On Tuesday, a fiery exchange took place between autistic advocates and autism parents the quarterly Interagency Autism Coordinating Committee meeting about inclusion, civil rights, and the usefulness (or lack thereof) of functioning labels. IACC is a government advisory panel responsible for setting federal research priorities. Only three of the 31 IACC members are autistic themselves. None of the federal members are autistic, nor is the committee chair.
In a written comment, Jill Escher, a long-time foe of the validity of autistic advocacy and civil rights, submitted a blog post she wrote about neurodiversity on the official San Francisco Autism Society website. She complained that neurodiversity has ruined the validity of autism as a diagnosis because it includes “high functioning” people like the autistic representatives on IACC and “low functioning” people like her own children. This sparked a tense conversation among members of IACC that revealed the deep divisions between autistic adults and the autism parent community.
Autistic committee member John Elder Robison began his response by pointing out the care that he and the other autistic advocates take to represent not only themselves, but other autistic people with different or higher support needs. “I feel like any of us who serve on this committee as autistic people must recognize our duty as autistic people, who were appointed and not elected, to do our very best to represent all individuals on all points of the spectrum. I always have that in mind.” Robison then affirmed that both civil rights and medical science deserve equal attention.
Sam Crane, Director of Public Policy at the Autistic Self Advocacy Network affirmed Robison’s point, adding, “I would really caution the assumption embodied in [Jill Escher’s comment] that if I’m here at this meeting then I must not have [epilepsy, gastrointestinal issues, self injurious behaviors] and I must not understand these other medical needs, because medical needs affect really all of us.” Crane declared, “civil rights rights are not just for some of us. They are also for all of us.” She went on to state, “It is actually the people who need significant assistance to live independently that [autistic advocates] are most concerned about when we talk about civil rights.”
Dr. Larry Wexler, Director of the Office of Special Education Programs at the Department of Education, responded by defending Escher’s comments. “I think that the reason [Jill Escher] brought up her concern is because… To the general public if the face of autism is represented by [the autistic members of IACC] they miss the notion or the reality that autism is also young children who can’t talk, who have intellectual disability, who have terrific GI problems and all these other comorbid conditions,” seemingly ignoring Crane’s comments only seconds previously. “So I think the issue is of balance… We have to never forget that while civil rights is an important issue, we have to make sure to always represent the entire spectrum of autism and make sure that those who can’t speak for themselves have a voice here on the committee.”
Sam Crane shot back, “[The Autistic Self Advocacy Network] was, to my knowledge, the only advocacy organization that went to the Hill and said that people with complex communication needs and people who need Medicaid home and community based services in order to live independently need to be directly represented on the IACC… We strongly believe that people with significant needs need to be empowered to also speak for themselves.”
Alison Singer spoke next. In addition to being the head of the Autism Science Foundation and an IACC member, Singer is notorious for having once said, on video and in full earshot of her own autistic child, that she had considered committing disability-motivated murder suicide but the thought of leaving her normal child alone kept her from doing so.
“Many people with [with high support needs] are not able to come to the table and represent themselves and so they rely on their parents who I promise you do not give birth hoping that one day they’ll be able to file for guardianship to represent them. My daughter for example would not be able to physically sit at this table for more than five minutes… Because of her intellectual disability, she would not be able to really understand the conversation or advocate in any way for policies that would support her civil rights. So there is a large segment of our population that rely on parents to advocate for them.” Singer seemed completely unaware that there are many advocates with intellectual disabilities working in policy. She went on to question the validity of using “autism” to describe autistic members of IACC and people “like her daughter.” She then claimed, “just by sitting here and watching [autistic members of IACC] interact,” she could diagnose that her child is not like autistic adults who speak.
Sam Crane passionately responded to Singer’s misconceptions. “There are people who look like me who were diagnosed with classical autism. There are people like me who look like me who self injure. There are people who look like me who have epilepsy. There are people who look like me who have GI issues and there are people who look like me who need extremely intensive supports in order to live at home.”
Crane went on to suggest that perhaps IACC itself should change. “If we had people on the IACC people who have significant communication needs and people on the IACC who have significant independent living support needs, the IACC might look different. And I don’t think that’s a bad thing. The IACC is barely accessible to me, frankly, as a person on the autism spectrum… Maybe we should be changing how the IACC looks to make sure that these people feel included in conversations that affect us.”
John Elder Robison, who has been a longtime advocate for autism research, pointed out that creating new diagnoses and labels would not be a decision based in science. “The brain imaging, the blood typing, the genetics… All these prestigious institutions, they can’t separate me from an autistic person who is my age but is seemingly not able to take care of himself, nor are they able to separate me from children whose outcome is yet unknown… Until we do, I’m not sure how we could do better than we are now.”
Robison then made a call for unity, stating, “I am not your enemy. I am not your child’s enemy. We’re all in this together, and what we want is maximum quality of life for all autistic people.” He then returned to Dr. Wexler’s earlier comments about autism and public perception. “I think it sucks that because I’m articulate person people think it makes me a bad representative for autism, but shit, it’s the reality we have to deal with.”
Same Crane continued by pointing out that the DSM 5 changed how autism was classified because by adulthood, clinicians were unable to distinguish between people who had received Asperger’s syndrome diagnoses as children, and those who had received diagnoses of classical autism. Dr. Geraldine Dawson of Duke University’s Center for Autism and Brain Development concurred.
Edlyn Peña, a researcher from California Lutheran University made the final comment, “I do know people on the spectrum who use augmentative and assistive technology and it would be great if we had more representation of minorities in particular.” She was the only non-autistic member of IACC to suggest it was even possible for people with significant support needs to participate, as well as the only member to highlight the importance of more minority involvement. “There are a lot of voices in the autism community and we need more of those voices at this table.”
The entire exchange can be viewed on the IACC website, beginning at 2:59:20 and ending at 3:19:10. Subtitles are available. The next IACC meeting is scheduled for January 17, 2018