Noah’s Voice: Non-Speaking Man Advocates for Big Changes

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.

Noah’s Voice: Non-Speaking Man Advocates for Big Changes https://www.autismparentingmagazine.com/noah-voice-man-advocates-changes/

 

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.

Blog: thisismenoahmc.blogspot.com/

This article was featured in Issue 88 – Knowledge is Power

Stephanie C. Holmes

Rev. Stephanie C. Holmes, MA, BCCC, is a professional counselor, ordained minister, certified autism specialist, and doctoral candidate, but her real credentials come from being the mother to an amazing adult daughter who is on the autism spectrum. Stephanie’s career focus changed when her eldest daughter was diagnosed with Asperger's syndrome in 2004. Her book, Confessions of a Christian Counselor: How Infertility and Autism Grew my Faith, was released fall of 2015. Stephanie also contributed to The Struggle is Real: Mental Health in the Church (2017) by writing the chapter on how churches can better serve families with members on the autism spectrum. For more information visit counselorstephanieholmes.com

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Ralf Schlosser - June 3, 2019 Reply

Although not explicitly mentioned, we infer that Noah may have used the Rapid Prompting Method. While it is not our intent to diminish Noah’s lived experience, we would like for the readership of Autism Parent Magazine to be aware of a recent systematic review on this topic which concluded as follows:
“This systematic review was deemed empty and revealed no evidence in relation to RPM’s effectiveness meeting our inclusion criteria. The developers of RPM and its proponents have yet to fulfill the crucial burden of proof requirement demanded for novel interventions. Although lack of evidence does not necessarily demonstrate a lack of effect, until future trials have demonstrated safety and effectiveness, and perhaps more importantly, have first clarified the authorship question, we strongly discourage clinicians, educators, and parents of children with ASD from using RPM” (p. 8).
Schlosser, R. W., Hemsley, B., Shane, H. C., Todd, J., Lang, R., Trembath, D., Mostert, M., Fong, S., & Odom, S. (2019). Rapid Prompting Method and Autism Spectrum Disorder: Systematic review exposes lack of evidence. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-019-00175-w free to download till July 15th, 2019.

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Stephanie C Holmes - June 3, 2019 Reply

Thank you for your comments Dr. Schossler and I respect your concerns. Having seen Noah improve over a year and a half period I can validate that by watching him in this process of communication the words and thoughts were his own. In your reply, you quoted, “Although lack of evidence does not necessarily demonstrate a lack of effect,” and I want to stop there. While assisted communication such as RPM or letterboard may not yet meet criteria for evidence-based, I have seen this young man’s life change and outlook brighten in having a form of communication to not only express his needs and wants but to express his thoughts and converse about things he has learned. Noah and his family knew there would be negative feedback about or disbelief about his ability to communicate but chose to be interviewed for the article because Noah is passionate about advocacy and for professionals, educators, counselors, and parents to presume competency in non-speaking individuals. There is minimum risk in this approach for parents and persons on the autism spectrum and maximum reward if the form of communication opens up a communication channel between a child and their parent and a person to the rest of the world. Noah said to parents that this is worth the effort and he believes every person on the spectrum deserves a chance of having a voice. Thank you for comments.

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David Mentesana - June 7, 2019 Reply

I have known the Sebacks for many years. I can tell you the use of the letter board is nothing short of a miracle. I have personally communicated with Noah via his parents / communication partners and even played games with him. Noah is a very inspiring young man, highly intelligent, and has a great sense of humor. This is evident when you get to know him and talk to him via the board. Thanks Noah for speaking out. We hear you and look forward to hearing from other non-verbals soon.

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    Edna - June 18, 2019 Reply

    Hi David! Thank you for your comment. Yes, we are doing our best to give other people on the spectrum the chance to speak out and have their stories be known. For now, we encourage you to check other real life stories featured on our page here: https://www.autismparentingmagazine.com/autism-article/
    Enjoy reading David!

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Stephanie - June 8, 2019 Reply

Ralf,
I personally have the pleasure of knowing Noah and have witnessed him communicate on his letterboard. He is brilliant and passionate about expressing himself. Two years ago, not know he was listening to a conversation I was having with his father about my son’s initial start with RPM, He immediately wanted to get in the conversation on his board. He told me to trust my son and that he has so much to share with me. He then went on to tell me that I needed to start communicating with him and to presume competence! He pretty much told me off that I need to be there for my son! He is a very wise young man. After two years of my son learning to spell on the board, and yes with prompting, he is now independently able to spell and communicate in paragraphs. Our life has changed. We have learned our son is smart, passionate, witty, and opinionated. I’m quite sure if I read your comment to him, you would be insulted by him, probably called shallow and narrow minded, even some other words I can’t even spell!
I’m not sure how smart of a man you are, but I bet Noah and my son could challenge you and beat you in a spell competition! Two years ago I would never have believed what I’m writing. Noah and my son have proven me wrong, teachers wrong, and anyone else who has known him. Family and friends who have witnessed him communicate are in shock, BUT not disbelief. They are thrilled he has a voice! Teaching requires prompting! That’s how people learn! Be a little bit open minded Ralf!

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Katie Golloher - June 8, 2019 Reply

Noah, Nadine, and David – you have changed our family’s life forever. Knowing Noah personally since he was a young boy and watching him communicate to me now as a young man I can testify as to the evidence of Noah’s authentic voice. I was like any parent of a severe non-verbal autistic adult who had spent two decades finding no help and no hope with clinicians or educators. And then one fateful spring day one year ago we ran into Noah and everything changed. Noah answered every question I had and even some obtuse questions from my skeptical teenagers. I watched as Noah pointed to each letter and answered our questions. I remember wondering what word he was going to spell that began with z – ZILLION. “Don’t let the fact that you’ve tried a zillion interventions over the years that haven’t worked make you gun shy. This is the real deal. Houston (my son) needs a voice. He needs the same chance to be known that everyone else gets effortlessly.” – Noah Seback
These and the many other words of Noah that I watched him spell personally gave me the faith to fight for my son’s voice and our lives are radically changed forever. My nonverbal autistic son just enrolled in college.
To Dr. Schlosser, I do believe it is inappropriate to quote yourself as evidence for disproving a method of communication and trying to silence and discredit someone whom you have never met. I would like to invite you for an on camera interview with my severely autistic son so we can provide “clinicians, educators, and parents of children with ASD” some evidence based criteria to decide if this is legitimate communication for themselves.
As for Noah Seback – he’s a legitimate hero and advocate for nonverbal autistics and my family is forever grateful for his voice and his courage.

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