Follow-Up on the House Committee Hearing on Autism

Content Warning: Discussions of vaccine-causation, presumptions of incompetence, silencing of Autistic people

I wrote this for the ASAN December Newsletter, which can be found here.

On November 29, 2012, the House Committee on Oversight and Government Reform held a hearing on the federal response to issues related to autism. Initially, there had been no Autistic witnesses invited to testify on this, nor had there been any representatives of organizations founded and run by Autistic people. This initial lack of input from Autistic people was concerning and generated considerable response. Following this response from the community, two Autistic witnesses were invited: Ari Ne’eman of the Autistic Self Advocacy Network, and Michael John Carley of the Global & Regional Asperger Syndrome Partnership.

The stated purpose of the hearing was to get a clearer picture of what is being done for Autistic people, what has yet to be figured out, and what needs Autistic people and their families have. Ari Ne’eman noted that despite the large budget for autism research, very little research is done into improving services for Autistic people and their families, with only 1.5% of the National Institutes of Health funding for autism research dedicated to assessing or meeting the needs of Autistic adults. He called for an increase in funding for research that will actually improve the quality of life and the ability to communicate for Autistic people. In fact, both Autistic witnesses noted the current imbalance in research and the need to use research money on projects that can improve support for Autistic people, rather than exploring issues related to causation. Mr. Ne’eman noted that if even a tenth of the budget currently allotted to researching causation were available for communication needs, non-speaking Autistic people would have greater access to Alternative and Augmentative Communication (AAC), allowing them to communicate their own wants and needs, both to Congress on their own behalf and to their family and service providers on a daily basis.

Also discussed were issues that can interfere with diagnosis, such as the possibility that the gender imbalance in diagnoses may be a self-fulfilling prophecy, wherein girls do not fit the stereotypical idea of autism and therefore go undiagnosed. Additionally, Autistic people of color are generally diagnosed later in life than Autistic Caucasians, and middle to upper class Autistic people are diagnosed earlier than Autistic people from low-income families. As a diagnosis is required for most relevant services, the disparity in diagnosis is a significant difficulty in making sure that Autistic people and their families get the supports they need.

In response to talk of autism as an “epidemic” and a “tragedy,” both Autistic witnesses had responses. Mr. Ne’eman noted that it is more than possible to determine if the rate of autism is even actually rising, questioning the factual accuracy of the “epidemic” language. Research into determining the rate of autistic spectrum disorders in adults as the criteria are currently interpreted can be done and, if the rates are similar to the rates among children, then the term “epidemic” is inaccurate as well as disheartening. He noted that a recent study in Britain suggests that the rates may, in fact, be similar, with findings that approximately 1% of British adults are Autistic. Mr. Carley of GRASP chose to mention that Autistic people generally can understand what is said in front of them and read what is written about them, noting that hearing such terrible things about yourself as being called a burden, a tragedy, or an epidemic can contribute further to our often too-low self-esteem, and that everyone needs to hear about what they cando as they grow, not just about what they can’t do. The hearing demonstrated that while there is much funding for research, the funding for services, for improving services, and for helping Autistic people communicate are all insufficient, and that the voices of Autistic people are urgently needed in the discussions of how to fix these insufficiencies.

Panel Event on Disability and Inclusion in the Humanities

One of two things I wrote for the ASAN November Newsletter.

On November 14th, shortly before the ASAN annual gala, there was a panel at Georgetown called “Disability and Inclusion in the Humanities.” Lydia Brown, ASAN intern, writer of Autistic Hoya, and Georgetown student majoring in Arabic and Psychology, arranged this panel. Four speakers were invited: Kassiane A. Sibley, a current pre-med student and associate editor of “The Thinking Person’s Guide to Autism”; Elizabeth J. Grace, an assistant professor in Diversity in Learning and Teaching at National Louis University and writer of Tiny Grace Notes (aka Ask an Autistic); Renleigh Martin Spencer, a member of the Disability Center planning committee at Georgetown; and Ki’tay Davidson, the Director of Ableism Awareness and Community Outreach for the Disability Rights Coalition at American University.
All four panelists were people with disabilities. Both Elizabeth and Kassiane are Autistic, and all four had personal stories to share above and beyond the discussion of the broad institutional issues that people with disabilities face in the humanities. Ableism–discrimination against people with disabilities–is a huge problem. Examples of ableism include making people get a more recent evaluation (We need to make sure you’re still autistic/dyslexic/using a wheelchair!) in order to get any accommodations, giving only the bare minimum of accommodations and that only grudgingly, insisting on viewing disability as a purely medical issue with basic accommodations that should mean the person now functions exactly as a non-disabled person does, and ignoring the existence of people with disabilities as people who are a part of the human condition. Kassiane noted that she needed to constantly remind her professors “that my … condition is the human condition. I am a person too,” and Elizabeth recalled that her fellow professors were the ones who had the most difficulty accepting the value of disabled perspectives on disability. Her students were excited to hear what disability was like from someone who actually experienced it, but her colleagues insisted that it was neither rigorous nor academic to use personal experience in this way.
The idea that disability could be an identity was also a big discussion point, both as something that is important and as something that still needs work. Kassiane told the audience about having to look up the sign for “Autistic” and how her American Sign Language teacher tried to correct her from saying “I’m Autistic” to “I have autism,” ending with Kassiane asking “You have deaf?” Of course he didn’t “have deaf”- the idea of Deaf and Blind being cultural identities as well as disability labels is more accepted than for most other disabilities, though even those communities are occasionally subject to others insisting that they are people with their disability, that they should “not let their disability define them.” While this separation from disability as a defining attribute was a step forward from concluding that a disability meant spending life hidden away from the rest of the world, it does not allow for a sense of group identity or for the inclusion of disabled people as a group in the same ways that other marginalized groups have aimed to be included–as a group of people that are different and whose differences are a part of their identity, not a medical issue that has nothing to do with who they are. Ki’tay noted that “We need to bring it (disability) into the cultural realm,” and Renleigh agreed, stating, “Any sort of identity studies should come first,” and talking about how we need to understand oppression in light of disability. These facets of disability studies are all important, and the panelists explained the importance of all these facets, their interactions, and the importance of proper disability studies in creating a culture of inclusion both in the humanities, and in society as a whole. Renleigh holds that promoting disability studies in the academic world will also promote disability culture in society, which is an important part of proper inclusion. Inclusion of a group should not depend on pretending that this group is exactly the same as everyone else, but on accepting and embracing the differences, and that requires more than a purely medical model of disability that ends at simply providing needed services.

Finding Home at the Gala

The other of two things I wrote for the ASAN November Newsletter. 

On November 14, I also went to the ASAN second annual gala. I was almost an hour late, having gotten stuck in traffic on the way from the Disability and Inclusion in the Humanities panel to the gala with the organizer of the panel and a few of the panelists who were also attending the gala, but what I arrived to was more than worth the wait. When I arrived, it was to…Autistic space!
Autistic space is not like neurotypical space. In Autistic space, stim toys are readily available, such as the blue ASAN Tangles at every seat, and carrying them with us to fidget with when talking to other attendees was completely normal. Instead of the loud clapping applause normally used, we use jazz hands or flapping at the end of speeches or anywhere that clapping would normally be appropriate. That the inability to use spoken language and having nothing to say are two completely different things is accepted as a fact, and is not an issue that leads to continuously needing to prove and re-prove competence. If and when a topic is difficult or triggering, it’s considered acceptable to step outside. There is no need to apologize for acting visibly autistic or for the “forgetting” of faces that can come from face-blindness or from simply not looking at people. Sure, this was a gala at the National Press Conference, but that didn’t mean that we suddenly needed to act like neurotypical adults at their most formal–the social rules common to the outside world need significant modification for use in Autistic space, including a requirement of being as direct and clear in communication as possible given current language abilities and a complete suspension of asking for eye contact. That’s what I found at the gala. I found people talking about important things in language I could understand and being OK with the people fidgeting and flapping and looking off in a completely different direction than the speaker, knowing that this was simply our natural way of being, not some attempt at disrespect.
I heard about self-advocacy and including people in communities, about the importance of Alternative and Augmentative Communication, and about needing to stand together. I heard about not letting the world isolate and mistreat any group that they were somehow convinced was really the group to isolate, no matter how much “but this time we’re sure!” we might hear. They’re never as sure as they think they are, not with Autistic people and not with anyone else. I heard more about the Loud Hands Project, which I submitted a semi-poem to, and finally got to see the video used for fundraising for it. All things affirming the acceptance of autism as a difference that is a disability not in need of elimination or cure, but simply support for a different way of being, were to be found at the gala–it was one of few spaces where I felt completely safe.
Kassiane wrote after Autreat that she had found her family, that it was the Autistic community, and after traveling to Washington, DC for the annual gala, I have to say the same. The Autistic community is another family for me, one that makes sense and that understands both the advantages I have and the difficulties I face. The Autistic community understands that this is who we are, for better or for worse. The gala itself may have only been two hours out of a busy day, but in a world that is not yet designed for people with brains like ours, it meant family and it meant home.