6 min Read
What Parents With an Autistic Child Wish You Knew About Autism
May 15, 2021
6 min Read
May 15, 2021
As three-year old Orla’s face turned bright red, she screamed with such a glass-shatteringly high pitch that everyone in the grocery store checkout lines turned to look. The little girl held on with superhero strength to the chocolate bar she had grabbed from the counter racks. Like most kids, she loves candy and she was drawn to the colourful wrapper. But Orla’s mother knew her daughter’s medical history, which included a high metabolism, and it was a given that the chocolate would trigger hours of hyperactivity, followed by an upset stomach and mood swings. They wrestled for the candy while a dozen people watched. Many were glaring judgmentally. Orla’s mother could feel the stares. She had been given advice by onlookers in similar situations in the past: “Just give her what she wants, the poor kid,” or “Learn to control your child and she wouldn’t act this way” and “If you speak to her gently, she’ll calm down.”
But what these onlookers didn’t know? Orla has been diagnosed with autism. So it’s really not as easy as taking the advice strangers seem eager to give.
Obviously, it’s not only children with autism who tantrum in public places. Most parents have experienced similar public judgment and embarrassment. The difference is a child’s ability to understand communication, to respond to reason and then to self-regulate. Like all parents, moms and dads of children diagnosed with autism want them to be included in daily life. Unfortunately, even today, many environments don’t accommodate special needs. And what is perhaps even more challenging is the misunderstanding that still prevails on the topic of autism.
I’ve had the honour of supporting parents and families for more than 20 years, designing customized autism treatment programs. I have witnessed time and again the advocacy they must undertake, educating neighbours, teachers and family members, to encourage people to let go of limiting beliefs, and to see the strength, unique talents and humanity in their children. Here are three things that parents I work with said, in their own words, that they want others to know about their children and about autism:
In 2008, talk-radio host Michael Savage ignorantly said, “I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out.” This is one of the most common (and damaging!) myths. Of course, if the answer was this simple, Orla’s behaviour, and tens of thousands like her, wouldn’t stand out because, I can guarantee you, parents with autistic children have tried acceptable discipline just as much as any other parent. But here’s the understanding we need: With autism, a child experiences sensory input differently, may communicate differently and may understand social norms differently. As one mother put it to me, “They are not ‘difficult’ by choice.”
Yes, like any child, children with autism need and benefit from boundaries and rules. And they can learn appropriate behaviours. But unlike their neurotypical peers, simply being stern or threatening consequences does not always work to quickly shift a strong physical or emotional urge; like Orla’s grab for candy, that urge can seemingly overcome them.
Don’t stare. Don’t offer advice. But please do understand these parents are doing their very best and want a happy, smooth shopping experience as much as you do.
This parent’s words are an important reminder that we share so much in common, regardless of our gender, colour, height, weight or diagnosis. According to data from the Human Genome Project, “All human beings are 99.9 percent identical in their genetic makeup.” Children and adults diagnosed with autism have unique ways of seeing the world, of thinking and of communicating. Yet, just like all children, they want and deserve to be given a turn, to be talked to respectfully, to explore their environment, to pursue interests, to have a treat, to have a best friend and to be loved.
Unfortunately, their differences often distract from or ‘mask’ their intelligence and abilities. When a non-verbal child doesn’t respond, it is easy to assume they don’t understand. One woman named Carly Fleischmann, who was diagnosed with autism early in her life, didn’t speak a word and was thought to be developmentally delayed until age 10 when she suddenly began to type with assistance. She now has attended the University of Toronto, hosts a YouTube channel, is considered to have an above average, gifted IQ and is quite witty.
Set up play dates so your child becomes comfortable with their autistic peers. A parent in Vancouver explained, “Every child can benefit from learning about diversity and inclusion, and having an autistic friend is a great way to do this.”
We need to promote greater acceptance of autistic people just as they are, without limiting their potential because of their diagnosis. The parent who wrote the statement above has, like most parents advocating for their child with autism, had to convince teachers and sport coaches of their kid’s abilities, to give them a chance. The learning process may be longer and require many more tries and patience, but change is possible. Children with autism deserve the opportunity to learn, as much as any other child, and they deserve the accommodations and modifications that give them access to curriculum and life experiences.
Believe in the amazing talents of children with autism. Know they can learn. Then provide them with more opportunities to try. Your patience and flexibility are keys to their success and appreciated by their parents.
Jonathan Alderson is the founder and director of the Integrative Multi-Treatment Intervention program. Through 20 years of teaching experience, his mission has been to bring more love and humanity to education. He holds a Masters degree from Harvard University and is the author of Challenging the Myths of Autism, which was honoured with six awards including the Mom’s Choice Gold Award.