By Jennifer Costa
As the mother of a child diagnosed with autism spectrum disorder and ADHD, I am keenly aware of the challenges faced by those caring for someone with an invisible disability. As caregivers, we often find ourselves having to make the inevitable revelation.
Maybe there’s been a meltdown, or a puzzled look from someone who’s addressed my son and not received a response. “Please be patient. My son has autism,” I tell them. The typical reply is, “Oh, I didn’t realize,” sometimes followed by, “but, he doesn’t look autistic.”
Autism and bullying
In light of October’s National Bullying Prevention Month, it’s important to be aware of the challenges faced by those with invisible disabilities, and those caring for them. For those within the autism community, bullying is a very real concern.
Kathy Henley is the President of Autism Research and Resources of Oregon (ARRO), and mother to a 30-year-old son with autism.
“Because communication and sensory processing problems are not physically or visually apparent, these special individuals can experience a wide variety of problems when they interact with the general public,” Henley says. “They sometimes have behaviors that land them in trouble with people in control. I have seen them put in jail because of the way they answered or didn’t answer questions. When frightened, they can react erratically. Activities that would not frighten neurotypical individuals can be overwhelming to these special individuals. The person with special challenges can look so normal that they can confuse people who expect a neurotypical response.”
Bullying is not a minor concern. Henley has experienced this first-hand.
“I have seen [people with autism] refused access to public transportation when using a special needs pass. I have seen them ridiculed by people who should have known better. I have seen them be reprimanded because they could not follow directions. I have seen them get their caregivers in trouble because of their behavior. I have seen the special individuals manipulate others so that they could get what they wanted. I have seen them fail intake protocols and end up not qualifying for services and housing assistance that they truly need.”
The invisible nature of autism
Robert Parish is a filmmaker, autism advocate and author of the book, Embracing Autism: Connecting and Communicating with Children in the Autism Spectrum. He is also the father of a 22-year-old son with autism. I recently had the opportunity to speak with Parish about the challenges of caring for someone with autism, and its invisible nature.
Parish suggests that the invisibility of autism can lead to harsh judgment. This isn’t limited to the person with autism, but also their parents and caregivers as well.
When a child looks “typical,” going to a public place can be tough. People’s quick and intense nature of reactions is simply “shocking,” Parish says. People don’t know what to think when they experience a meltdown, or intense stimming behavior and the newness can lead to fear.
Parish understands how removing the invisibility of a disability can lead to better understanding. He recounted the story of a boy with autism who, after an injury, appeared outwardly to be disabled. Not surprising, this led to a greater acceptance of the behaviors that he had displayed prior to the injury.
My own daughter was a late walker. When she was not yet two, we visited a specialist who recommended special orthotic devices and aggressive physical therapy. She has always been an outgoing child and her sparkling eyes, strong will and bright pink leg braces made her especially memorable. Walking into a store usually meant that we were greeted with ear-to-ear grins and friendly offers of assistance.
While smiles and helpfulness are certainly extended to my son, I encounter them far less frequently, perhaps due to the fear of behavior that is, to some, unfamiliar.
Autism is certainly not the only invisible disability, but, in Parish’s opinion, its invisible nature is particularly profound. Because of the quick and dramatic behavioral changes associated with autism, suffering in silence just isn’t an option.
Where do we go from here?
Advocacy efforts are certainly on the rise. Even those who have never met someone with autism, have certainly heard about it. What’s more difficult to understand is the concept of a “spectrum.” Even as a social worker, I had difficulty comprehending exactly what this meant until I had a child of my own and met more and more children with autism.
Autism manifests differently in each child, exhibiting their own unique behavior and characteristics. Therefore, when people encounter children with autism, the variety and differences of characteristics can be extremely challenging to explain and understand to outsiders. It’s the beautiful variety of those on the spectrum that also enhances that lack of understanding that can cause people to assume that a child’s behavior is simply due to eccentricity or bad parenting.
With so many autistic children in mainstream educational programs, they can find themselves particularly vulnerable to bullying. This bullying can lead to depression, academic issues and increase in the severity of negative behaviors. Research published in the archives of Pediatrics & Adolescent Medicine indicate that children with autism are more than twice as likely to be the victim of bullying, than their neurotypical peers.
Parish suggested that it’s important for those on the autism spectrum to understand that this is not about them. He recommends explaining this to your child, even if he or she is nonverbal. Talk to people on both sides, advocate and encourage understanding.
With the Centers for Disease Control reporting 1 in 68 children are affected with ASD, encountering autism is almost inevitable. It’s our job as parents, teachers and adults with autism to take a stand against bullying, spread the word about autism and foster empathy.