Skip to content

Ellen Matsuda and Cody Matsuda

Ellen Matsuda and Cody Matsuda are mother and son. Their relationship changed after Cody’s 1995 suicide attempt, his acquired speech disability, and Ellen’s recognition that her professional expertise had not protected him from medical dismissal. They rebuilt communication through ASL and AAC and later worked together in disability advocacy, while Cody also challenged the ways Ellen’s protection had limited his autonomy.

Overview

From about 1993 to 1995, clinicians repeatedly dismissed Cody’s disabling fatigue as “just depression” or another ordinary adolescent problem. He received fluoxetine for real depression roughly two months before his attempt, but the treatment did not address his underlying ME/CFS, which remained without formal recognition for years. In spring 1995, sixteen-year-old Cody told psychiatrist Dr. Sato, “I don’t want to wake up tomorrow.” Dr. Sato dismissed the statement as “typical teenage melodrama” and did not arrange an emergency evaluation. Ellen, whose work challenged medical dismissal, relied on that assessment and took Cody home.

That evening, Cody overdosed on his prescribed fluoxetine. Ellen found him at approximately 7:00–7:30 p.m. and called 911. He survived a seizure and cardiac arrest, required ventilation, and sustained anoxic brain injury that caused acquired motor apraxia of speech. Ellen spent four days in the ICU with him and carried lasting guilt that, despite nearly two decades of advocacy for other disabled children and adults, she had trusted the physician’s dismissal of her son’s danger.

On the Friday after Cody woke, Ellen sat beside his hospital bed and cried quietly while he slept and snored without ventilation. Before falling asleep, he had mouthed “Can I sleep?” because he feared that sleeping would be mistaken for another attempt to die. Ellen assured him that he could always sleep without asking permission. That night she decided the whole family would learn ASL and seek AAC immediately, without treating either as a last resort after months of unsuccessful speech therapy. She understood communication access as Cody’s right.

Ellen learned alongside Cody as he rebuilt communication and education. She wrote “How I Failed My Nonspeaking Son: A Mother’s Confession” in 1996 with his consent and collaboration, examining her own failures as well as the medical system’s. Their later co-authored publications became part of an adult professional partnership informed by his lived experience and her academic expertise.

Origins

Cody was born on February 15, 1979, Ellen’s second child after Susie (born 1977) and before Pattie (born 1982) and Joey (born 1987). Ellen was in her late twenties and balancing disability-services oversight work with raising young children. Cody resembled Greg so closely that people commented on it. His early curiosity, high intelligence, and intense interests coexisted with autistic traits that went undiagnosed during childhood, when twice-exceptional children were often missed.

Ellen recognized Cody’s intellectual ability and traits that resembled Greg’s. His giftedness and extensive masking helped obscure his autism until young adulthood. He was curious, gentle, and literally trusting in ways that left him socially vulnerable.

Ellen’s work also stretched her time and attention. During demanding periods she stayed until nine or ten at night writing grants and resident case documentation. When Greg called to ask whether she had eaten dinner, she sometimes said yes when she had not. Her advocacy for residents could take time away from her children. Susie described Greg as “distant” during their childhood, when his autistic overwhelm sometimes led him to withdraw and she took on care for younger siblings.

Around 1993, when Cody was fourteen and a high-school freshman, disabling fatigue developed after an illness. He struggled through school days and crashed for hours afterward. Ellen and Greg sought medical explanations, but clinicians attributed the symptoms to “just depression,” “teenage angst,” insufficient exercise, or stress.

Ellen knew the pattern from institutional cases in which disabled adults’ symptoms were dismissed as “attention-seeking” or “behavioral problems.” She believed Cody’s illness was real and continued pressing for tests and explanations, but her professional knowledge and contacts did not secure an accurate diagnosis for him.

By spring 1995, Cody had lived with symptoms later understood as ME/CFS for about two years. The sixteen-year-old Pasadena High School sophomore fell asleep in class, dreaded school days, and often spent hours recovering at home. Depression had developed alongside his physical illness and repeated dismissal; it required care in its own right but did not explain away the fatigue.

Dynamics and Communication

Before Cody’s 1995 attempt, Ellen challenged doctors’ dismissals and sought tests and evaluations for him. Her protectiveness coexisted with demanding work that often kept her away from home into the evening.

Cody was gentle and rarely confrontational. Unlike Pattie, whose emotional dysregulation could make her distress immediately visible, he often spoke quietly and precisely, with the formality Ellen recognized in Greg. He told her he was tired, could not get through school days, and knew something was wrong. Ellen believed him, but could not make clinicians treat those reports as evidence of physical illness.

At a psychiatry appointment in spring 1995, Cody told Dr. Sato, “I don’t want to wake up tomorrow.” Dr. Sato dismissed the suicidal statement as “typical teenage melodrama” and did not arrange an emergency evaluation. Ellen trusted that assessment and took Cody home. He overdosed on his prescribed fluoxetine that evening.

Ellen found Cody at approximately 7:00–7:30 p.m. and called 911. At County General, she spent four days in the ICU as staff treated his seizure and cardiac arrest and machines supported his breathing. She understood the emergency in the context of the illness and suicidal distress that clinicians had minimized.

Cody survived with anoxic brain injury and acquired motor apraxia of speech. His intelligence and language comprehension remained intact, but he could not reliably plan and coordinate the movements required for intelligible speech. He woke unable to speak as he had before.

On the Friday after Cody woke, Ellen sat by his bed, cried quietly, and listened to him snore without a ventilator. Clinical terms for his injury did not lessen her fear or grief. Earlier, he had mouthed “Can I sleep?” because he feared sleep would be mistaken for another suicide attempt. Ellen told him, “Of course you can sleep. You can always sleep. You don’t have to ask permission for that.”

That Friday night, Ellen decided the whole family would learn ASL. She pursued AAC alongside it instead of waiting through months of speech therapy to establish that his speech loss was permanent. Her professional commitment to immediate communication access became a direct obligation to Cody.

Ellen learned ASL with Cody, Greg, Susie, Pattie, and Joey. Their communication also included typing, AAC output, and Cody’s expressive face and body, including stomps, claps, and emphatic gestures. Ellen adapted her direct style to those forms rather than treating speech as the only full language available to him.

Ellen and Greg worked with Sarah and Marcus Davis to establish the Matsuda-Davis Homeschool Cooperative in fall 1995. They withdrew Cody from traditional school and built rest, flexible pacing, ASL, AAC, and the option to work lying down into his education. Ellen taught history, social studies, and disability rights. The cooperative ran through spring 1997, giving Cody room to demonstrate intellectual abilities that attendance-based schooling had obscured.

Their later writing and presentations addressed disability rights, autism, nonspeaking communication, and family systems. Ellen’s 1996 essay “How I Failed My Nonspeaking Son: A Mother’s Confession,” written with Cody’s consent and collaboration, preceded their equal adult professional partnership. In it she examined medical dismissal alongside her own assumptions and control after he became nonspeaking.

Family and Cultural Context

Ellen and Cody’s relationship was transformed by the medical system’s failure to take a mixed-race disabled adolescent’s invisible illness and suicidal distress seriously. Ellen’s professional expertise did not prevent the failure, and her guilt after Cody’s near-death became central to both their private relationship and their later public work.

Cody grew up in Pasadena with a White mother and a Japanese American father, in a household where disability advocacy and differing neurological needs were familiar. The Moore family’s wealth, Ellen’s social-work doctorate, and her professional contacts gave them resources many families lacked. Those advantages did not secure recognition of Cody’s ME/CFS or a safe response to his suicidal statement. Clinicians repeatedly read his exhaustion as depression, insufficient effort, or stress, and Dr. Sato dismissed “I don’t want to wake up tomorrow” as “typical teenage melodrama.” The case exposed both a specific physician’s failure and wider patterns of minimizing adolescent chronic illness and distress.

As a quiet, studious, mixed-race boy with an illness that was not readily visible, Cody was repeatedly treated as someone who needed to try harder rather than as someone in crisis. His experience brought race, disability, and adolescence into the family’s understanding of whose symptoms received prompt attention, without identifying a particular clinician’s racial reasoning.

Greg’s Japanese American family history included relatives incarcerated during World War II and a postwar expectation of achievement and restraint. Those expectations had helped obscure his own autistic support needs. Cody inherited that history as well as Ellen’s White progressive family tradition, and his later writing placed Japanese American and mixed-race experience within accounts of chronic illness, autism, and nonspeaking communication.

Ellen’s guilt was professional as well as maternal. As a White advocate whose credentials and Moore family connections often gave her institutional access, she had spent nearly two decades documenting how professionals dismissed disabled people’s suffering. Yet she relied on Dr. Sato’s authority when Cody stated that he did not want to wake up. She later understood that an emergency evaluation should have followed. The gap between what she knew in her work and what she did as a frightened parent became part of her public accountability.

Ellen’s Friday-night ASL decision drew on the Moore family’s long practice of securing support without requiring disabled relatives to prove they deserved it. Her parents had kept Heather at home and arranged care when professionals urged institutionalization. Ellen applied that commitment to Cody by pursuing communication access immediately, while later acknowledging that access did not excuse the control she sometimes exercised over him.

The entire family learned ASL after Cody became nonspeaking. Because the household already accommodated different neurological and communication needs, ASL joined spoken language and AAC as part of ordinary family communication.

Cody’s later autism diagnosis gave the family language for traits previously understood through giftedness, temperament, and the household’s neurodivergent baseline. Greg’s own autism had gone unrecognized for decades, while Cody’s giftedness and masking delayed recognition. Ellen wrote her early personal essays with Cody’s consent and collaboration; their later shared writing placed his expertise as a mixed-race nonspeaking autistic adult alongside hers rather than treating him as only her subject.

Shared History and Milestones

Cody’s Birth: February 15, 1979

Cody was Ellen’s second child. She was in her late twenties and establishing her disability-services oversight career. His early curiosity and ability to engage complex ideas became part of how she knew him as he grew.

Onset of Fatigue: Around 1993

At about fourteen, during his freshman year, Cody developed persistent fatigue after a bad flu. Ellen and Greg sought medical explanations, but clinicians attributed his symptoms to “just depression,” “teenage angst,” or a need for more exercise. Ellen challenged those dismissals without being able to secure a diagnosis.

Medical Dismissal: 1993–1995

For about two years, Cody lived with symptoms of ME/CFS without an accurate diagnosis. Fluoxetine was prescribed for his depression approximately two months before the attempt, but clinicians continued to treat depression as an explanation for all his physical symptoms. Ellen saw him sleep in class and collapse at home for hours, pressed for tests, and watched his depression worsen alongside the untreated illness. Her advocacy did not prevent the dismissals.

Psychiatry Appointment and Attempt: Spring 1995

At the psychiatry appointment, Cody told Dr. Sato, “I don’t want to wake up tomorrow.” Dr. Sato dismissed the statement as “typical teenage melodrama” without arranging an emergency psychiatric evaluation. Ellen relied on that assessment and took Cody home.

That evening, Cody overdosed on his prescribed fluoxetine. Ellen found him around 7:00–7:30 p.m., called 911, and rode with him to County General.

Four Days in the ICU

Ellen spent four days beside Cody in the ICU as medical staff treated the seizure, cardiac arrest, and their effects. During his neurological checks, staff observed and documented the longstanding fatigue that earlier clinicians had dismissed. Ellen felt relief that someone finally believed Cody, but the recognition came after a life-threatening attempt.

Cody survived with anoxic brain injury and acquired motor apraxia of speech. He woke unable to coordinate intelligible speech, while retaining his intelligence and language comprehension.

Friday Hospital Vigil and ASL Decision

On Friday night after Cody woke, Ellen listened to him snore without ventilation and cried beside his bed. He had earlier mouthed “Can I sleep?” and accepted her assurance that he never had to ask permission to rest. His fear that sleep might be mistaken for another attempt made the exchange especially painful for her.

Ellen decided that night that the whole family would learn ASL. She also pursued AAC rather than waiting for speech recovery before giving Cody ways to communicate. The decision turned her professional principle of immediate access into a concrete family practice.

Saturday Conversation with the Siblings

The next morning, Ellen gathered Susie, Pattie, and Joey in the living room and explained that Cody had attempted suicide and was alive but could no longer speak as before. Seven-year-old Joey asked, “What does that mean? Suicide?” Ellen answered her children while managing Pattie’s anger, noticing Susie’s move toward a caretaker role, and carrying her own guilt.

Matsuda-Davis Homeschool Cooperative: Fall 1995–Spring 1997

Ellen, Greg, Sarah, and Marcus Davis established the cooperative after Cody and Andy left traditional school. Ellen taught history, social studies, and disability rights. Rest, ASL, AAC, flexible pacing, and work done lying down when necessary were built into the schedule instead of treated as exceptions.

Cody wrote college-level history essays, and he and Andy pushed each other’s discussions toward graduate-level complexity. Ellen saw that removing attendance and communication barriers let them demonstrate abilities that their former schools had obscured.

California High School Proficiency Exam: Spring 1997

At eighteen, Cody took the CHSPE with typing and AAC accommodations and scored highly. Ellen and Greg already knew his intellectual ability; the result documented what he could demonstrate when communication and bodily access were provided.

Cody’s Autism Diagnosis: Ages Twenty to Twenty-Two

Cody’s diagnosis gave Ellen a framework for the literal trust, need for routine, high intelligence, and social vulnerability she had seen throughout his childhood. Her professional familiarity with autism did not make the recognition of her own son’s neurology insignificant.

Public Accountability and Adult Collaboration: 1996 Onward

Main article: Ellen Matsuda (Career and Legacy)

Ellen’s “What We Get Wrong About Nonspeaking Young People: A Mother’s Perspective” appeared in 1995–1996 with Cody’s consent and collaboration. Approximately six months later, “How I Failed My Nonspeaking Son: A Mother’s Confession” (1996) examined her internalized ableism, pressure around recovery, grief over his spoken voice, and tendency to speak for him. Her accountability extended beyond trusting Dr. Sato: despite advocating for communication rights professionally, she had also treated Cody as less capable after he became nonspeaking.

Adult collaboration followed that earlier reckoning. Cody joined Greg and Ellen in “Two Generations of Autism: A Father and Son’s Experience” (2002–2003), contributed to work on chronic illness and communication, and co-presented on parental boundaries and disabled autonomy. In the mid-2010s, his own memoir, ‘’Voices Beyond Speech’‘, included “My Mother the Dragon,” examining the contradictions in Ellen’s protection from his perspective. His right to criticize her remained part of their relationship, not a failure of reconciliation.

Public and Private Relationship

Before spring 1995, others knew Ellen as a disability advocate trying to obtain care for her gifted son. She attended appointments, challenged dismissive explanations, and requested tests. Cody’s formal speech and strong academic work could obscure how seriously fatigue affected his school attendance and daily life.

After Cody became nonspeaking, strangers sometimes saw his AAC device and assumed he could not understand or decide for himself. Ellen challenged that presumption, using the same resolve that had earned her the professional nickname “the Dragon.” Her insistence that he was intellectually capable also had to make room for his right to speak for himself and make decisions without her control.

The attempt complicated Ellen’s professional reputation and her own understanding of it. Colleagues knew that an investigator of institutional abuse had relied on a doctor’s dismissal of her son’s suicidal statement. The experience exposed limits of expertise when a parent also depends on clinicians to recognize immediate danger.

Privately, Ellen continued to grieve her decision to bring Cody home from Dr. Sato’s appointment. Her work on behalf of other disabled people did not shield her from the guilt of having trusted the dismissal that preceded his attempt.

The relationship’s repair took place in everyday practices: Ellen’s hospital vigil, the family’s ASL lessons, and her history teaching while Cody typed sophisticated analysis at the cooperative. She learned the meanings of his stomps, claps, gestures, and expressions without mistaking the loss of spoken speech for lost intelligence.

Ellen’s 1996 essay and later publications and presentations with adult Cody brought parts of that private history into public advocacy. She used her own mistakes as material for professional accountability, while Cody retained his independent perspective and authority to criticize her account.

Emotional Experience and Repair

Ellen loved Cody and believed his illness before the attempt. He was her gentle, intellectually curious second child, and she pressed clinicians for an explanation of his exhaustion. Her late work hours and the medical system’s repeated dismissal remained part of her account of what she had failed to see or change.

After the attempt, Ellen carried guilt for relying on Dr. Sato’s assessment when Cody had plainly expressed suicidal thoughts. Hospital staff’s eventual documentation of his longstanding fatigue confirmed her earlier concerns, but that recognition came too late to prevent the harm he had suffered.

At Cody’s bedside on Friday night, Ellen heard him snore naturally and felt the weight of almost losing him. The question he mouthed—“Can I sleep?”—showed his fear that ordinary rest might be interpreted as another attempt to die. She answered that he could sleep without permission, even as the need to reassure him pained her.

Ellen took pride in Cody’s ASL, AAC use, college-level essays, and later work as an advocate and author. She welcomed his developing relationship with Andy and their shared adult life. His achievements affirmed the value of immediate access while also requiring her to recognize that support did not give her ownership of his decisions.

Cody knew that Ellen had believed his illness and challenged doctors before 1995. He also knew that she had trusted Dr. Sato and taken him home after his explicit suicidal statement. He later held both facts within his account of the attempt, without reducing it to either his choice alone or the dismissal alone.

After he became nonspeaking, Cody received Ellen’s immediate support through ASL, AAC, advocacy against presumed incompetence, and the cooperative. She changed family routines and his educational setting to make room for his communication and illness.

As an adult, Cody collaborated with Ellen on publications and conference presentations. Their professional partnership recognized his expertise rather than treating him as the subject of hers. It also left room for his criticism of the ways her care had become controlling; consent to her early essays did not settle that concern permanently.

Health and Communication Access

Ellen had spent nearly two decades documenting cases in which disabled residents’ symptoms were dismissed as “behavioral problems” or “attention-seeking.” Her disability-services work gave her language for medical dismissal and experience challenging it.

For Cody, that expertise did not secure recognition of ME/CFS. Clinicians treated his fatigue as “just depression,” stress, or a need for exercise and prescribed fluoxetine for depression without identifying the physical illness. Advice to push through exertion worsened his symptoms. Ellen continued advocating but could not make the clinicians revise their account.

Dr. Sato’s dismissal of Cody’s suicidal statement as “typical teenage melodrama” became the most painful example of that gap. Ellen recognized medical dismissal in her work but trusted this physician’s assessment of her own son. She later acknowledged that an emergency evaluation should have followed Cody’s statement.

After Cody’s acquired speech disability, Ellen drew directly on her work for communication access. Her Friday-night ASL decision and pursuit of AAC reflected her view that language access was an immediate right, not a last resort after months of therapy that might not restore speech.

The homeschool cooperative applied that principle to education. With Greg and the Davis parents, Ellen built rest, ASL, AAC, and flexible posture into the schedule. Cody could be tired without shame and learn while lying down when needed, with academic expectations intact.

Ellen also opposed strangers’ assumption that Cody’s AAC device meant intellectual disability. She insisted on his intelligence and decision-making capacity, even as Cody later asked her to apply that respect to decisions on which they disagreed.

Their later writing addressed medical dismissal, communication rights, and the difference between protection and control. “How I Failed My Nonspeaking Son” examined Ellen’s conduct as well as clinicians’ failures; her personal guilt became part of a public argument for accountable advocacy.

Crises and Changes

The 1995 Attempt

The attempt changed Ellen and Cody’s relationship. After relying on Dr. Sato’s dismissal of “I don’t want to wake up tomorrow,” Ellen took Cody home; he overdosed on fluoxetine that evening. She found him, called 911, and spent four days beside him in intensive care while a ventilator supported his breathing. She remembered those days as the worst of her life.

The crisis forced Ellen to confront the limits of expertise. She had spent nearly two decades fighting medical dismissal, yet had relied on it in Cody’s case. Her guilt remained part of her parenting, writing, and advocacy rather than ending with his survival.

Friday Hospital Vigil

On Friday night, Ellen heard Cody’s unassisted breathing and cried beside his bed. His request for permission to sleep exposed how frightened he remained. She responded by committing the family to ASL and seeking other immediate communication access, while the emotional work of understanding his trauma continued.

The Homeschool Cooperative

The Matsuda and Davis families created an educational setting that included the accommodations their sons needed. Ellen taught history and disability rights while Cody produced advanced work. The cooperative shifted her role from seeking adjustments within traditional school to helping build a curriculum and schedule around actual access.

Cody’s Autism Diagnosis

Cody’s diagnosis at roughly twenty to twenty-two gave Ellen language for his literal thinking, social trust, routine needs, and high intelligence. It informed their family conversations and her work on neurodiversity without replacing the more specific history of his ME/CFS and acquired speech disability.

Accountability and Shared Advocacy

In 1996, Ellen published “How I Failed My Nonspeaking Son: A Mother’s Confession” with Cody’s consent and collaboration. Later research and presentations developed into an adult professional partnership. Their work addressed medical dismissal alongside Ellen’s own controlling behavior and presumed incompetence. Cody kept authority over his account and later examined their relationship in “My Mother the Dragon.”

Lasting Impact

Ellen remained the mother who believed Cody’s illness and fought for him, but also the one who trusted Dr. Sato’s dismissal. After the attempt she arranged ASL and AAC access, helped build the cooperative, and continued supporting his adult work. Neither the failure nor the repair erased the other.

Through her writing and changed conduct, Ellen showed Cody and her colleagues that professional expertise did not prevent mistakes and that accountability required listening to the person harmed. Cody’s later criticism made clear that a public confession was only one part of that work.

For Ellen, Cody’s crisis exposed a professional and parental failure, while his later life taught her about access, autonomy, and the limits of protection. His advocacy and writing did not simply validate her decisions; they gave him a platform from which to assess and challenge them.

Their publications and presentations influenced disability studies, social-work education, and policy conversations about nonspeaking communication, autism, chronic illness, and medical dismissal. “How I Failed My Nonspeaking Son” became required reading in some programs, while Cody’s independent memoir and collaborations kept his perspective distinct from Ellen’s.

Within the Matsuda family, the crisis and repair shaped Susie, Pattie, and Joey’s understanding of communication access and continued presence during severe illness. Their shared learning of ASL made accommodation part of everyday family life rather than a special concession to Cody.

Ellen and Cody’s relationship remained both familial and professional. The medical system’s failures, Ellen’s own misjudgments, Cody’s acquired disabilities, and their later public work all affected it. Their collaboration endured because his autonomy and right to disagree became as central to the relationship as her commitment to advocate for him.

Relationships Family Relationships Parent-Child Relationships