Nadine and David Seback are the parents of an amazing 20-year-old young man on the autism spectrum named Noah. He is nonverbal but has learned along with his parents to point to letters on a letter board to communicate, so he now is a strong advocate for nonverbal individuals on the spectrum.
I met the Seback family two years ago when Noah was first learning how to use the letter board to communicate. Watching Noah now share his thoughts and opinions and advocating is inspirational. In my office, I interviewed Noah while his mother, as his communication partner, held the letter board and wrote down the letters Noah was spelling out. His movements are not always precise because he struggles with motor planning deficits; thus he requires some motor coaching and has not yet progressed to independent typing. Noah is passionate about advocacy for inclusion and equal communication rights for nonverbal persons on the spectrum.
Today, Noah and his parents want to share the disappointments, frustrations, challenges, and triumphs he has experienced through his educational history and as he inspires other families to seek out communication techniques (such as pointing to spell on a letter board) to help connect nonverbal-speaking persons through communication to the greater community.
An exclusive interview with Noah Seback and his parents, David and Nadine
Stephanie: When did you first suspect Noah was possibly on the autism spectrum?
Nadine: His development was typical, meeting developmental milestones up until about 13 months of age. We were new parents, and we didn’t have other friends with kids, so naively we attributed Noah’s lack of speech to the fact that boys sometimes start talking later than girls. Then we came to realize something was not quite right.
Stephanie: What was it like wanting to communicate with and know your child’s thoughts or ideas on things but not being able to?
David: In our world, we tend to take the importance of communicating for granted unless there’s a problem in that area, that we don’t realize how essential communication is to life, community, connection, and relationships.
Noah passionately pointed to the letters during the interview, which can be exhausting, to answer the questions.
Stephanie: Noah, what was school like for you without a way to communicate and not being intellectually engaged?
Noah: It was a waste of time, and that’s an understatement! It was babysitting, warehousing, and public kindergarten year after year after year. I was longing to learn, to be intellectually stimulated and challenged.
Noah then paused and asked his mom to explain feeding the brain. His mother explained that if the public school system cannot engage students who are nonverbal-speaking, they can at least engage the brain and give grade level material. Noah again voiced his opinion through the letter board, spelling out “presuming competence.”
Stephanie: What were Noah’s academics like from preschool on through 11th grade?
Nadine: He was unchallenged, bored, frustrated, and demeaned, in our opinion. While Noah’s SPEECH is impaired his LANGUAGE [what he understands] is not.
Noah said he wanted to add his thoughts about how educators and others view the behaviors of those on the autism spectrum.
Noah: If you were treated as “retarded” [Noah chose this word because this is how society makes him feel] 24/7 you would get bored, anxious, and angry. When I am intellectually engaged and challenged it helps me to not have what people call “behaviors.” The word behavior implies intention, when it is actually a fight-or-flight response to repeated, consistent underestimation of my abilities. My body control can be sketchy at best without the proper supports in place. The other key element, again, is presuming competence.
While Noah continued his thoughts, he verbally spoke the words “competence” and “key element” repeatedly.
Noah: Don’t speak to me like I am three or an animal, or talk over me, past me or about me right in front of me. Get past my exterior and believe the real me is stuck inside.
Noah and his parents advocated for the use of his communication method for his high school Individualized Education Program (IEP). One teacher believed in it and was becoming trained to allow Noah to use the letter board for academics, but when she transferred schools, training a new teacher was not embraced and the school found so-called research that said the methodology is pseudo-science and not evidence-based, so they refused to allow the training and admission of it in the IEP. Noah and his family decided to go another route. Noah was not interested in a special education diploma; he wanted a high school equivalency, to sit for the GED. Noah took a pre-test, participated in GED prep classes, and was deemed GED test ready! But Noah and the group of non-speaking students who hoped to be the first group of non-speaking students to take the GED were declined accommodations for the GED.
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Stephanie: How did you feel, Noah, about not being able to take the GED? What is your goal or path now?
Noah: My dream is writing, presenting, and advocating for educating others. Not having a diploma won’t stop me, but I, like everyone else, deserve the chance to have objective measures to prove my intelligence and be allowed to pursue higher education if I so choose.
Stephanie: How do you feel when people judge you because you do not speak?
Noah: It enrages and disappoints me [and out loud said, “disappoints me”]. People are small-minded and can’t open themselves to the possibility of neurodiversity. My brain processing, my autism if you will, is magnificent. My brain controlling my motor movement or my body, not so much.
Stephanie: As a family, what are the thoughts you want to leave the readers about the importance of assistive and augmentative communication devices such as the letter board for non-speaking persons on the spectrum?
David and Nadine: We encourage the readers to have an open mind and heart as they consider the importance of having a voice. Your child has been locked in a silent prison long enough. As you explore and participate in this methodology, respect the process and progression. It is systematic for a reason from an emerging motor skill standpoint and from an emotional standpoint.
Don’t expect deep, meaningful conversations with your child in the beginning. It will take time, practice, consistency, commitment, but it’s worth it. And it’s imperative to learn from a trained, seasoned communication partner.
Noah: Everyone deserves a voice, even non-speaking individuals. I’m not looking for special treatment, just equal treatment.
Noah added he wants educators and the community to understand the importance of having a voice and its importance to connecting people. He wants people to consider how individuals who are different are treated, and not to judge people by their outside behaviors. He said he feels insulted that this form of communication is not considered real and that it insults the intelligence of those who are non-speaking who want what others want which is to express thoughts, feelings, and ideas and to be able to contribute to society in some way.
Noah: I want to speak to the fact that these words are coming from me—this communication is REAL. It has changed my trajectory, my future, and my life! My family’s too.
Noah Seback is a 20-year-old individual who happens to be a nonspeaking autistic. This is only part of his identity, but a defining one. Since learning to point to letters on a letter board to communicate he now has a voice which seeks to change the definition of that label. Noah resides in Atlanta, Georgia with his parents David and Nadine.
This article was featured in Issue 88 – Knowledge is Power