"Chances Are You Know Someone with Autism"

By Dr. Maribeth Edmunds

Chances are you may have seen a TV show called “The Big Bang Theory.” Each episode involves several high IQ geeks who try to navigate a world inhabited by average people like us. By the end of each show, they resolve their conflicts and find acceptance with their like-minded friends. It’s a ‘laugh out loud’ comedy.

Sheldon

Among them is Sheldon Cooper, a theoretical physicist, whose approach to life is different from most. Sheldon has a rigid view of all things and lacks social cues and empathy for others. His friends simply shake their heads at his misguided take on those subtleties the rest of us take for granted.

Fans find humor in Sheldon’s disarming behavior. Despite his insensitivity, everyone forgives him, canned laughter notwithstanding. But, are these simply character flaws or something else?

There are those who suggest that Sheldon’s fictional traits are modeled after Asperger’s syndrome, a developmental disorder now grouped under the term Autism Spectrum Disorder (ASD). The creators of the show deny this. (Magro 2014)

You may know someone like Sheldon. Chances are you may know a friend, a colleague, or a child, who has been diagnosed with autism.

So, what exactly is ASD?

DSM stands for Diagnostic and Statistical Manual which contains basic information and criteria for diagnosing mental disorders. In 2013, the DSM 5th Edition updated its criteria for ASD into four major categories. (Note: what follows is an oversimplified summary for the purposes of this article, not to be used for diagnosis.)

A. Persistent deficits in social communication and social interaction across contexts. (one-sided conversations, initiates only to get help, unaware of social conventions)

B. Repetitive patterns of behavior, interests, or activities. (repetitive vocalizations, hand movements, or noises, atypical speech)

C. Presence of symptoms in early childhood (younger than 8, such as difficulty with sensory input)

D. Symptoms limit and impair everyday functioning. (Carpenter 2013)

Chances are you may have seen these traits in children and adults around you. That’s because there is a growing incidence of autism rates in the country. The following graph shows the dramatic rise in autism rates according to the CDC.

(Weiler 2018)

Honestly, every time I look at this chart I’m startled. It’s an epidemic that is getting worse. The national average stands at 1 in 59. And in New Jersey, the rates are even higher. According to the CDC, New Jersey has the highest rate in the nation, 1 in 34 children. (Autism NJ, 2019). If you are not startled, you should be.

So what does this mean for individuals on the spectrum? What does this mean for schools and society with so many people diagnosed with ASD?

A Story

Behind every statistic there is a story. Allow me to share the story of my son, Carl Ross.

As a child he lived in a world without words. Instead there were sounds, known as vocalizations. At one point, he had some words. They came at 6 months: “momma/dadda.” Suddenly, they faded into nowhere.

He screamed and babbled. Speech and sounds were interchangeable. He uttered words like ‘makiemutts’ ‘tungornt’ and ‘banf.’ He said them aloud over and over again, day and night. He didn’t sleep through the night until he was four years old. Instead, he roamed the house. I found him playing with toys in the dark or hiding behind the sofa, laughing uncontrollably.

Then, there were other moments … violent moments. He would tantrum for hours on end. He would stim, spin, and throw things at the ceiling or down the stairs. The worst was banging his head on the walls and floors, biting himself. That was the worst.

My husband and I struggled with our first-born child. We were desperate. Another child was on the way. How would we manage? Why was this so hard? Few people knew about autism because it was so rare. Meanwhile, it tore our family apart.

We sought help.

At the time of his diagnosis in 1987, the incidence of autism was one in 10,000 births. We were told that our four-year old would be the only person with autism we would ever meet. The professionals also said I was to blame for my son’s behavior. They sent me for counseling. I later learned that these experts were wrong, dead wrong. The damage to me as a mother, however, was already done. It was permanent.

By the time Carl Ross was 11 we found our way to Eden Autism in Princeton, New Jersey. Dr. David Holmes, the CEO at the time, welcomed us with open arms. Our lives changed.

With the help of Eden’s experts who understand Applied Behavioral Analysis, discrete trials, reinforcements, and speech therapy, Carl Ross is in a far better place today. This took decades.

Today, our son lives in a supervised apartment and works daily. He is a fulfilled young man. He loves to dance, bowl, and ski. He still believes in Santa Claus. Please, don’t tell him otherwise.

Success. Yes, but it has been a long journey, one grounded in a persistent belief in what’s possible despite odds. Eden gave us hope.

Towards Full Inclusion

Chances are you may know similar stories. And you may have heard of organizations such as Autism Speaks, that raises awareness regarding autism in children.

But every autistic child will grow up to be an autistic adult. That’s simply the current reality. And this means that society will have to reimagine how a growing number of adults with autism will be welcomed into the workforce and be productive in the larger community. It’s a tall order.

So, it’s time for society to move from awareness towards inclusion. To do so, we must develop deep understandings about the realities of autism, not simple caricatures found in the Sheldons of TV, however endearing these characters may be.

Chances are your life will be touched by someone with ASD in some way, if not now, soon. What will you do to make a difference?

January 2, 2020