Stop Harmful Disability Narratives from Being Amplified
Leadership at the University of Pennsylvania and the Autism Parenting Summit
More than 30 years after the Americans with Disabilities Act (ADA) was signed into law, people in the disability community are still fighting for something basic: the right to communicate in the ways that work best for them.
We’re asking you to sign this petition because the way communication is discussed shapes what families are told to try, what schools and clinicians allow, and whether people are given a real chance to express themselves.
This petition was prompted by a recent New York Times opinion piece and ongoing public statements by Dr. Amy S. F. Lutz.
Nonspeaking people, family members, advocates, clinicians, educators, researchers, and university-based professionals have raised serious concerns that Dr. Lutz’s rhetoric does more than question specific communication methods; it dismisses and devalues the people who use them.
Dr. Lutz has repeatedly gone beyond professional disagreement. She has publicly suggested that families and communication partners are either deceptive or being deceived, and she has compared nonspeaking college graduates who communicate using letterboards or keyboards to “ventriloquist dummies.” For many people in the disability community, these statements are not simply controversial. They are shocking, dehumanizing, and deeply damaging to people who have fought for years to access communication and be recognized as thinking, capable human beings.
Dr. Lutz is a Senior Lecturer at the University of Pennsylvania. She listed her affiliation with UPenn to boost her credibility. It is a major university that helps shape future educators, clinicians, and researchers, and its name carries weight in public conversations about disability, education, and access. That influence comes with responsibility for the perspectives it promotes.
She is also scheduled to speak at the Autism Parenting Summit, a virtual event taking place May 15–18, 2026, that has more than 60,000 attendees registered. Families, caregivers, and professionals turn to events like this for guidance they can trust, especially when they are trying to make decisions about communication, education, and support. A platform of that size has an obligation to present disability and communication access responsibly.
Across the country, nonspeaking and minimally speaking people use augmentative and alternative communication (AAC), including spelling and typing, to express thoughts, make choices, build relationships, access education, and participate in daily life. Many families are elated to discover these methods after years of being told their loved one may never be able to communicate.
When these communication methods are publicly labeled as “debunked” without acknowledging context, modern evidence, and lived outcomes, it creates fear and doubt. Families may hesitate to pursue communication supports, schools and providers may restrict access, and nonspeaking people are once again forced to prove their competence.
This is not an abstract debate. It affects whether people are given access to communication at home, in school, in health care, and in community life. Communication access is a human right protected by federal law. Effective communication depends on the person and the context, and public platforms should reflect dignity, accuracy, and the lived experiences of nonspeaking people.
We urge the University of Pennsylvania to formally review Dr. Lutz’s public statements and conduct across platforms to determine how they can uphold their commitments to disability inclusion, academic integrity, and responsible scholarship. If UPenn chooses to defend her rhetoric, it risks implying that the many educators, clinicians, researchers, universities, health care providers, and public institutions that honor these methods are being misled or are knowingly part of an elaborate hoax.
We also urge the Autism Parenting Summit to reconsider whether Dr. Lutz’s rhetoric reflects the values it wants to elevate. On a platform trusted by thousands of families, associating itself with messaging widely experienced as dehumanizing toward nonspeaking people could seriously undermine confidence in the summit and in the information it provides.
Too many nonspeaking people have spent their lives underestimated, spoken for, or denied the tools they need to communicate. We should be expanding access, not limiting it.
Sign this petition to help protect the right to communicate.
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To:
Leadership at the University of Pennsylvania and the Autism Parenting Summit
From:
[Your Name]
Communication Access, Academic Responsibility, and Public Impact
Dear Faculty and Leadership at [the University of Pennsylvania/Autism Parenting Summit],
We, the undersigned organizations, professionals, advocates, and family members, write with deep concern about a recent opinion piece by your lecturer, Dr. Amy S. F. Lutz, published in The New York Times, which characterized certain augmentative and alternative communication methods as “debunked.” That framing is not just inaccurate. It is harmful. When a university-affiliated scholar publicly casts doubt on the legitimacy of communication methods used by nonspeaking people, the consequences do not remain academic. They reach classrooms, clinics, service systems, and families already fighting to ensure that nonspeakers are recognized as thinking, feeling, fully human beings whose communication deserves to be taken seriously.
At the federal level, the Americans with Disabilities Act requires effective communication, individualized determination, and appropriate supports. The standard is not whether a method fits professional habit or institutional comfort, but whether it works for the person using it. In joint guidance issued in November 2014 for public schools, the U.S. Departments of Justice and Education stated that schools must ensure communication with students with disabilities is “as effective as” communication with students without disabilities, must give primary consideration to the aid or service requested, and must make individualized determinations rather than rely on categorical rules. That same guidance specifically lists “a word or letter board” and “spelling to communicate” as examples of auxiliary aids and services for a person with a speech disability. Public efforts to categorically dismiss such methods contradict the individualized effective-communication framework federal agencies have used for years to protect communication access.
Within clinical practice, communication through spelling and typing meet the criteria for evidence-based practice, which requires the integration of research, clinical expertise, and the perspectives and outcomes of the person receiving services. They are used in educational and therapeutic settings and have produced meaningful outcomes for some individuals. Across the country and internationally, tens of thousands of nonspeaking people are using motor-based communication approaches in education, healthcare, employment, and daily life. Their communication is observable, documented in IEPs and healthcare records, and provides real-world evidence that these approaches can support meaningful communication for some individuals. Many are enrolled in colleges and universities, complete coursework, and earn degrees. If [UPenn/Autism Parenting Summit] chooses to stand behind Dr. Lutz’s framing, it is, in effect, suggesting that families, clinicians, educators, and colleges who recognize these outcomes are either naïve, deeply mistaken, or deceptive participants in an elaborate hoax, rather than people responding to genuine communication.
The claims in Dr. Lutz’s article and broader pattern of public statements prompted this letter. Labeling these methods “debunked” disregards the individualized standard required by disability law and the real-world outcomes any credible assessment should address. Assertions that “the science doesn’t back it up” present the evidence as far more settled than it is, particularly given the limitations of older studies, small sample sizes, evolving methodologies, and the absence of validated testing frameworks for individuals with significant motor-planning challenges. Yet message-passing studies are often treated as definitive while contradictory evidence, documented outcomes, and lived experience are discounted or ignored.
That approach raises broader concerns about scholarly rigor and academic integrity. [UPenn/Autism Parenting Summit] expects students and presenters to avoid selective reporting, misrepresentation, and omission of material evidence. When evidence supporting a predetermined conclusion is presented while conflicting data and observable outcomes are excluded, the work rightly invites scrutiny. It is therefore reasonable to ask whether [UPenn/Autism Parenting Summit] applies the same standards to faculty and speakers whose public statements carry institutional credibility.
Dr. Lutz’s suggestion that support necessarily invalidates communication is also deeply flawed. Support does not equal authorship. We do not ban spoken-language interpreters or ASL interpreters simply because interpretation carries the possibility of error or misrepresentation. We rely on qualifications, ethics, training, and safeguards to protect accuracy and autonomy. The same principle applies here. Assistance exists across accepted systems, including interpretation, assistive technology, and mobility supports. In those settings, support is not treated as automatic proof that the person receiving it has no agency.
Dr. Lutz also advances two ideas that are difficult to reconcile. On one hand, nonspeaking individuals are portrayed as too cognitively impaired to generate complex communication. On the other, they are treated as somehow able to detect and respond to subtle cues that trained professionals cannot reliably identify or measure. Applying Occam’s Razor, the more straightforward explanation is that some individuals are, in fact, generating meaningful communication when given appropriate support. Where uncertainty exists, it should lead to careful inquiry, humility, and safeguards, not blanket dismissal.
Dr. Lutz’s claim that these approaches create “false hope” also ignores observable outcomes. Hope is not false simply because it challenges low expectations. And when she suggests that age-level content and structured communication are inherently burdensome, she misrepresents how communication supports are used in practice. People are not deprived of preferred experiences; they are offered access to more of the world, often with increased engagement and participation as barriers are reduced.
These concerns are not limited to one article. In prior public forums, including the 2023 CARD conference, Dr. Lutz compared nonspeaking individuals using these approaches to “Hans the Clever Horse” and “ventriloquist dummies,” including in reference to Elizabeth Bonker, a college valedictorian. Taken together, this reflects a pattern of publicly questioning the authorship, credibility, and dignity of nonspeaking people rather than engaging seriously with communication access and lived outcomes. When such statements are made by a UPenn-affiliated lecturer under the university’s name, they risk reinforcing stigma and undermining [UPenn’s/Autism Parenting Summit’s] stated commitments to inclusion and respect.
There is also a deeper issue of harm. Denying communication access does not eliminate risk; it often increases it. When a person cannot reliably express pain, fear, abuse, consent, or preference, their safety, autonomy, and humanity are all put at risk. In disability fields, both the principle of “do no harm” and the least dangerous assumption point in the same direction: when uncertainty exists, we should avoid assumptions that most restrict opportunity, access, and personhood. The greater danger lies in deciding too quickly that communication is not real and that access is not worth supporting.
[UPenn/Autism Parenting Summit] now faces a choice. It can treat this as an abstract academic disagreement, or it can recognize the real-world consequences of allowing its name to lend authority to claims that undermine the communication, dignity, and credibility of nonspeaking people. We ask the [University of Pennsylvania/Autism Parenting Summit] to review how these positions are being represented under its name and to clarify how they align with the [university’s/conference’s] standards for academic integrity, disability inclusion, and responsible public scholarship.