As we close out 2012, we reflect on a year united by twin themes: joy and sorrow. The Autistic community has been through a lot in 2012, and the tumultuous events of our December, the great joys and devastating sorrows, form a fitting end to a transformative year.
First, the joy. As 2012 drew to a close, ASAN’s Loud Hands Project, a transmedia publishing project dedicated to Autistic voice and culture, released our first anthology on Amazon. This anthology represents the culmination of a year’s effort, and sends some of the strongest voices in the autistic community further out into the world. We celebrate the growth, beauty, and resilience of Autistic culture, and we look forward to what our community comes up with next.
But this December also saw great sorrow. The Autistic community joined our broader communities in mourning the tragedy in Newtown, Connecticut. Media reports of the atrocity initially speculated on a link between autism and violence, but subsequent coverage took pains to stress that, while Adam Lanza may have had an ASD diagnosis, there is no link between autism or mental illness and violence, that people with disabilities are exponentially more likely to be the victims of violence, and that stigma kills. ASAN was active in providing media outlets with accurate information, stemming backlash, and mourning the victims from Newtown.
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 can do 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.
Several months ago, I wrote to Rhode Island Commissioner of Education Deborah Gist about her proposed diploma policy, which has caused high anxiety among disabled students and their parents. Today, I met with her to discuss those concerns. I’ll preface the report by saying that Commissioner Gist struck me as a logical, bright person who has the best interests of disabled students in mind.
We talked about her new certificate program. Gist stated that her main concern is that the state is handing out diplomas to students as though they are “awarded simply for attendance.” Gist believes that a diploma handed to a student who does not demonstrate basic skills, such as those tested by the New England Common Assessment Program (NECAP), does not carry much worth. The new certificate, she believes, will be more valuable to those who receive it than such a diploma.
Under Gist’s new diploma system, students must demonstrate at least partial proficiency on the 10th grade NECAP test or show improvement in their deficient skills between the times they take the test and their graduations. If the students fail to show improvement on the NECAP exam, they can take a modified version. If they again fail to perform in an acceptable way, they may submit accepted substitute tests, such as the SAT or ACT, to prove their competence. If they cannot do any of these things, then they can stay in the education system for any amount of time necessary for them to develop the required skills.
The students who will be receiving the certificates instead of diplomas are the students who will not take the NECAP test and will instead take an alternative assessment. The alternative assessment cannot earn them a diploma. Gist reported that the only people who would be taking the alternative assessment were young adults who would need life-long care and assistance. When I told her my concerns that employers often look specifically for a high school diploma, Gist elaborated that these individuals, if seeking employment, would almost certainly be doing so through job coaches. The certificate lists specific skills and strengths the individual has, supposedly for an employer to interpret strategically.
Gist argued similarly in response to the concern that this certificate would be tracking students with disabilities away from the rest of the population. I began to explain what a certificate could mean to an individual socially and emotionally and was in the process of expressing a counterargument, to which she seemed to be responding, when her secretary came in and told us we were out of time. Gist quickly offered to meet with me again—a gesture that I consider a very positive sign—and expressed that she was open to any further questions via email in the meantime. She said she was interested in the points I was making and was happy to consider them fully.
I did not get the chance to present the full argument that I was hoping to communicate to her, but Commissioner Gist’s responses were favorable. I believe I have set up a good argument that I can effectively follow through with at our next meeting.
Henry on Inclusion
The right to inclusion is a basic civil right for all people. I am a person. I have these rights.
I did not know about inclusion and advocacy before my friends Tracy Thresher and Larry Bissonette. It was cool to meet guys that communicate like I do. They opened the door for hopeful times of freedom.
We went to some conferences with Larry, Tracy, Harvey and Pascal. I like being in the sea of acceptance and respect. It feels like my home. There it is my voice that is heard.
Presume competence. Parents and teachers it is hurting people if you do not. It is very hard if you do not.
My family sees my intelligence and respects my differences. I see their intelligence and respect their differences. We should all do the same for each other.
Last year I started reading about inclusion and found out about Ari Ne’eman. I read about his high school time. It was hard. He also did not like being at a segregated school.
I met Ari at the Autism Summer Institute. I wrote to him about my school and he understood. He helped me advocate for my rights. ASAN helped with the petition. He is also autistic. He is also my friend.
I did not read about a person who liked being in a separate school away from their friends learning cooking for life skills for living. Reading is living. Learning history is living.
Some parents and schools think separate is ok. If they listen to us they will understand it is not. We want to learn the same things. We are not so different.
I met many friends at ASI. Many autistic friends that advocate for equality. They stood by my side. I am proud they are my friends. I am proud to be an autistic self-advocate.
I am not finished because I can go to Wilson. I am just starting.
News and Advocacy Updates
In the wake of the horrible events that unfolded in Newtown on December 14, there has been much speculation in news coverage of the tragedy regarding the shooter’s potential autism spectrum diagnosis. Whether Adam Lanza was on the autism spectrum or not, ASAN and the Autistic community emphasize that autism does not make individuals more prone to violence, and in fact disabled and mentally ill people are, on the whole, much more likely to be the victims of violence than to commit violent acts. You can read ASAN’s full statement on the matter here.
For the past several months, through the efforts of project coordinator and organizer, and ASAN staff member, Julia Bascom, ASAN has been collecting first-person accounts from people throughout the autism spectrum and from all walks of life. The anthology of essays, The Loud Hands Project is now available on Amazon. This rich anthology features Autistic voices on a broad array of personal, social, and political issues affecting the Autistic community. Order your copy today!
Earlier this month, the Florida First District Court of Appeals upheld the Florida Agency for People with Disabilities’ eligibility rule that excludes people with Asperger syndrome from seeking services through the agency. Unfortunately this decision cannot be appealed to the State Supreme Court. ASAN provided information to the Court in the case, and we are disappointed with the Court for failing to consider and protect the needs of people with Asperger syndrome. If and how the diagnostic changes in the upcoming DSM 5 will affect such policies and decisions in the future remains to be seen.
After a multi-year process of revision and community engagement, the APA has approved the proposed changes to the DSM 5, including the revised criteria for autism spectrum disorders. Under the new DSM, the criteria for Asperger’s syndrome, autistic disorder, and PDD-NOS have been combined into a single unified diagnosis of Autism Spectrum Disorder. ASAN has been following the changes to the DSM 5 since the outset, and over the summer released two detailed policy briefs outlining the implications of the proposed changes for the autistic community and service provision. We will continue to closely follow the changes to the DSM 5, and we remain confident in the revised criteria.
Researchers with the Academic Autistic Partnership in Research and Education (AASPIRE), including community partners from the ASAN, have found that Autistic adults report significantly worse healthcare experiences than their non-autistic peers.
The study included an online survey of 437 participants, including 209 autistic adults. Autistic adults reported more unmet healthcare needs, more frequent use of the Emergency Department, and less use of preventative services than non-autistic adults. They also reported lower satisfaction with provider communication and less comfort in navigating the healthcare system or managing their health. Conclusions suggest an overall need for improved healthcare for Autistic individuals, including those who may have fewer perceived disability-related needs. AASPIRE has released a press release discussing their finding, and you can read the full study online here.
AASPIRE is still conducting additional studies as part of their overall project of producing a special toolkit to help improve healthcare access and quality for Autistic adults. You can find information about participating in additional surveys on their website.