What to Say to the Parent of an Autistic Child and What to Avoid?
Most People Were Well-Intentioned but Just Didn't Know What to Say
Ten years after receiving the diagnosis, I can say that having a son with autism has made me a stronger person. But, in those early years, I was often left devastated by the callous comments of family, friends, and strangers. With the perspective that comes with time, I now appreciate that most people were well-intentioned. They merely said something insensitive out of awkwardness or ignorance. According to the Center for Disease Control, 1 in 68 children has been identified with autism spectrum disorder. Many of us know these kids and their parents and want to impart words of support and compassion. With that in mind, I offer up Seven Things You Shouldn't Say to Parents of an Autistic Child.
A Simple Acknowledgement of the Hard Times They're Experiencing Is Worth a Thousand Words!
1. Do You Get Him Vaccinated?
While I excused most rude comments, knowing the people were well-meaning, I cannot say the same for anti vaxxers. I met members of this militant subculture on a regular basis when my son was young, and I must say they were some of the most arrogant and hardhearted people out there in the world. Realizing my child had autism, they felt compelled to ask me, “Did you have him vaccinated?” in order to bolster their belief that vacinnes cause autism. When I replied “yes,” they would proceed to tell me why it was the wrong thing to do even though they possessed no medical or scientific credentials.
These condescending individuals had an agenda but no compassion. Moms and dads who have children with autism already suffer from enough guilt, wondering whether something they did or did not do caused their youngster's condition. My guilt led me into therapy and years of taking anti-depressants. I suggest anti-vaxxers keep their comments confined to their Facebook pages and stop ambushing people in public. It's not nice.
Jimmy Kimmel and a Group of Doctors Hilariously Support Vaccinations by Ridiculing Anti-Vaxxers
2. Don't Worry. It's Just a Phase.
I heard this frequently from well-intentioned senior citizens (mostly my mother and her friends). Many older folks have no firsthand experience interacting with children who have autism so they don't recognize the early signs. They just see the behavior as odd or antisocial but nothing of major concern. Their attitude is: This too shall pass.
While these people have no evil intent, they should keep their opinions to themselves because they're ignorant. It's extremely important that parents take action if their youngster displays behavior indicative of autism (e.g. not responding to their name, not engaging in pretend play, and not pointing to objects of interest). Moms and dads should be praised for getting their children the early intervention services that are so beneficial. They should not get deemed worry warts as I was.
3. What's Wrong with Him?
In my opinion, this question is perfectly okay when said by a child. After all, kids are curious and not yet schooled in political correctness. Grownups, however, need to reframe the inquiry in a way that's more sensitive – acknowledging the youngster as a whole person and not just a weirdo who's acting strangely.
When my son was small, he did a lot of stimming (self-stimulation) when he was excited or anxious. He'd flap his hands rapidly like a baby bird, frantically trying to take flight. When at the park or school playground, this behavior would inevitably attract attention: lots of stares, horrified looks, and rude comments. I really appreciated those who showed genuine concern and interest, saying: “Is he okay?” or “Why does he do that?” They were non-judgmental and open to learning about autism.
4. Will He Ever be Normal?
This frequent inquiry just tore me up, causing me much heartache. I loved my son deeply and cherished all the good things about him. When people asked this question, I knew they only saw his deficits and wanted him "fixed." I knew they didn't see his true worth as a human being.
Since I didn't own a crystal ball, I couldn't look into the future to answer their question. While there's no cure for autism, some people improve as they grow older. My son is now 16-years-old and only a keen observer would detect he's on the spectrum.
5. What's His Special Ability?
As much as I adored Dustin's Hoffman performance in Rainman, that 1988 Oscar-winning movie has created a lot of pain for parents of children with autism. When my son was younger, I immediately knew someone had seen the film when she'd approach me and ask eagerly, “ What's your son's special ability?” When I replied that he doesn't have one, she'd become immediately defeated as if I'd informed her there was no Santa Claus.
Because they're exceptionally gifted in one specific area, autistic savants are fascinating to people. Hoffman's character in Rainman, Ray, could perform rapid mathematical calculations. In one memorable scene, a box of toothpicks gets dropped on the floor and Ray counts them instantly. Other savants are talented in music, able to perform an entire piece after hearing it only once. But, when people assume all people with autism are savants, it shows their ignorance. Autism now affects 1 out of every 68 children so people really need to educate themselves about it.
Dustin Hoffman's Character in Rainman is an Autistic Savant. Too Many People Think all People with Autism are Savants.
6. Is There a Cure?
There is no cure for autism. However, a small percentage of people improve so vastly they no longer meet the criteria for a diagnosis. Treatments are especially value during the early years and include speech and occupational therapies, parent education, and social skills training.
As a parent, I never wanted to think others were judging my son harshly, but this question made me realize they were. It would have been so marvelous to hear something positive about my kid, especially from family and friends. A simple comment such as: “He sure likes to play with his trains” or “He sure is a good listener when you read to him” would have meant the world to me and would have lightened the heavy load I was carrying.
7. I Know Exactly What You're Going Through. My Sister/Aunt/Cousin/Neighbor/Friend Has a Child with Autism.
As the parent of an autistic child, I encountered many people who felt compelled to tell me about someone they knew who had autism. I suppose they had good intentions, wanting to make a connection with me so I didn't feel alone and unsupported. The conversation would always start with the same seven words that I began to dread, “I know exactly what you're going through...”
These words rang so hollow to me because no two children with autism are alike. Autism is a spectrum disorder, meaning its symptoms range from very mild to very severe. While most people with autism have certain traits in common (e.g. language difficulties, struggles with social interactions), they are different in other crucial ways.
My son, for example, is not impaired cognitively, but others with autism are. When he was little, people often saw him stimming and assumed he had an intellectual disability. They would talk to him condescendingly or avoid him. Instead of unloading their stories on me, it would have been so much better if these people would have just listened about my son's unique story.
Autism Is a Spectrum Disorder. No Two People Are the Same.
With more people getting diagnosed with autism spectrum disorders (both kids and adults), it's important that we all educate ourselves on the matter. These are our family members, friends, neighbors, and co-workers. I love this humorous and poignant memoir, written by a man who wasn't diagnosed with Asperger's until he was 40. Too many of us only see the negative aspects of such a diagnosis, but this book celebrates many of the positives. It made me hopeful for my son.
A Touching Memoir by a Man Who Wasn't Diagnosed Until He Was 40
This Funny and Touching Book Shows the Uniqueness of Asperger's
As the mother of an autistic son, I want everyone to know that autism is a spectrum disorder and no two people are the same. Some get affected in a severe way and some in a mild way. People with autism and Asperger's have rich and varied lives. Many of the people that surround you at school, work, and church have autism or Asperger's. You just don't know it!
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