Missed Genius: The Misdiagnosis of Autism in T&T

18 Apr Missed Genius: The Misdiagnosis of Autism in T&T

Insomnia hit me the other night, and I found myself in front of the TV, waiting for “Forrest Gump” to lull me back to sleep. Instead, I found myself more alert and more wrapped up in Forrest’s story. Not just because he tells a helluva tale, but also because as I watched it I became more and more convinced….

Forrest Gump is autistic. More specifically, I believe he’s supposed to be displaying characteristics of Asperger’s syndrome – one of the autism spectrum disorders. It’s not his low IQ, because there’s no correlation between Asperger’s and being ‘slow’. In fact, many “Aspies” are absolutely brilliant.

Instead, it’s a series of clues:

His very literal interpretation of speech.

Jenny: Do you ever dream, Forrest, about who you’re gonna be?

Forrest: Who I’m gonna be?

Jenny: Yeah.

Forrest: Aren’t I going to be me?

His superior performance in areas requiring attention to patterns and sequences.

Forrest: Done, Drill Sergeant!

Drill Sergeant: Gump! Why did you put that weapon together so quickly, Gump?

Forrest: You told me to, Drill Sergeant.

Drill Sergeant: Jesus Christ! This is a new company record.

Then, there was his uncanny ability to maintain singular focus, as demonstrated in his excellence in playing ping pong.

“Hollywood’s depiction of autistic… is all many people have to relate to autism.“

I haven’t seen the movie in years, but in that time, I’ve had my own encounters with autism and Asperger’s. It was odd seeing it this time around, through new eyes, fitting together all-too familiar puzzle pieces.

See, when my son was born, I was completely wrapped up in being a new mother. I revelled in the time my maternity leave allowed me to spend with him, paying attention to doing the right thing – establishing routines, nurturing, watching for developmental milestones. And very early on, I knew something was up. He never gazed, cooed and smiled. He just stared. Straight through me.

It was like I didn’t exist to him. Or rather that my existence was purely functional – to feed, to change diapers, and to burp him. At first I thought I was overreacting, maybe even going through post-partum depression. But I kept seeing signs.

He would sit as still as a statue, and completely tune out everyone around him. On one of his visits to the doctor, it was recommended that his hearing be checked. It was perfect. He didn’t babble like his older brother did at his age, but it wasn’t that he couldn’t speak. He just didn’t seem to want to.

He didn’t seem to like people either. Everyone got a kick out of how sure he was of himself, and how “on his own scene” he was. To them, he seemed just like every other kid. But I knew.

He didn’t make eye contact.

In a group of kids, he’d sit apart and play on his own.

Any change to his routine was likely to have him break into tantrums like I’d never seen before.

He would hit head on the wall when he’d get frustrated.

I knew these were classic signs of autism.

But he loved. He adored his father. I thought autistic children were emotionally locked away.

“We need to increase our awareness as parents, aunts and uncles.”

However, the fact is that autistic children can feel love just like anyone else. They just aren’t hard-wired to understand the rules that govern social interaction, and expressing that love. I’ve heard it put this way; they feel love, but they don’t feel the need to actually express that love in a visible way. So they completely don’t get the need some people have to hug and kiss at every encounter. And if that sounds strikingly like someone you know, I wouldn’t be surprised.

Hollywood’s depiction of autistic savants in movies like “Forrest Gump” and “Rain Man” is all many people have to relate to autism. But the fact is that most people on the spectrum are nothing like the characters in those movies.

And because the spectrum is so wide, people on opposite ends of the spectrum may exhibit vastly different levels of social interaction. The cases you’ll tend to see on the news or with breakthroughs in communications are generally those on the lower end of the spectrum. They may be non-verbal, require specialized care and never experience traditional schooling and worklife. But it may surprise you to know that many children with Asperger’s syndrome go undiagnosed all their lives, and grow into adults holding regular jobs, completely integrated into society.

With some studies estimating Asperger’s as affecting approximately 1 in 250 people, you probably know an Aspie personally. Think hard about some of the signs:

• Socially awkward: may have difficulty judging personal space boundaries.
• Communication is very literal: speech patterns may be unusual or very “textbook”, may have difficulty “getting” sarcasm or jokes.
• May have a very intense interest in one subject matter/hobby: mechanics, building models, and painting, for example.

Aperger’s is far too common for us to continue to think about it as a disability. I recognize that it poses some challenges to the status quo, and that it requires some flexibility on the part of caregivers and teachers during childhood. But with the flashes of genius that come with it, and the contributions of such famous Aspies as Einstein, Yeats and Sir Isaac Newton, can we really call this a disorder? I often wonder if the genius and creativity of our people is based, in part, in its unrecognized prevalence in our society.

We owe it to ourselves to wake up and finally acknowledge that autism is right here in Trinidad and Tobago, and it’s highly under-diagnosed.

We need to increase our awareness as parents, aunts and uncles because early intervention and active coaching in social skills by trusted relatives in the home environment can go a long way towards easing awkwardness and improve the quality of a child’s life.

We need to empower our teachers to recognize the signs, and to understand the underlying triggers that affect performance in the classroom, so that they can respond effectively to children’s anxiety in response to unexpected changes to the routine, to overstimulation, as a result of a sensory overload, to the learning pattern of spikes and plateaux.

We need to appeal to our medical students, so that they recognize the dire shortage of occupational therapists and trained specialists in the field in Trinidad and Tobago, so that we make diagnosis and therapy accessible to all.

Without these, misdiagnosed children fall far short of their potential for genius, and go through their lives believing themselves to be troublemakers, slow learners, and misfits.

First identified in 1944 by the scientist for whom it is named, it wasn’t until 1994 that Asperger’s syndrome was officially recognized by the American Psychological Association. Fifty years. T&T’s already behind the curve. Let’s hope it doesn’t take us another 50 years before we’re finally ready to properly support the autistic community among us.