• Lindsay Mohler,

No! Our Advocacy is Not “Partial” or Performative

Updated: Oct 4, 2020

Contributors: Lindsay Mohler, Ira Eidle, Cassandra Crosman

{Image description: SpongeBob ripped into two pieces in his Boating School classroom, with each half lying on the floor next to a ripped paper, with the caption “This is what ‘partial representation’ looks like.”}

We have seen very little compassion towards autistic people from the National Council on “Severe Autism,” and this is certainly not the first attack Lutz or the NCSA has made on the Neurodiversity Movement. NCSA is not actively working on ending discrimination, ending systemic oppression, or improving equity. Neurodiversity includes all autistic people, regardless of how they communicate. The divide between the autism community and the Autistic Community has not ceased. The Autistic Community is capable of becoming leaders in society and parents are biased because of the misinformation and lack of education in regards to disability rights. For a person such as Lutz to assume that autistic people cannot be successful in life and take on responsibilities shows the lack of empathy and ableism that NCSA continues to show. Professionals, when doing research for autistic people, are biased. In this Psychology Today article titled “When Autism Advocacy is Partial,” Amy Lutz, from the National Council of “Severe Autism”, claims that autistic advocacy by pro-neurodiversity self advocates is “partial,” while the NCSA themselves are not actively working to end discrimination, systemic oppression, or improve equity for nonspeaking autistic individuals and autistic people with high support needs. The author claims to have coined a new term, “partial representation,” in an article they have contributed to titled, “Ethical Advocacy Across the Autism Spectrum” that was published in The American Journal of Bioethics. Lutz defines ‘partial representation’ as, when an actor claims to represent a particular group of people, but appropriately engages with only a subset of that group,” or advocacy that is “incomplete and biased”. The fallacy is that the advocacy done by the NCSA is “incomplete and biased.” Their claim that non-speaking autistic individuals are unable to speak for themselves, just because they communicate differently, is one that has created false reporting and alienates non-speaking autistic people. This strips them of their autonomy and civil rights. The NCSA claims to be the “voice” for non-speaking autistic individuals, while excluding these individuals from their advocacy since they falsely believe they have no capacity to speak or advocate for themselves. The National Council of Severe Autism was founded, according to Lutz, to “represent the other side of the spectrum.” But there is no “other side” to the autism spectrum, because it is not a binary or linear spectrum of low to high functioning, but is a gradient of different needs of each autistic person in different areas such as executive functioning, sensory input, perception, and communication among others. Just the name alone, “The National Council of Severe Autism” is ableist because there is no such thing as “severe autism”; autism is not linear. The NCSA is led, not by the individuals they claim to speak for, but by individuals who are not autistic. These people are not treating the entire community as human beings. Instead, they support the same mindset that Lovaas did in the 60s: Alison Singer, the organization’s treasurer, who in the documentary, Autism Every Day, said, (with her child in the same room) that she ‘contemplated driving off a cliff with her and her autistic child inside. The National Council of “Severe Autism” also releases articles commonly promoted by the autistic dark web, or a group of people that are anti-neurodiversity. Examples such as their article, “The Autism Acceptance Hoax,” which tells us that the National Council of Severe Autism is anti-acceptance.

The NCSA lists the Autistic Self Advocacy Network as an example of what they call “partial representation”, due to their belief that they only represent autistic people who they consider to be “high functioning”. Ever since functioning labels for autism have been retracted by researchers and psychological associations, most parents, educators, and professionals still seem to cling onto the labels, as if autism is suggested to be quantitative. Two of ASAN's staff, past and present (one who is the founder)- Ari Ne'eman and Julia Bascom- published an article in March of 2020 in the same journal as Lutz. The article, titled, "Autistic Self Advocacy in the Developmental Disability Movement", shows us that advocacy is more than just for those who are percieved as "high functioning", and "only speaking". More to the point, the article's theme fits perfectly in the understanding that there is conflict, but the conflict is rooted in perceptions, and not in logic. "We believe we fulfill our ethical obligations only by defending the rights of all autistic people, including those with severe disabilities. Stepping back to understand the broader context of I/DD, advocacy should also call into question the authors proposed solution of limiting our advocacy efforts only to “subgroups within the broader autistic population.” They published a very well-written article that Lutz does not seem to be able to grasp.

While research about autism is gradually moving away from a cure, and a large majority of autistic people do not want a cure, researchers that research autism still create hegemony while using implicit bias and false reporting. The Autistic Self Advocacy Network has multiple non-speaking autistic people on their board. There are at least three in their leadership who are either nonspeaking or minimally speaking-Amy Sequenzia, Ben McGann,and Hari Srinivasan. There are other board and staff members who require constant care. Being able to speak does not mean that someone is able to live independently and the inability to speak does not mean someone requires constant care. One way critics of the Neurodiversity Movement try to shut this argument down is by accusing non speaking advocates of using pseudoscience to communicate, ergo, that their caregivers are puppeting them and the written words are not actually theirs. It is a type of logical fallacy known as moving goalposts.

Lutz infers that autistic individuals are unable to be successful and continues to not presume competency. Presuming competence is key for acceptance of autism, and is defined as to assume every autistic person has the capacity to think, learn, and understand, regardless of personal bias. This limits the rights and the presumed competence for any autistic individual in the disability community. Parents who are prominent advocates for autism policy are not always autistic themselves, and because of this, when they do advocacy on behalf of autistic people, they think they are doing us a service when often, they speak over autistic voices, or may actually advocate for things that are harmful to our population. This creates a ‘savior complex of sorts’ where the Neurotypicals feel like they are some kind of good samaritan for “helping” autistic people. The harmful policies these saviors tend to advocate for are related to healthcare coverage of ABA, creating segregated job settings for autistic people, specifically, instead of pushing for employers to be more inclusive, and promoting guardianship and conservatorship. This strips autonomy and freedom away from autistic people. The NCSA does not value identity, civil rights, or equity for autistic individuals. Identity is immensely important for the process of acceptance, which includes identity-first language. Identity-first language is not the only aspect of autistic identity or culture. What Lutz and many other people seem to not understand about self-advocacy is that the self-advocacy movement was created by people with high support needs. Those people were considered “severe,” yet they started and led an entire movement that led to the passage of Section 504 and the Americans With Disabilities Act. The most “severely disabled” people-that is, people who may need more support- have always been at the forefront of the Disability Rights Movement. One of the early influencers of the Neurodiversity Movement was Mel Baggs, who was autistic and minimally speaking. Sie was what Lutz would consider “severely autistic”, yet sie galvanized a lot of now prominent advocates in the community. The default assumption that someone with an intellectual disability, or someone who is unable to speak, is that their brains must be on autopilot. Everyone has a brain and a mind, and just because someone may not speak, it does not mean they are not human beings, or do not understand you. It is a continuous pattern that people will dehumanize autistic people. This lack of understanding of disability from most is nothing unusual and is likely due to disability being rarely mentioned in most history curriculums.

{Image Description: An image with a pink background with a white center that reads, “Authentic Allyship with the username @seerutkchawla. The circle has arrows with the labels, “Sitting with discomfort,” “It’s not about you” “Not virtue signalling/and taking real action,” “Committed to anti-racist work,” “Examining own privilege and using it to help,” “Educating yourself,” “Brand is of no concern,” “You’re taking risks and holding yourself and others accountable,” and “Empathy/grief/outrage.” Images are about allyship for people of color and fighting racism; however, they also can be applied to allyship for disability rights and disabled people.}

{Image Description: An image with a yellow background with a white center that reads, “Performative Allyship with the username @seerutkchawla. The circle has arrows with the labels, “You’re benefiting,” “Centering yourself,” “Virtue signalling” (showing receipts),” “Your statement appeared after you were called out,” “Everyone’s doing it so I have to,” “You’re resentful,” “White fragility,” PR/Brand/public profile management,” “Bandwagoning,” and “Optics.” Images are about allyship for people of color and fighting racism; however, they also can be applied to allyship for disability rights and disabled people.}

Lutz does not seem to grasp allyship and chooses to speak over autistic individuals. Our advocacy is not “partial,” it includes everyone. It includes nonspeakers. It includes autistic people with intellectual and learning disabilities. It includes autistic women, trans and nonbinary people. It includes autistic people of color. We celebrate diversity and intersectionality. Unlike Lutz and the NCSA, we don’t divide autistic people by functioning labels. She says, in the article: “The problem arises when representatives fail to recognize or acknowledge their own partiality.” Yes, we still have work to do. We need to ensure that autistic minorities are represented in all spheres of our advocacy, as well as in media depictions of autistic people. But the work that NCSA is doing is harming autistic minorities, not empowering them. Lutz says that, “In our paper, we argue that any group that purports to represent the entire autism community is obligated to “actively engage and consult with both autistic people and those closest to autistic people who lack the capacity to participate in decision making themselves.” Autistic people are capable of decision making skills, with consented help along the way.

The Autistic Community and Neurodiversity Movement is very much inclusive of people with all kinds of disabilities. The claim that our advocacy is “partial” shows a lack of understanding of the movement and the many diverse voices and bodies that encompass the Autistic Community. It also shows a failure to recognize the history of self-advocacy as a whole and reinforces the same tired argument that has been made against disability rights for decades. Neurodiversity is for everyone. Disability rights are for everyone. Self-advocacy is for everyone. Everyone means everyone, which is the opposite of partial.


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