LIFE-LONG SUPPORTS TO LIVE INDEPENDENTLY WHEN THERE ARE SPECIAL NEEDS

Let Nonspeakers “Speak” into Their Own Lives

By Noah Seback

As humans, we all want to speak into our own lives, to make choices and plans, to influence the direction our lives take. How can a person speak into their own life if they are unable to speak? If you happen to be a nonspeaking autistic like me, that’s a great question. I “speak” by pointing to letters on a letterboard or keyboard with the support of a communication partner. In this way, I am able to spell out my thoughts and ideas. My voice can be heard, if not spoken.

Nonspeaking autistics have a disconnect between what the brain tells the body to do and what the body actually does. When our brains tell us to speak, our mouths can’t execute the movement properly. We can’t output the inner knowledge we have. Unfortunately, this is often misinterpreted as an intellectual deficiency. Nonspeaking, however, does NOT mean non-thinking. Once my body was trained to effectively point to letters on a letterboard to spell, I was able to output what was trapped inside my brain and body.

World: Meet Noah Seback, age 16. Since that time five years ago, my life has been transformed.

Once perpetually taught on a kindergarten level, I am now embarking on a path of my own choosing: advocacy for other nonspeakers. Because of being misunderstood by the public school system, I was on track to a very different future. After gaining my voice, I considered earning a high school diploma. I explored getting my GED. I weighed attending college. I actually had options from which I could choose. ME, I could choose, not parents or educators or therapists or specialists.

Once labeled a disruptive “behavior problem” because my body responds negatively to stress, I can now explain the fight or flight response that overrides my body’s ability to control its actions. I can partner with appropriate professionals to implement effective strategies when my body overreacts to emotional triggers. I am now able to explore my anxieties and emotional scars appropriately.

Though it was once impossible for anyone to know the real me, I now have deep and lasting friendships. People can look beyond what they see of me on the outside (often weird movements and sounds) to what I reveal of myself through my spelling. Sharing myself through communication allows me to connect on a rich personal level previously unavailable.

So, what has all this meant to those closest to me? Try to imagine, as a parent, having your 16-year-old communicate to you for the first time: a game changer! No longer was I a mystery to my parents. Instead of consulting experts, they could consult the true expert on Noah Seback, autistic nonspeaker: me. Together we could combine forces to build a more fulfilling life for me. After all, this had been their goal all along. Now we could better target my specific profile and the support needed to achieve that goal. I could give input and feedback to eliminate their guessing and assumptions. I could help set priorities and participate in decision making regarding every facet of my life. I could express a lifetime of pent-up emotions, opinions, and ideas. My parents could now have meaningful interactions with me.

I want to appeal to anyone who knows an autistic individual who doesn’t speak or speaks minimally or unreliably. I urge you, believe that nonspeaker is in there. Presume competence despite their outward presentation. Don’t judge a book by its cover. Speak to and treat them respectfully and age-appropriately. If they don’t spell on a letterboard or keyboard, encourage and support them to explore doing so. Moms and Dads, isn’t it your dream to unleash their voice? Isn’t it your dream to unlock their potential? Chances are they share those same dreams. Don’t be deterred by naysayers or previous interventions that have dashed your hopes again and again. Nonspeakers long for and deserve their own voice. Freedom, agency, and autonomy await.

Noah Seback is a nonspeaking autistic who has gained the ability to communicate effectively through spelling on a letterboard or keyboard with the support of a communication regulation partner. He is a rising self-advocate who is passionate about promoting communication rights for fellow autistics who don’t speak or speak minimally or unreliably. His lived experience of 16 years as a nonspeaker without a voice has provided him with the ultimate training and expertise.

Website: thisismenoah.com