Leaders Around Me: Autobiographies of Autistics Who Type, Point, and Spell to Communicate

Overview

This collection presents 46 autobiographical narratives from nonspeaking and minimally speaking Autistic individuals (ages 9–62) who communicate through typing, pointing, letterboards, and spelling. These powerful stories document journeys from profound isolation and presumed incompetence to discovering reliable communication access, achieving educational inclusion, and emerging as Self-advocates for systemic change. The book centers the authentic voices of autistic people themselves—revealing how communication access fundamentally reshapes life trajectory, self-perception, and community participation.

Communication Access As Liberation

The Transformative Power of Finding Voice

Gaining access to reliable communication methods—particularly typing, letterboards, RPM, facilitated communication, and iPad-based systems—is consistently described as life-altering and identity-transforming. Contributors who spent years or decades unable to communicate reliably describe the experience as profound isolation, with many comparing it to being trapped or buried alive.

Ido Kedar’s communication at age seven “changed his destiny.” Rishi Jena spent twelve years in silence before discovering the letterboard at age 12, describing it as “freedom from the excruciatingly painful world of silence.” Sue Rubin notes that typing not only allowed her to prove her intelligence but also “organized my disorganized mind—the more I typed, the more organized my brain became. Words no longer floated over my head but became meaningful.”

Alan B. Alexander, who learned to communicate at age 40 using RPM, described his pre-communication life as “missing a puzzle piece with a hole over my throat and a chain around my heart” in “deep darkness” and “silence”—comparable to “a torture chamber with no escape.” Communication “filled my heart, emptied my mind” and allowed him to feel “truly alive” for the first time.

Nico Navarro, “trapped in [his] own mind for 10 long years,” “ran out of the room signing ‘happy’” upon learning to type. These descriptions reflect the actual lived experience of having sophisticated thoughts, emotions, and understanding while being completely unable to communicate externally, resulting in decades of misinterpretation, control by others’ perceptions, and social exclusion.

Communication Methods and Individual Differences

The critical insight from these narratives is that communication access reveals competence that already existed but was invisible. Multiple contributors demonstrate this by earning straight A’s, high grades, or college degrees immediately after gaining communication access—not because they suddenly became intelligent, but because their intelligence could finally be observed and measured. Emma Budway states simply: “Just because I can’t talk doesn’t mean I don’t understand.”

RPM, created by Soma Mukhopadhyay, is repeatedly credited as breakthrough methodology using continuous prompts and a “teach and ask” paradigm. However, the collection emphasizes that different individuals require different approaches—some succeed with letter boards, others with tablets, keyboards, or stencils. The diversity of successful communication methods suggests that the key is access to any reliable communication method, tailored to individual motor and Sensory needs.

Presumed Incompetence and Systemic Underestimation

The Cost of Automatic Assumptions

A near-universal barrier faced by contributors is the automatic assumption that inability to speak reliably indicates intellectual disability. This assumption has cascading consequences: inappropriate curriculum, segregation from general education, institutional placement, aversive interventions, and decades lost to underestimation.

Ido Kedar describes being subjected to 40+ hours weekly of repetitive ABA drills (“Touch your nose!” “Touch table!”) because professionals believed he couldn’t understand language—despite his excellent comprehension. Damon Kirsebom was segregated into an 8th-grade classroom where he was taught “simple addition” and “first-grade reading” despite age-appropriate cognitive abilities. He describes feeling his “life slipping away” in segregation.

Peyton Goddard was institutionalized for years, subjected to aversive interventions and locked in rooms, labeled “severely mentally retarded” and “low-functioning Autistic.” She was traumatized until age 22, when she gained typing communication and typed: “i am intlgent.” Adam J. Morgan, internally “very intelligent, so much that I just do math in my head,” was treated “like a baby” in middle school with “low expectations.”

Nico Navarro describes: “Everyone just assumed that I had an intellectual disability because I was always acting Autistic and I was not able to communicate… I always felt like I was the only person in the world like me who was smart but could not tell anyone.”

Breaking Through Institutional Barriers

The consequence is severe: once professionals or educators form the belief that someone is intellectually disabled, they typically do not re-evaluate despite contradictory evidence. Contributors describe this as a “ceiling” that’s extraordinarily difficult to break through. Even after comprehensive educational assessments prove cognitive capability, skepticism persists. Yet when communication access occurs, the same individuals who were presumed incompetent immediately demonstrate sophistication in writing, Academic work, and reasoning.

The collection repeatedly emphasizes a critical distinction: Motor differences do not indicate cognitive deficits. Sue Rubin had severe apraxia preventing reliable speech, yet she graduated college with honors and a degree in Latin American History. Jeremy Sicile-Kira uses voice output technology and created commissioned art based on synesthetic perception of emotions as colors. Rishi Jena, labeled “extremely cognitively impaired,” eventually took Advanced Placement Calculus and won a statewide writing contest.

Motor Planning, Apraxia, and the Body-Mind Disconnect

Understanding Neuromotor Challenges

A critical distinction made throughout is between motor/Sensory differences and intellectual disability. Many contributors have severe apraxia (difficulty planning and executing intentional movement), sensory processing differences, and movement disorders, but intact or superior cognition.

Adam Wolfond describes his language as “forging like water”—he needs communication partners to help him “assemble the pattern of movement” required to type. His tics and constant movement aren’t “dis-ordered”; they’re how his always-moving body manages space. Peyton Goddard experiences “freezing paralysis of getting stuck or motor madness of repetitive actions I cannot stop.” Kaegan Smith describes his body “acting in opposition to [his] brain,” screaming uncontrollably despite desperately wanting to participate.

Emmanuel Maximilian Bernabe notes that “the smallest disturbance can undo my focus and that is frustrating.” Lukas McAllister emphasizes: “I needed someone I could trust to stay calm too” and “constant reminders to regulate myself.” These are descriptions of genuine neuromotor challenges—not behavioral problems or willful non-compliance, but systematic difficulty translating intention into reliable action.

Supports for Motor Challenges

Supports for motor challenges include: physical touch or presence from a communication partner to help organize movement; practice and repetition to build motor memory and stamina; alternative input methods tailored to individual motor capacity; recognition that motor planning is learnable with proper instruction; and sensory regulation support (breaks, predictability, reduced demand during high-stress periods).

Notably, some contributors report that physical activities—CrossFit, horseback riding, swimming, skiing—helped develop better body control. More importantly, gaining communication itself becomes a tool for regulation. Kaegan notes that once he could spell, he could “spell self-commands” to calm his over-reactive body, and communication with others helped him regulate during stressful situations.

Educational Segregation Vs. Inclusion

The Damage of Segregated Education

Multiple contributors describe being removed from general education and placed in segregated “special” classrooms focused on life skills rather than academics, despite possessing age-appropriate cognitive abilities. Damon Kirsebom felt his “life slipping away” when moved to segregation. Peyton Goddard was deemed “unfit for public schools” and institutionalized. Jordyn Zimmerman spent years in a “stark white room with blue mats” receiving compliance-based tasks (“Touch your nose. Point to the dime”) that infantilized her intelligence.

The Transformative Power of Inclusion

In stark contrast, when these same individuals gained access to age-appropriate curriculum in inclusive settings, they thrived. Rishi Jena transitioned from being labeled “extremely cognitively impaired” to attending middle school with age-appropriate curriculum, math classes, and eventually Advanced Placement Calculus. Emily Faith Grodin became the first nonspeaking student to enroll at Santa Monica College. Sue Rubin explicitly states: “Without having been included in regular education in high school, I never could have attended college.”

Educational inclusion means authentic participation, not mere physical presence. Coby Khodosh describes inclusion as participating in “all aspects of school life, from group projects to presentations, from camping trips to acting on stage.” He wrote and co-directed a screenplay for his school’s showcase.

The benefits of inclusion are documented across multiple dimensions: academic achievement increases, self-perception improves, behavioral challenges often decrease (as cognitive needs are met), and peer relationships develop. Coby argues that “the true beneficiaries of inclusion are his Neurotypical peers,” as relationships with him increase their “care, empathy, and ability to look past an initial judgment.”

Fighting for Educational Rights

Parents and advocates fought extensively for inclusion rights—sometimes through due process hearings or civil rights suits. Rishi Jena’s parents had their lawyer fight for 10 hours in an IEP meeting to secure his right to age-appropriate curriculum. Kayla Takeuchi’s parents had to hire an attorney and ultimately found a charter school that believed in her. John-Carlos Schaut filed a civil rights suit when initially denied credit for a college anthropology class due to questions about the “validity of [his] authorship.”

The Role of Belief and High Expectations

Quality Support and Genuine Belief

A consistent success factor is the presence of people who genuinely believe in the individual’s competence despite outward appearances. Matt Hayes credits his breakthrough to Sheila at Valley Mount Ranch, who said simply, “He can learn to ride, and I want to teach him.” Dillan Barmache had Deb, his communication trainer, whose “tireless confidence” never wavered.

Jeremy Sicile-Kira emphasizes: “My success is due to the many years of learning and trying to understand what the world is made of” and credits “my mom got good people to work with me and professionals that believed in me.” Sue Rubin’s mother became a leader in facilitated communication, gradually reducing physical support as Sue’s independent typing ability developed.

Benjamin McGann states directly: “When my teachers believed in me, I would believe in myself” and conversely “When my teachers did not believe in me, I would act out.”

The Impact of Belief on Outcomes

What quality supporters provide: Presumption of competence; patience during the difficult motor-planning process; age-appropriate academic content, not simplified curriculum; refusal to lower expectations despite behavior or communication challenges; emotional regulation and calm presence; recognition that challenging behavior often reflects unmet needs or communication frustration rather than willful non-compliance.

Critically, when educators or family members doubted competence, behavior challenges increased. When genuine belief was present, independence and achievement followed. Adam J. Morgan’s mother’s turning point came reading Ido Kedar’s book; she apologized for not believing in him fully and promised “from now on she was going to push me and believe in me.”

Behavior As Communication of Unmet Needs

Understanding the Root Causes

A repeated insight across narratives is that challenging behavior often reflects frustration from possessing significantly more understanding than one can communicate, combined with unmet cognitive and sensory needs.

Mikel Falvey shares: “I had a hard time communicating so I was kind of wild with my behavior… It was very frustrating to have more understanding than I was able to communicate.” He was kicked out of high school for hitting others. Emma Budway describes her behaviors as “difficult and interfering. I was loud and unregulated. Sometimes, I hit myself and screamed.” Nico Navarro shares: “I was acting out, getting in trouble, and sad all the time trying to let people know that I was in there in my head ready to come out.”

The Impact of Meeting Communication Needs

Critically, these behaviors decreased or resolved once communication access was provided and cognitive needs were met through age-appropriate curriculum. Mikel’s behavior improved significantly after learning to communicate and being given age-appropriate work. Emma notes that “the more I am able to stay regulated, the broader my world becomes and the more opportunities I have.”

This has profound implications for educational and residential settings: the standard response to challenging behavior (increased restrictions, behavior modification programs, reduced access) is often the opposite of what’s needed. What’s needed is investigation into unmet needs—Is the person bored? Dysregulated? Frustrated at inability to communicate? Experiencing Sensory overwhelm?

Self-Advocacy As Identity Transformation

Finding Voice and Agency

A powerful theme is how gaining voice—through communication access and then active self-advocacy—transforms self-perception from “disabled person receiving services” to “advocate with expertise and agency.”

Tracy Thresher states: “Self-advocacy has changed the way I see myself. It is like looking in the mirror for the first time. I like myself better now.” He moved from anger at his Diagnosis to becoming a Master Trainer in facilitated communication and traveling internationally. Nicholas D’Amora moved from terror about whether people would believe him to delivering speeches at schools, committees, agencies, colleges, and hospitals, eventually founding an adult day habilitation program.

Lisa Vallado explicitly notes: “I am actively involved in advocating for access to higher education for women with disabilities and individuals with Autism,” presenting at conferences and serving on nonprofit boards.

Self-Advocacy As Mental Health Support

Self-advocacy is not presented as an additional responsibility but as a source of identity, purpose, and mental health. As Grant Blasko notes, finding “a community where you feel valuable, even on your worst days, is critically important for mental health.” He emphasizes that “disability doesn’t go away by learning to type,” but having one’s voice heard and believed changes the relationship to one’s disability and sense of agency.

Contributors actively advocate through multiple channels: blogs (Niko Boskovic maintains a monthly column for Oregon Council on Developmental Disabilities; Rohit Dixit blogs about Autism), published memoirs and books (Ido Kedar’s Ido in Autismland and In Two Worlds; Peyton Goddard’s i am intelligent), social media (Damon Kirsebom on Instagram and Facebook sharing typing videos), documentaries (Tracy Thresher and Larry Bissonnette in Wretches & Jabberers; Sue Rubin in Academy Award-nominated Autism is a World), art exhibitions, conference presentations, and YouTube channels.

Educational Barriers and Higher Education Access

Breaking New Ground in Higher Education

Multiple contributors successfully pursued higher education, often as the first nonspeaking Autistic student at their institution. David Teplitz was the first nonspeaking Autistic admitted to UC Berkeley, earning a 3.8 GPA and fundraising over $250,000 for Autism research. Nicolas Joncour became the first French nonspeaking Autistic to pass the Baccalauréat exam and is pursuing a law degree. Lisa Vallado earned an associate degree in Life Science and applied to transfer to a four-year biology program.

However, college access was not automatic or smooth. John-Carlos Schaut applied to Carthage College and was initially pulled from his class by the Director of Learning Accessibility, who “questioned the validity of my authorship” and offered only audit status with no credit. He filed a civil rights suit and eventually enrolled at Regent University Early College Program and later University of the People.

Kayla Takeuchi’s community college initially had no policy for her accommodation needs, gave her inconsistent advising from three different counselors, and created barriers around math requirements—barriers only removed through intensive advocacy. The college subsequently “established a committee with procedures in place to help students like me,” suggesting policy-level change from individual advocacy.

Challenges and Persistence in College

Jordyn Zimmerman described her first year at Ohio University as “lonely and agonizing,” with staff and faculty untrained on how to interact with her and students questioning her right to be on campus. Yet she persisted, formed meaningful relationships through Hillel (Jewish student organization), founded an inclusive collegiate cheerleading team through The Sparkle Effect, and became involved in student leadership.

College represents both significant promise and significant barriers; success requires both institutional commitment and student/family persistence. The narratives also include cautionary notes about burnout—Grant Blasko describes reaching burnout at age 17 from constantly trying to “look less Autistic” and now emphasizes: “I have a responsibility to take care of myself at the same time I am trying to help others.”

Community-Building and Peer Connection

Creating Spaces for Belonging

Multiple authors have actively built or participated in communities of nonspeaking individuals who type or spell—Friendship Circle, Buffalo RPM, Loud Talking Fingers, Sanctuary church. Emma Cladis co-founded Friendship Circle at age 10, described as “a wonderful safe place for typers to come and socialize—something that we Autistic non speakers are not suppose to be interested in doing.”

David Teplitz has participated in “Loud Talking Fingers,” a monthly gathering of typers for 12 years: “it has been wonderful to be able to get to know other people like me.” Grant Blasko emphasizes: “Finding a community where you feel valuable, even on your worst days, is critically important for mental health.” Nicholas D’Amora founded a social group that grew into an adult day habilitation program.

The Power of Peer Mentorship

These communities provide normalized peer relationships, reduced pressure to “look normal,” mutual understanding, and collective advocacy. Rishan Pavan (age 9) describes his turning point: “Before I met my Autism brothers I did not see a point in communicating… Now that I have friends just like me I see why I need my words to be heard. They are teaching me I am important.”

Peer mentorship becomes particularly valuable—experienced typers guide newer communicators in both communication skills and self-advocacy. This creates pipelines of leadership and reduces isolation while building collective capacity for systemic change.

Ongoing Sensory, Motor, and Emotional Regulation Challenges

Communication Access Doesn’t Eliminate All Challenges

While communication access is transformative, contributors are clear that it does not eliminate Autism-related challenges. Lukas McAllister describes needing “calm instruction including clear feedback about strategies that let me control my body to type” and notes “Anxiety paralyzes my dreams.” He struggled with college lectures requiring him to sit still, needed regular breaks, and was embarrassed by his sensitivity to classroom noise.

Kaegan Smith’s body reacts in opposition to his mind: screaming and throwing himself to the floor when meeting an attractive woman, screaming uncontrollably at a baby’s cry on an airplane. Emmanuel Maximilian Bernabe notes that “the smallest disturbance can undo my focus and that is frustrating.”

Grant Blasko emphasizes: “Disability doesn’t go away by learning to type.” He experienced PTSD symptoms from years of communication failure and reached burnout trying to appear less Autistic.

Communication As Tool for Regulation

Interestingly, communication itself becomes a tool for regulation. Kaegan notes that once he could spell, he could “spell self-commands” to calm his over-reactive body, and communication with others helped him regulate during stressful travel. This suggests that the relationship between communication, cognitive self-regulation, and motor control is bidirectional.

Several authors note that physical activities—CrossFit, horseback riding, swimming, skiing—helped develop better body control. More importantly, gaining communication itself becomes a tool for regulation and self-advocacy.

Spiritual Faith and Connection

Faith As Sustaining Force

An unexpected but consistent theme across narratives is the role of religious faith and spirituality. Nicolas Joncour, raised by atheist parents, became deeply interested in the Holocaust at age 10, which led him to Christianity and faith in Christ at age 11. He describes: “Christ helped me to lead my life through obstacles” and “Faith is my hammer against the obstacles of life.”

Isaiah cites Romans 6:22 as his source of hope during years of silence: “My hope was always in heaven, walking around, I will worship God by singing and speaking.” He was baptized at Christmas and notes: “My church family has always supported me.”

Faith Communities and Service

Lukas McAllister’s “Luke’s Packet Ministry,” inspired by the Good Samaritan story, distributes hundreds of packets annually to unhoused individuals, earning him the 2019 Grand Marshall role for the Autism Society of Ventura County. John-Carlos Schaut co-created “Sanctuary,” an interdenominational church for people who type and spell.

Emma Cladis dedicates her website hopeneverending.com to hope and faith, stating: “I really want to say, that all of this is only possible because God is with me.” Isaiah notes that God was “the only one to know my thoughts” during years of silence, suggesting that spirituality provided meaning-making and connection when human communication was unavailable.

Intersectional Identities and Compounded Marginalization

Recognizing Multiple Layers of Marginalization

Several narratives explicitly address intersectional experiences, though this dimension could be more extensively developed. Lisa Vallado cites UNESCO data: “Women with disabilities are often less likely to reap the benefits of a formal education than disabled men—marginalized not only by their disability but also by their gender.”

Justice Killebrew, a 13-year-old African American Autistic, became “the 1st African American special needs artist in the history of Glendale Unified School District to ever make it to state” in a poetry contest and was interviewed by the LA Times.

The Need for Intersectional Advocacy

While the collection centers Autism and nonspeaking communication, several authors explicitly name gender and racial dimensions of their marginalization, suggesting that these intersectional barriers require specific attention and advocacy. This hints at additional systemic barriers beyond Autism-specific ones and suggests that advocacy work must attend to race, gender, sexuality, and other intersecting identities alongside disability advocacy.

Reframing Autism from Deficit to Difference

Embracing Neurodiversity

Several contributors explicitly reframe Autism from deficit model to Neurodiversity perspective. Niko Boskovic states: “I wouldn’t change or give up any portion of my Autism for any reason… I am so glad to have it! It has made my life so interesting and rich in experience… Having Autism is just another way of looking at the world.”

Adam J. Morgan declares: “Others see Autism as a death sentence, but it’s not. It’s a gift, a superpower. My reality is very different than what others perceive of me; I am smart and just learn and communicate differently.”

Balanced Perspective on Challenge and Difference

However, contributors don’t minimize genuine challenges. They acknowledge that motor difficulties are real and require ongoing work. Damon Kirsebom emphasizes: “The process of learning to motor plan for communication is hard work and requires skilled instruction. Only fools and ideologues believe otherwise.”

The collection models a balanced perspective: celebrating Neurodiversity and difference while acknowledging real challenges that require Support and accommodation.

Creative Expression and Hidden Gifts

Artistic and Creative Accomplishments

Several contributors are accomplished artists, writers, and performers, suggesting that Autistic cognition may have particular strengths in creative and analytical domains. Jeremy Sicile-Kira experiences synesthesia—seeing people’s emotions as colors—which he channels into vibrant portrait paintings. His commissioned work involves meeting clients and then dreaming about the colors he perceived, later painting from those dreams.

Sameer Dahar weaves scientific concepts into poetry; his poems have been transposed into opera performances. Adam Wolfond is a poet and filmmaker exploring Neurodiversity through art. Emily Faith Grodin expresses herself through poetry, dance, and theater. Larry Bissonnette is a critically acclaimed visual artist who participated in the documentary Wretches & Jabberers.

Tito Mukhopadhyay’s Philosophical Contributions

Tito Mukhopadhyay philosophizes through metaphorical language about keys and locks, darkness and light, and the necessity of stories for meaning-making. His writing style is distinctly poetic and complex. He published six books including How Can I Talk if my Lips Don’t Move? and The Mind Tree, emphasizing that stories—not external labels—give life meaning: “Without stories, keys of my life are non-functional… We are stories that we live.”

Emma Cladis is studying communications and film screenwriting with plans to “produce documentaries about our typing community.” Justice Killebrew’s poetry reached state level in a statewide writing contest.