Communication conundrum

The Person Inside

hari-srinivasan_online

What if you had no voice and no handwriting skills? What if your body was so disorganized that you couldn’t even do sign language or consistently point to what you wanted? What if there was no way for you to consistently communicate your thoughts and feelings to those around you? Would any of your needs be met, and would you be able to engage in any sort of meaningful social relationships and friendships?

For many nonverbal individuals with autism like me, this is our daily reality. It underlines the fact that communication is fundamental to society.

Communication issues often mask intelligence in the autism population, affecting our inclusion in society. If you don’t have the ability to communicate effectively, you are hard-pressed to exhibit your intelligence. If you add body disorganization to the mix, you can’t consistently point to the right response among the set that the therapist places in front of you. After multiple incorrect responses, the therapist arrives at what seems like a logical conclusion: “This individual is incapable of learning.”

This was my story until I turned 13.

Learning to communicate through typing as a teen totally turned my life around. That was the start of my journey to UC Berkeley. With communication, I could exhibit that I was an intelligent individual who deserved access to the mainstream education that many of my neurotypical UC Berkeley peers have taken for granted all their lives.

A child that is perceived to be intelligent will automatically be placed in a stimulating classroom. A child who may be as intelligent but who is perceived to be incapable would be placed in a drastically different environment. The outcome for the former would be positive, while the outcome for the latter can only be frustration, often expressed in the form of maladaptive behaviors — which is a catch-22. Adding insult to injury, the latter is now labeled as both unintelligent and difficult.

I was that difficult child acting out in frustration and dismay.

The basic issue may be pure confusion over input and output systems. I believe that intelligence is an output issue, since you have to exhibit your intelligence to earn that label. But I learn at the same rate as my typical peers through observation and inference — in other words, my input systems are functioning fairly well. The mind of an autistic person can truly be a marvel, since we interact with our environment in rather unique ways, which lends unique perspectives.

What differentiates us is our inability to exhibit those skills, especially if you are nonverbal like me. Nothing beats being able to talk. The speed and social opportunities it offers cannot be overstated. I find it frustratingly awkward to slowly type on a device while another person fidgets near me, not knowing whether to look at me or at my keyboard over my shoulder.

The way I function in a social setting becomes so much more difficult when input systems are impaired. Think of it like static interference in internal signals — my mind may think one thing, but the signals get mangled in the motor task of carrying that out, be it through handwriting with my fingers or motor-planning speech with my mouth. We may end up smiling when we should be looking sad upon seeing someone fall.

I am well aware of these deficits, which triggers parallel loops of anxiety, further worsening the signaling systems. Think about it: A typical student may get stressed during an interview and fumble as they attempt to retrieve information from their mind and formulate an elegant response.

My every attempt at communication is like being under a stage spotlight — I get all nervous and start fumbling. My very attempt to effectively communicate may become a self-defeating prophecy further eroding my coping skills. Ironically, coping skills themselves are often tied to effective communication.

If intelligence is thought to be an output issue, then we should not assume that an autistic individual is incapable of learning based on his mannerisms. Instead, the focus should be on improving communication skills while providing a stimulating environment.

We autistics may yet surprise you, and we have a lot to contribute to society. I shouldn’t have had to wait for a chance meeting as a teen to lead me to communication. My special education teachers should have taught me typing instead of trying to restrict me to the dozen picture icons they decided I needed. Of course, other autism issues such as sensory dysregulation can make the act of typing itself hard. I am still a one-finger typer for the most part, and it took me a really long time to type out this one article.

Every day, I walk by the labs and research facilities on campus and I think, “Surely UC Berkeley can research a solution for us.” #InThisGen, I want to call on campus innovators to develop systems that make getting out what’s inside our heads easier, perhaps through the development of artificial intelligence or neural link technology. I want us all to help the world see the person inside.

Hari Srinivasan writes the Thursday column on his experience as a nonverbal autistic student. Contact him at [email protected] and follow him on Twitter at @HariSri108.