What Not to Say to Parents of an Autistic Child
- That's why I didn't get my kids vaccinated!
- You're worrying over nothing. Your brother went through a phase like that and he's just fine.
- You need to be firmer! Your child is manipulating you.
- What's his special ability?
- Is there a cure?
- Believe me, I know exactly what you're going through!
As the mother of an autistic son, I can't begin to tell you how many times I've heard these comments from friends, family, and strangers. While they may seem innocuous to you, they can be extremely hurtful to those of us with youngsters on the spectrum.
Don't Let Callous Comments Create More Pain
Ten years after receiving the diagnosis, I can say that having a son with autism has made me a stronger person. In those early years, though, 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 and merely said something insensitive out of awkwardness or ignorance
According to the National Survey of Children's Health, 1 child in 40 has been diagnosed with autism in the United States. Many of us know and love the moms and dads of these kids and would never want to say anything to cause them more grief. With that in mind, I offer up five things you shouldn't say to parents of an autistic child:
1. Did You Have Him Vaccinated?
While most people are well-meaning but just say the wrong thing, I cannot be so generous to anti-vaxxers- those who fervently believe vaccines cause autism. Members of this militant subculture approached me 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. Driven by their political agenda and not an ounce of compassion, they'd immediately ask me, “Did you have him vaccinated?” When I replied “Yes,” they would proceed to tell me why it was the wrong thing to do with a know-it-all tone, even though they possessed no credentials in medicine or science.
Mothers like me already suffer enough guilt, obsessing over whether or not we did something during our pregnancy to cause our youngster's autism. My self-reproach led me into therapy, years of taking anti-depressants, and a decade of living in dark shame. Believe me, I didn't need any outside forces to make me feel even worse!
Based on my personal experience, I wasn't surprised to read that the vast majority of anti-vaxxers are women, some with their own mental health issues. Researchers studied their posts on Facebook (their preferred vehicle to disseminate misinformation) and discovered a great number of similarities among anti-vaxxers. Many believe they're victims because of the beliefs they hold. According to the study, their posts were "quite highly negative in tone" and choke-full of "conspiracy-style beliefs placing blame on the government and media." No matter your beliefs, guilt-tripping mothers of autistic children is not the way to go.
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, but nothing that warrants alarm. They may blame it on permissive parenting and suggest spanking the children, putting them in time-out, sending them to bed early, and disciplining them more frequently. Needless to say, their stubborn refusal to accept that autism is the cause of the behavior can create additional heartache for moms and dads.
In my experience, older friends and relatives wanted to share their lifetime of wisdom with me and were unwilling to acknowledge that they didn't know a thing about autism. However, I already had capable doctors and therapists informing me about my son's condition and recommending the best treatment plan for him. What I lacked and desperately needed were folks who would listen to me, feel my pain, offer me comfort, and make an emotional connection.
In I Thought It Was Just Me: Women Reclaiming Power and Courage in a Culture of Shame, Dr. Brene Brown writes about what people desire the most when they're struggling: empathy. She writes, “There are times we will miss the opportunity to be empathic. Mental health professionals often call these 'empathic failures.' There are also times when the people around us will not be able to give us what we need. When this happens on occasion, most of our relationships can survive (and even thrive) if we work to repair the empathic failures. However, most relationships can’t withstand repeated failed attempts at empathy."
Brown's words made me understand why my bond with my mother broke after my son's diagnosis. Her constant lack of empathy was too hurtful to me as she denied or trivialized the situation with comments such as: "At least he can talk. At least you have another child. At least you can get pregnant again."
When communicating with parents of autistic children, people should put aside their egos (their need to be all-knowing and dispense advice) and connect on an emotional level. Theresa Wiseman, a nursing scholar, established the four attributes of empathy that we should all keep in the forefront of our minds:
- To be able to see the world as others see it.
- To be non-judgmental.
- To understand another's person's feelings.
- To communicate the understanding of that person's feelings.
3. What's His Special Ability?
As much as I adored Dustin Hoffman's performance in Rainman, that 1988 Oscar-winning movie has created a lot of grief for parents of autistic children. I immediately knew someone had seen the film when they'd approach my son and me, asking enthusiastically: "What's his special talent?” When I'd reply that he didn't have one, they'd look disillusioned as if I told them there's no Santa Claus. It angered me that my child had to have some extraordinary ability to warrant their interest.
Because they're exceptionally gifted in one specific area that can't be duplicated by other human beings, autistic savants are fascinating to us. 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. Yet, autistic savants are incredibly rare. Only ten percent of those with autism ever show any savant talents.
With 1 child in 40 on the spectrum, we need to appreciate their uniqueness whether they're savants or not. Dr. Devon MacEachron, a psychologist who works with autistic kids and their families, says it's time that society embraces those with neurological differences and not see their condition as a disorder, dysfunction, or disability.
In the video below, Dr. Devon MacEachron makes the argument that people with neurological differences such as autism should be valued in society.
4. Is There a Cure?
When my son was small, it always pained me to get this seemingly harmless inquiry. It made me think that the person who asked it didn't value my son as he was and wanted him to change so he'd be normal. When I'd reply that there are treatments for autistic kids but no cure, I'd get a "you poor thing" look of pity.
Little did they know how starved I was for someone to say something positive about this boy I loved dearly and who was remarkable in so many ways. It would have meant the world to hear a good thing about my kid, especially from family and friends. A simple observation such as: “He sure likes to play with his trains” or “He sure is a good listener when you read to him” would have lightened the heavy load I was carrying.
If people would simply slow down and watch without judgment, they would notice that kids on the spectrum have many strengths. While every child is different, researchers have taken note of some positive attributes that many autistic kids share:
- A keen eye for detail
- An enthusiasm for delving into subjects deeply and becoming experts
- An outstanding ability to recognize patterns
- An excellent long-term memory
- A heightened perception in vision, taste, and smell
- A dedication to following rules
- A high intelligence especially in STEM (science, technology, engineering, and math)
5. I Know Exactly What You're Going Through!
Without a doubt, the response I heard the most when I revealed my son had autism was: "I know exactly what you're going through!" Then the person would hijack the conversation and tell me about their uncle, co-worker, niece, neighbor, or stepmother's granddaughter who was on the spectrum. Instead of feeling heard, comforted, and relieved of my suffering, I felt minimized, agitated, and over-burdened.
Shifting communication back to one's self is a habit of too many. Sociologist Charles Derber dubbed it "conversational narcissism" and noted that it was especially prevalent among Americans as an attention-getting practice. As the parent of an autistic child, it made me feel even more alone, unheard, and unsupported. It happened to me so often that I eventually went to therapy, paying money so I could express my pain without being interrupted or one-upped.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2016 McKenna Meyers
McKenna Meyers (author) on September 17, 2016:
Yes, I've been told that Silicon Valley is chock-full of people on the autism spectrum. They found their home.
Kate Swanson from Sydney on September 17, 2016:
Yes, I think you're right. Maybe men don't place so much emphasis on social skills either - the fact that the boy doesn't have friends, doesn't seem to bother him. The good thing in this case is that the son is extremely intelligent so he's doing well at school academically, and will probably do well in a scientific career like his father.
McKenna Meyers (author) on September 17, 2016:
This sounds very familiar, Marisa. The experts would often say to me in regards to my son and husband: "The apple doesn't fall far from the tree." Those two are very much alike -- not surprisingly -- and we, too, had a hard time getting a diagnosis of autism. The first round was deemed "inconclusive" by the doctor. Then we went to the foremost expert in our area. That time it was an official "yes". Even before the diagnosis of autism, our son was receiving speech and occupational therapy 3 times a week because he had Sensory Processing Disorders (not unusual with autism). The occupational therapist was AMAZING and such a support to me as a parent navigating this maze with my first-born child. Even though there are drawbacks to getting a label slapped on your child, the good far outweighs the bad. Parents want to get help ASAP -- through the schools or in the private sector -- because early intervention has the best results. Also, there are many services available for young children that dry up as they grow older. Good luck to your friend. I think dads find it especially hard to hear anything negative about their boys.
Kate Swanson from Sydney on September 16, 2016:
My friend is currently going through a tough time after her son's school has suggested he may be on the autistic spectrum. After a psychological evaluation they've decided he's not - BUT she is doubtful, because a lot of the decision was based on questioning both herself and her husband about her son's behaviour. As the questions continued, her husband aggressively denied their son was exhibiting any of the behaviours even though she knows he does. What's more, she now recognises many of those behaviours in her husband!
Personally I've always thought her son had something like Asperger's - very intelligent but socially uncomfortable, easily spooked and lacking in emotional response.
So she is now torn, of course you don't want to think your child has a problem, but if he was diagnosed then he'd be more likely to get the help he needs.