WHAT NOT TO SAY – A CONVERSATION WITH MY SISTER

I once shared a blogger’s list of things not to say to the parent of a child with Autism. Afterwards my sister and I had a conversation about it, the things she liked about it, and the things that she did not agree with. 

My sister is not the parent of a child with Autism. She is aunt of a child with Autism and admittedly has the perspective of someone who does not entirely understand the disorder, however through her love of her nephew she has an strong interest in learning more. We talked about some of the individual points from our respective perspectives.

“He can’t be Autistic because….” and “He’ll probably grow out of it”

My sister completely agreed that these are inappropriate things to say. As she put it “This is annoying as all get out. My feeling would be ‘I am this child’s parent – don’t contradict me.'” With her kind interpretation of people’s motives, she suggested that it is a line to make the hearer feel better without really knowing how to make the hearer feel better.

I also suggested that when people are less self-aware, it might be a line to make the speaker feel better. Either way, we are both of the opinion that this is a do-not-say.

“I read that Autism is caused by….” and “I heard that you can cure Autism by….”

We had a very interesting conversation about these statements. My sister saw them as potential opportunities to open a discussion about Autism to increase awareness. She said she could see them as conversation starters with a goal to be educated on the topic since many don’t know much about it.

She said she was particularly intrigued by the blogger’s comment about the word “cure” and how a lot of people on the Autism spectrum like who they are and don’t want to be cured.

She said it made her think about what made up who she was and whether she would want to change anything about herself.

An important point in our conversation was clarity between physical issues versus behavioral issues. The neurology of Autism is how my child’s brain was physically formed, like the color of his eyes and the shape of his nose. Autism manifests in him through specific, measurable behaviors, but those behaviors alone are not what Autism is.

We thought that perhaps people mistakenly assume successful adaptation of behavioral issues to what society considers normal is a “cure,” when in reality the fact of how the brain was physically formed will always exist.

As Autism is a neurological disorder with behavioral cues, there can be no cure without somehow re-forming the brain. The ability to adapt is as much a part of the brain as is the neurology that causes Autism. The willingness to adapt is fundamental to a person’s character.

Looking at it another way, if someone who is left-handed learns to be right-handed because it is easier in a dominantly right-handed society, does that mean that they are “cured” of being left-handed? No. The proclivity in the brain to be left-handed is always there. It is how they were made.

“You’re my hero!” “God knew you could handle this!” “Special kids for special parents” and other such platitudes.

My sister and I had our deepest conversation on this one. She was not sure what the difference was between “you’re doing a great job” and calling someone a “hero.” She also noted that even though many people would rise to the occasion and do the same in the same circumstances, an Autism parent could still could be someone’s hero. “You don’t get to tell me who my heroes are,” she said.

She looked up the definition of “hero” – a person who is admired or idealized for courage, outstanding achievements, or noble qualities. We talked about a family we know who had several children born developmentally disabled, from moderately impaired to significantly impaired. The family’s decision to raise their children at home was undeniably courageous.

She also noted that not all parents would necessarily do the same thing in that situation. People can try to be great or not, and until faced with that situation, it is hard to predict what people would do. Her final point was that people who are praise-oriented may really appreciate these comments.

My response was a little different. Being called a hero or special reminds me that we are different. I feel isolated and alone when someone says something like this, and get no pleasure or reassurance from it.

Like the list’s author, I would much rather hear about how great my son is doing, and take pride in his accomplishments because we can all share in that.

To read my sister’s perspective, please click here.

What Not to Say