“Are you sure she has autism?”
“She doesn’t look like she has autism.”
“I know someone with autism, and she doesn’t act anything like him or her.”
I’ve heard comments like this since our daughter, Avery, received her autism diagnosis four years ago at the age of two. And before becoming immersed in learning about her diagnosis, I thought many of the same things.
But she has been evaluated twice (once by a developmental pediatrician and two years later by a child psychologist) and both evaluations have come back with a resounding “yes, she has autism.”
Do I fault people for questioning her diagnosis? Absolutely not! She doesn’t fit the stereotype that exists for children with autism. But, therein lies the problem. It’s been said that if you’ve met one person with autism, you’ve met one person with autism. But still, a stereotype exists in which many people assume all children with autism have the same characteristics.
When most people think of children with autism, they may think of a child who flaps around his or her arms, can’t make eye contact, regularly lines up objects, has major meltdowns when a routine is changed, doesn’t like to be touched, considered anti-social, and oftentimes is non-verbal. Well, anyone who’s met Avery knows that she is NONE OF THOSE THINGS. Hence, the questions.
Avery is highly verbal, loves to be cuddled, doesn’t get bothered by changes in routine, and enjoys being around other people. But, she does have many autistic traits, some of which people may not regularly associate with autism.
She struggles with knowing how to play with other children and is highly sensitive to many different sensory stimuli. Her temper tantrums are extreme and often turn into her trying to hurt herself or others. She’s highly impulsive, has a very short attention span, and has a tendency to repeat the same things over and over again. She also becomes completely fixated on specific activities so much that it’s all she wants to do. For example, I can’t even tell you how many times I’ve played Old Maid in the last few weeks. Before that, it was Scrabble.
In the past few years, I’ve connected with many parents who have children with autism and none of their children are the same. Do some fit more of the “normal” stereotype? Yes, but many of them display some of the more atypical traits, like Avery does. And that’s where there needs to be more education on the term “spectrum.”
You’ve probably heard the term autism spectrum disorder. Many people think of it like a continuum that worsens as you go “up” the spectrum. Even I thought that until a few months ago. But, that’s not true at all.
Instead, think about it as a spectrum of colors where each of the colors represent various autistic traits. Some may have more blue and red traits whereas others may be more yellow and green. The challenge in helping people understand this complex diagnosis is there are so many color combinations and gradients of color that come together to form each child’s specific autistic traits.
Here are a few more things you might not know about autism:
- One in 54 children are diagnosed with autism (this number continues to rise).
- A diagnosis can be made as early as 18 months old.
- Boys are four times more likely to be diagnosed with autism than girls.
- Autism may be under-diagnosed in girls.
- There is no known cause of autism.
With the incidence rate rising and the age at which children are being diagnosed being younger and younger, there is so much more education we all need to learn. At this point, I think people are fully “aware” of autism, it’s time to move from awareness to understanding.