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.

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  • Wayne Lee

    I am happy to read your articles and you are an inspiration to those who have autism and those who wish to understand autism more. My son has autism and I am always trying to learn how to help him more. I also happen to be a physician and find your experiences and insights very helpful. Best wishes to you in your pioneering endeavors.

  • Ramtamtam **still nasty**

    Excellent article!

    I have a non-verbal child who never liked to use PECS and who found the picture options on communication tablets way too distracting. He prefers typing and has now access to a tablet with keyboard in the classroom thanks to his awesome new teacher and uses it for school work and to communicate.

  • ARUNA G

    Excellent article Hari ..as a mom of a young non verbal child who is eager to access appropriate education but is often faced with skepticism and disbelief about the underlying potential by well meaning special education staff your words are godsend ..thank you for advocating and hope your articles reach a wide audience

  • Maryrose Porcelli

    Hi Hari! Your article made me cry :( My 12 year old son has autism and is non-verbal. He is in pull-ups and considered “low-functioning”. We’ve tried a lot of things to help him… private school, diets, bio-med, specialists around the country. After spending several thousands of dollars nothing has really helped that much. You are correct, we don’t understand how much he knows because he cannot communicate with us properly. We don’t know if he feels sick, has a headache, or something has happened at school to upset him. It would be amazing if he could type his thoughts on the computer. Congrats to you for being able to do this! You are an inspiration :)

  • Mana

    Hello Hari, thank you for the column. I appreciate that you wrote about many important areas. I have autism. I type slowly. It is hard to communicate all my thoughts. I want to say I would like a cure for autism apart from improvements in communication and understanding.

  • Vino Jothi

    Very informative article for all autistic children and their parents. Thanks.
    .

  • Sarika

    Hari, what an incredibly insightful and eloquently written article! It is a must-read for anyone who knows or interacts with a person with non-verbal autism. I hope UC Berkeley can make it part of their reading curriculum for students in their psychology, education or other departments who wish to eventually work with special needs population. It is so unfortunate that many non-verbal kids are deemed as “low-functioning” or presumed incompetent by people around them. Your article shatters the mold of that assumption and brings a new perspective to light. Keep writing and keep changing the world through your word!

  • excellent articulate column. can’t wait to read more.

  • Padmamala Raju

    Hari, you have expressed your feelings so transparently which even some of verbal people may not be able to do so clearly. I hope your article travels far and wide, waking up people’s mind to do serious research to bring about some positive solution to autism. You have mirrored the thoughts of all autistic some of whom have never got an opportunity to so. Continue this campaign and bring about a better environment for those differently abled .

  • Bindu Menon

    Hari, this article of yours is Brilliant! Hopefully this article will be a wake up call to the several Special Education teachers and administrators who refuse to step out of their comfort zone and accept that communication and expression can exist beyond spoken language and intelligence must not be measured by mere output on demand. Differentiation and being open to different styles of learning and output are the need of the hour.

  • Sivagami Uma Ganesh

    Hari you are so good at communication, not many people can express themselves this clearly. Hats off to you. I do hope innovation catches up to provide not only an easier way for individuals like you to communicate but also an easier way for parents and educators to understand the mind and nurture. Keep communicating.

  • David Teplitz

    You describe what it is like to live in our treasonous bodies perfectly, Hari. I hope that Cal researchers take up your challenge. They have the perfect test subjects in us. I can’t wait to read your future columns!

  • Hridhay Bashyam

    Hi Hari, I am a fellow typer with autism. What a great article! You have explained the challenges of Autism well to a broader audience. Your descriptions of the challenges are spot on. Thanks for advocating on behalf of all of us. One of the assumptions is that if I can type with one person, then I can do so with all. Will you please write a article to educate the audience about how dynamic changes in environment affects our sensory systems and the generalization process takes time ?

  • Pallavi Kuthanur

    Way to go Hari! As a fellow non-verbal single finger-typing autistic, I am so proud of you for being a beacon of inspiration and for this call to action. You might as well have been describing me when you introduced yourself. I can totally relate to your interpretation of signals getting mixed when trying to express emotionally and verbally. While I am still in high school, I hope to follow in your footsteps and make headway into creation of a society that is more inclusive and accepting where I can contribute as much as my NT peer. Looking forward to reading your insightful articles.

  • flashsteve

    Is it just a coincidence that your name is the same as the NPR anchor? My sister is autistic/Asbergers and it is such a challenge dealing with her. Irrational outbursts, total lack of empathy, paranoia, getting lost, and increasing inability to care for herself. I used to get along with her, I thought, but now she tells me that she always thought that I hated her….which is totally not true. I have real doubts that experts/researchers, etc are going to solve this. I say that as a 70-year old person who has dealt with his sibling’s issues for 50+ years. Her symptoms did not begin manifesting until her late teens. I think, and she agrees, that she needs powerful meds, but, unfortunately, doctors will not prescribe them for her condition. btw she has had talk therapy to no avail.

    I think that the best thing that someone like my sister can do is to tell people up-front that she has ‘issues’ and ask for their compassion and understanding. I know this sounds a bit like self-labeling, but how is it different than any other other-abled person (blind, deaf, etc.) that lets people know where they are coming from, so that person can react more appropriately?

    • s randall

      My understand is that people on the autism spectrum don’t begin “manifesting” symptoms in their late teens. Are you sure you have your facts straight?

      • flashsteve

        I hear you. This is a bit of a unique situation. All I know is that when we were growing up, she was totally normal. She had many traumas in her life, but was able to ‘fake it’ because she had a government job, where she did not have to interact with other humans. Perfect situation for an Aspergers sufferer. It is only now, as an older person, that it has become untenable. My bigger point is ‘how should people who present bizarrely given others a heads up?’

        • torako

          maybe she thinks you hate her because you go around on the internet behind her back telling people that she’s irrational and has no empathy. i sure wouldn’t like that.
          but also that sounds more like a mental illness of some sort than autism. mental illness often manifests around teen ages.
          also, 1) just say disabled. stop with the euphemisms. 2) if someone’s gonna be rude about a person being disabled, why does it matter if they know the person’s disabled or not? not knowing someone is disabled doesn’t give them the right to be a jerk.

  • Bhuvana Venkatesh

    Brilliantly written & you are so inspiring Hari! Thanks for sharing your story!

  • Shanthi Kalpat

    Excellent article, Hari! I was particularly impressed by your call for action since I am 100% sure that technology can be invented/implemented/discovered to help people with autism! Keep writing and inspiring people to act!

  • Karen Nielson

    Beautifully written Hari. I look forward to reading your weekly column!

  • Venkata

    Thanks for telling your story. Very inspiring!!

  • Deepa Lakshminarayanan

    Way to go Hari! So proud of you!! Break the barriers!!! Make your voice be heard and help people understand and open their minds to a different way of learning and acceptance and inclusion!!

  • Ranga Rajan

    Outstanding article, Hari!