Helping a child with autism understand a parent’s serious illness

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Stan and Judy Jaskiewicz with their daughter Jennifer Yeakel, wearing her graduation gown from Temple University's School of Social Work, and son Peter, in his graduation gown from North Penn High School, in the backyard of their Lansdale home on Sunday, June 12, 2016.

All parents wonder when to have “the talk” with their child.

But for parents of a child with a disability, “the talk” has an entirely different meaning: explaining the child’s diagnosis to him or her.

How much to say, and how to say it,  depends on the child’s unique abilities. It can be just as uncomfortable as talking about the birds and the bees.

But what if you have to explain a parent’s  diagnosis to a child?

That was the dilemma my family faced last year, after my wife’s diagnosis with late-stage metastasized melanoma.

Our son has Asperger’s syndrome. When he was young, we agonized over explaining his own diagnosis to him. Fortunately, a wise teacher had warned us about self-fulfilling prophecies -- if we presented “the talk” as a big deal, our son might perceive it as such, rather than as a matter-of-fact conversation about understanding himself.

As a result, we focused on all the positives we saw in our son. When an unexpected opportunity presented itself -- he noticed that most cars in the parking lot at his social group had a puzzle ribbon magnet, just like the one on our car -- we were prepared with a child’s book about the strengths of people with autism, and plans about what (and what not) to say to him about his autism.

But how would we disclose to our son his mother’s potentially deadly diagnosis – especially because he depended on her for so much of his daily needs?

Let me make clear that I am not a doctor. I write only as the parent of a 19-year-old with Asperger’s.

We asked parents on several disabilities listservs about how they had handled a parent’s medical diagnosis. Although we received sympathy, no one was able to provide any specific suggestions – we would have to make a decision based on what would be best for our family.

One thing we have long understood about our son is how much his anxieties can control his life.

Therefore, we decided that we would discuss with him only the changes he would see in his own life. 

We did not mention medical abstractions, which we knew would only add to his anxieties, especially if he did not understand them.

In particular, we did not use the word cancer, or tell him his mother's specific diagnosis. And after almost a year and a half, we still have not done so.

But we had to tell him something, to explain the drastic changes in his life that he could not ignore, such as the fact that I would be driving him to school events.

Without an explanation, our son might create his own narrative -- which could be wrong, or even worse than the reality. He is also smart enough to Google any medical terms we might use or that he might overhear.

We let his teachers and case manager know the facts, so that they could watch for manifestations at school. And my son’s needs also answered the question of how much to tell our neighbors. We shared my wife’s diagnosis with our cul-de-sac, because our son has long known to contact neighbors in an emergency.

Despite our planning, we really didn’t know what to expect from our son.

However, we were thrilled by his response. He maintained his schoolwork and Scout activities. Best of all, he applied to and was accepted to his first-choice college, all on his own. We learned of it only when his acceptance letter arrived at our house.

After that, we praised him for his self-advocacy – something we and his teachers had drummed into him since elementary school.

Finally, as we were able to resume our normal routines, I sent thank-you notes to all who had helped both us and our son, including my wife’s doctors, the hospital staff, and all of our neighbors who had supported us. We are truly grateful for all of the support we received during a very difficult time.

In retrospect, we had many reasons to be thankful.

Our son graduated from high school with honors and is now in his first year at Montgomery County Community College. After our daughter completed her master of social work degree, we had a family celebration of the many blessings we received during what those outside our family might have considered a very stressful year.

Stanley P. Jaskiewicz is a resident of Lansdale, Pa. This guest column appears on Philly.com through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than one million patients and caregivers.