagnosis with their child.
There are many, many blessings in being a person with special needs and in being a parent of such a person. Some things are harder for some parents than for others. We simply must all try our best to make good choices at the right time with love and kindness for our children.
If you enjoyed this article, please, I ask you to share a link to it on your social media channels to spread the word. Please comment, as well.
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- Nicholas Thurman Jackson Hemachandra: the puzzle known as Superman
- The Autistic Spectacle
- Roads Not Taken: Lessons in Autism, Inclusion, and Life
Thank you very much for your interest and engagement. I truly appreciate it.