We were warned, and we pretty much listened. When my son Evan got his diagnosis in 2007, we didn’t Google “autism.” Our most relied-on sources of information included doctors, books and other parents.
When friends said they had an uncle’s brother’s cousin’s neighbor’s son who had autism and we could talk to them, we did. Eight years ago it seemed a little harder to find someone on the spectrum. Now it seems like everyone knows at least one person with autism.
In the months following Evan’s diagnosis we read a lot of books (and yes, we did end up looking online, too). We asked a lot of questions, and we got a lot of great information and advice. But, as we look back at some of the things we were told or read, we shake our heads in disbelief about the stereotypes and misinformation that came from trusted sources so many years ago. Here are some of my favorite fallacies.
1. The “window of opportunity” closes at the age of 5. There is no magic window of time to help a child overcome some of the challenges that accompany autism. For us, early intervention was crucial and probably most beneficial, but there’s no time limit on intervention or progress.
We panicked at Evan’s 5th birthday because his ability to verbally communicate was minimal. His meltdowns were increasing, not decreasing, and we couldn’t get him to stop demanding that each and every light be turned on no matter how bright it already was. He was almost 5, and we desperately needed more time to reach our son, to help him feel comfortable in his own skin.
Then something unexpected happened. Evan turned 6 and continued to progress in his development and desire to interact with others. Even now he acquires or masters skills and makes progress in ways we never imagined. For example, instead of just making requests when he talks, today he’s able to verbalize thoughts and feelings and often asks and answers meaningful questions.
Not so long ago, some friends whose kids are in their 20s shared the recent milestones and first-time accomplishments of their sons and daughters. Did I mention these kids are in their 20s? The window never closes.
2. People with autism lack empathy/don’t have feelings. Wrong again. Autism doesn’t make someone incapable of emotions. It just makes it hard to communicate feelings or recognize the emotions of others.
Evan saw and mostly enjoyed the Disney movie “Inside Out” (although he found parts of it boring – not enough destruction). The film is set in the mind of an 11-year-old girl where her emotions — joy, sadness, fear, anger and disgust – try to help her adjust during a family move from the Midwest to San Francisco. One of the takeaway messages from the movie is that sadness is not only OK but necessary. This message was not lost on Evan, who cried during the ending.
3. Individuals with autism are not capable of showing love. This myth seemed to hold true during the first four years of Evan’s life. Then, we did not get a sense that he felt attached to us in any way. I used to wonder if he’d even notice if suddenly we were not around.
Those years, parenting him reminded me of a child with a pet goldfish. The child loves his fish. He plays with and takes care of it by providing basic needs, like food and clean water, but the fish never appears to notice the child. While it seems harsh to compare my son to a pet goldfish, in all honesty it’s the most accurate description I can think of (as painful as it is to admit).
Fortunately, as Evan got older, he started to show us his love. He did this by playing with my hair, smiling at his siblings and burying his head in his dad’s arms. More recently, he began responding to an “I love you” with “I love you, too,” but it was something we taught him to say. We were glad to hear those three words from a child we once thought might never talk. But we still wondered if he was truly capable of reciprocating our love.
Now he totally understands. He knows how it feels to be loved, and he knows how to love. He says “I love you” spontaneously (and appropriately). Sometimes, like any kid, he says it because he wants something, but mostly it’s because he loves us. Recently he crawled into bed with my husband Jon and me, and the three of us snuggled. “This is what love feels like,” Evan said. Yes, Evan gets it because that is exactly what love feels like.
4. He will likely be really, really good at something – like Rain Man. We were so hoping to discover that Evan had an autism superpower but so far nada, zilch, nothing.
Once he heard the music from the ice cream truck and immediately played it on the piano. We thought we’d discovered a savant skill, but right now he’s a one-hit wonder. We’re fine with that. It just would have been cool to have a prodigy living under our roof. Someone’s gotta pay for the all the occupational therapy, physical therapy and social skills groups.
5. A child with autism likely will lead to his parents divorcing. “Eighty percent” – that was the statistic that kept getting thrown around as the divorce rate among families with autism. Those statistics never made sense to me because the vast majority of couples I know with children on the spectrum are still together. I once had an opportunity to spend a weekend at a retreat with 29 other moms of children with special needs, and only two of the moms were divorced. It turns out, a 2010 study officially debunked this myth.
6. People with autism do not lie. I’m pretty sure this fib was started by someone with autism. When Evan was younger, it was true – we never, ever caught him in a lie. For some reason, that changed a few years ago. Fortunately for us, like most young kids, he’s really bad at it.
Just the other day he called his brother a “fat, stupid pig.”
The entire family heard it.
When confronted with a stern motherly, “What did you say?” Evan’s first response was: “Nothing.”
I asked him again.
“I said, ‘love you.’”
These interactions remind me of the main character in the book “David Gets in Trouble,” by David Shannon. Even when all the evidence points to young David as the culprit of mischief, he always has an answer.
“It was an accident!”
“I didn’t mean to.”
“No! It’s not my fault.”
7. People with autism don’t want friends and like being alone. Yes, early on this appeared to be true. But it’s hardly the case now. Evan really likes having friends and enjoys the company of others. The problem is that he lacks the ability to spontaneously develop effective social interaction skills.
Mostly, we have to teach him these skills. As an example, he does not always know how to get people’s attention, so he will make silly noises in an attempt to engage others. We tried to teach him to look at someone and smile. He followed our advice exactly as we told him. He caught the attention of a teenage boy in a crowded elevator by smiling at him. What we failed to teach him was what to do next. He held his gaze and smile for a good 10 seconds or more. The teen shifted uncomfortably and Evan shouted, “Look, I got his attention!”
His playdates – which he asks for frequently – may look a little different because he’s often satisfied with the mere presence of a friend and does not need the interactions seen among his typically developing peers. While he still often chooses to play alone, he very much craves social interactions – but often on his terms.
Socialization is one of Evan’s biggest challenges, but he tries. Often it’s by asking people if they have spider webs in their basement or what kind of lights they have in their house. But that’s why there are social skills groups and activities we do at home to teach him the “rules” of socialization that the rest of us inherently know. But, a lack of social skills does not mean a lack of interest in socializing.
This post originally appeared on Special Ev.
The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.