When it comes to disability advocacy, the details matter. A lot. For many years, the self-advocacy movement has worked to put out the right messages and help communicate the values of inclusion, self-determination, and community integration to the broader disability world. In some ways, we have made tremendous progress. Even parent and provider organizations regularly pay lip service to the ideas we believe in. However, advocacy is about more than just ideas—it is about lived experiences. Our work isn’t just about changing the rhetoric of the autism and disability worlds, it is about changing for the better the lives of Autistic people and other people with disabilities. In this regard, we still have much to do.
Policy is made or broken by the details. Recent events provide us with some great examples of this simple truth. As the American Psychiatric Association deliberates on the definition of autism within the DSM-5, significant impacts on people’s lives may all come down to the details. As the Center for Medicare and Medicaid Services deliberates on how to define what is and what is not a Home and Community Based Setting in Medicaid, basic liberties for people with disabilities will be safeguarded or threatened by decisions about the details. Twenty-two years after the Americans with Disabilities Act, we face the stark realization that our civil and human rights depend on getting a seat at the table to discuss the details. In truth, nothing can be more important. Will the promises this society has made to people with disabilities be kept or forsaken? The details will decide.
In light of this, ASAN is working to help develop the resources necessary to make sure the self-advocacy movement isn’t left behind when the time comes to talk about details. Last week, we released key talking points for community members to use in their comments during the American Psychiatric Association’s public comment period on the DSM-5. Over the course of the last month, we’ve released video footage from our December Symposium at Harvard Law School on the Ethical, Legal, and Social Implications of Autism Research. And in the weeks to come, we’ll be preparing policy briefs and action alerts analyzing both the draft DSM-5 autism criteria and how to define Home and Community Based Services in Medicaid to help give people concrete information to empower themselves as we work together to try and impact these issues. Still, as important as the details are, none of these resources can have their intended impact without one last irreplaceable input—you. The disability rights movement depends on strong and committed activists to help make sure that those in power know that our voices will not be denied. As we prepare to face key decision points in the national conversations about autism and disability this summer, don’t forget the power of your voice. Our community needs it now more than ever.
The latest CDC report about the frequency of autism places the prevalence of autism at 1 in 88, a new figure from the previous 1 in 110 prevalence. The prevalence among Blacks or African Americans jumped by over 90%, while the prevalence among Latinos or Hispanics increased by 110%. A much-higher prevalence of autism in people without documented intellectual disability brought the figure of Autistic people without intellectual disability to an estimated 62%, while the ratio of identified Autistic males to females grew wider, to five Autistic males for every Autistic female.
“The increased rate of autism spectrum diagnoses reflects, at least in large part, matters of identification such as improved diagnoses and greater awareness and efforts to diagnose ASD,” said Autistic researcher and doctoral candidate Steven Kapp.
The CDC’s report also acknowledged that at least some of the increase in prevalence is directly attributable to better diagnostic methods and increased access to diagnostic evaluations for people of all racial or socio-economic backgrounds. Anthropologist Roy Grinker, whose daughter is Autistic, argued in his 2007 book Unstrange Minds: Remapping the World of Autism that any increase in the prevalence of autism can be traced directly to both increased awareness and understanding of autism and to changing definitions of what is recognized as autism, as many people recognized as Autistic today have in the past either received inaccurate diagnoses or been overlooked completely.
“That rates in the CDC report especially rose among Hispanic and black children and children without intellectual disabilities suggest important progress in reaching underserved groups,” Kapp said, commenting on the shifts in prevalence among different racial and ethnic groups.
In the wake of a study earlier this year that showed that Black or African-American Autistic children are more likely to receive late diagnoses than White Autistic children (Gourdine et al. 2011), which may occur alongside less access to appropriate accommodations, supports, and services in a school setting, as well as higher likelihood of negative housing and employment outcomes following the transition into adulthood.
As the CDC not only confirms that the prevalence of autism among racial or ethnic groups is similar but that prevalence has been underreported among traditionally underrepresented groups, it is even more important to work toward improved cultural competency among diagnosticians and centers providing supports and services to individuals and families.
Yet despite the step forward in recognizing the need to better serve and support Autistic people from underrepresented racial and ethnic groups, the CDC report highlighted a growing disparity in access to diagnosis and identification around gender.
“Nevertheless, the higher male-to-female diagnostic ratio is troubling,” said Kapp.
We know from experience that women and girls on the autism spectrum are more likely to receive later diagnoses, misdiagnoses, or no diagnosis at all because learning, sensory, or social difficulties in women and girls may be attributed to qualities traditionally associated with femininity rather than examined objectively. It will be necessary to expand the scope of existing diagnostic tools in order to better recognize and identify Autistic characteristics in women and girls to prevent the increased marginalization of Autistic women and girls who deserve equal access to supports and services but who, without a diagnosis, may be unable to receive those supports and services.
“[It] suggests continued professional and community challenges in recognizing ASD in women and girls,” Kapp said, “especially those with subtler manifestations.”
Recently, a blog that takes on issues around disability written by people with various disabilities, called Disability Right Now (DRN), was created. The idea for the blog started when Erin Lewy, Editor in Chief and Project Organizer, was watching the play 8 about the trial of Prop 8. That’s when Erin realized there was real marriage equality issues for people with disabilities.
“Erin wanted to find her community and get a dialog going about this and other issues,” says Savannah Logsdon-Breakstone, who is an autistic advocate as well as DRN’s publicist and a member of the writing team.
Timing, as they say, is everything. We asked why DRN launched when it did, and found that it was prompted by an issue the Autistic Self Advocacy Network (ASAN) has been involved with as well.
“Disability Right Now launched when we did because of the murder of George Hodgins,” replied Logsdon-Breakstone. “When we found out about the vigils, we settled on doing our official launch to match up with that. Our entire launch—and our first blog event—is kind of dedicated to George and others like him.”
Earlier in March, George Hodgins was murdered by his mother, who then killed herself. As a response, ASAN and many other disability rights organizations called for nationwide vigils to honor those who were killed by family members and caregivers.
DRN’s first blog event was around the issue of Euthanasia, also called “mercy killings.” While future blog events are planned, the normal schedule provides updates weekly on a wide range of disability topics.
The Autistic Self Advocacy Network is a nonprofit organization by autistic people for autistic people. We are committed to being included in the nationwide conversation about autism. While public policy is a major emphasis, ASAN has many other aspects including many programs. These activities need people to sustain it.
Are you interested in our efforts? Do you have a little time each day? Week? Month? We invite you to fill out our volunteer form as we are always on the lookout for energetic autistic people and allies.
U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius has named 15 new public members to the Interagency Autism Coordinating Committee (IACC), which provides guidance to HHS and other federal agencies regarding autism research. According to a press release from the IACC, Secretary Sebelius chose individuals who could best advise her on research opportunities and emerging needs in the community.
The Autistic Self Advocacy Network is pleased to announce that Scott Michael Robertson, our co-founder and Vice Chair of Development, is among the IACC’s new public members. Scott is a Ph.D. candidate in information sciences and technology at Penn State University’s University Park campus. He holds a bachelor’s degree in computer science from Rensselaer Polytechnic Institute and a master’s degree in human-computer interaction from Carnegie Mellon University. His research pursuits in the fields of disability studies, human-computer interaction, and computer supported work/learning focus on understanding and improving the lives of people with neurological and developmental disabilities. He has authored several peer-reviewed academic journal articles and conference papers, and he has actively served the cross-disability and autism communities as a mentor, teacher, advocate, public speaker, and writer.
The final public commenting period is now open for the upcoming fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual, which provides the diagnostic criteria for many conditions, including developmental disabilities. The proposed changes include a revised definition of autism that will combine several existing diagnostic categories into one unified autism spectrum category. Visit the DSM-5 public comment announcement page on the APA website to learn more about the proposed revisions to the manual and how to submit your comments on them. Comments will be accepted through June 15, 2012.
Autism Acceptance Day and Month were started in 2011. This year—International Autism Acceptance Year—marks the second year of the transition from “awareness,” which often features negative portrayals of autism and ineffective activities such as putting out blue light bulbs, to acceptance, which embraces the concept of neurodiversity, the legitimate existence of all neurological disabilities and differences. Many Autistic advocates and allies participated in writing blog entries, articles, and other efforts to promote true acceptance of Autistic people in society. Over 1300 people have joined the Facebook event, which is ongoing, and almost 300 have joined the permanent Facebook community. The Autism Acceptance Day blog had almost 7000 hits in the first part of April. A collection of articles that have been written about acceptance of autism, links, and other information, is on the site.
The Autistic Self Advocacy Network features original blog entries on autism acceptance written by Autistics, parents, and allies in the blog section of our new website. The essays address the subjects of self-advocacy, ethical research, neurodiversity, and much more. We are exploring questions such as: What does autism mean to you? How do you relate to the Autistic community? How do you feel the Autistic community benefits self-advocates, family members and others? What kinds of issues should the Autistic community think about going forward? What does moving from awareness to acceptance mean to you? How can we improve the relationship between parents and self-advocates in the years to come?
The Thinking Person’s Guide to Autism (TPGA) ran a series on autism acceptance during April. The idea of Autism Acceptance Month has now been taken up by other organizations, and the Commonwealth of Massachusetts has declared April Autism Awareness and Acceptance Month. While it is too early to know whether making a change in the name of a month by mainstream organizations is a strong commitment to the principles of neurodiversity, these efforts may herald a step in the right direction.
A medical malpractice lawsuit brought against the Judge Rotenberg Center (JRC) by the mother and guardian of Andre Collins, who had been strapped down and subjected to electric shocks for several hours while he was a teenage student at JRC, went before a jury in April 2012. Shain Neumeier, a law student at Suffolk University in Boston, attended the trial and wrote a series of articles about it. An expert witness testified that Andre, now in a state institution, sustained severe psychological damage as a result of JRC’s actions. The defense contended that JRC had complied with medical standards of care and that JRC’s treatment of Andre was reasonable. While the jury was deliberating, the case was settled for an undisclosed amount.
JRC is the only facility in the United States that uses shock devices for behavior modification purposes, a practice condemned as torture by the United Nations and under investigation by the U.S. Justice Department. Its founder, Matthew Israel, left JRC last year as a consequence of a plea bargain agreement for criminal charges relating to destruction of evidence. The state of Massachusetts recently enacted regulations prohibiting the use of electric shock; however, the ban is prospective and does not protect JRC students who were already attending the facility before the regulations went into effect.
Since the Supreme Court’s landmark decision in Olmstead v. L.C., disability rights advocates and the federal government have been working together to try and close institutions and get people with disabilities supports in the community. Unfortunately, as the advocacy community has made progress on this issue, some unscrupulous provider groups have attempted to game the system by re-branding institutions or institution-like settings as in the community. For example, in 2010 the State of Missouri tried to use Home and Community Based Services (HCBS) dollars to create a “gated community” consisting of large group homes surrounded by a fence on the grounds of an old state-run institution.
In April 2011, the Center on Medicare and Medicaid Services proposed a groundbreaking new rule preventing HCBS dollars from being used for institution-like settings. ASAN and 94 other disability organizations urged CMS to follow up on that proposal and make it into a final rule. Unfortunately, after receiving intense opposition from the provider lobby, they chose not to follow through. Last month, CMS proposed new, much weaker regulations that don’t offer the same protections of the 2011 proposal. ASAN and other disability rights organizations are preparing to mobilize to urge CMS to issue strong regulations defining community so as to prevent institution-like settings from getting HCBS dollars. Members of the public can send comments to CMS by searching for CMS-2249-P2 at regulations.gov and providing input anytime prior to July 2nd, 2012 (NPRM reads June 4th, has since been corrected to July 2nd). In 2011, ASAN released a joint report with Self-Advocates Becoming Empowered and the National Youth Leadership Network entitled, “Keeping the Promise: Self Advocates Defining the Meaning of Community Living“.
Have you been harassed in your place of work? Your assistance has been asked in helping identify harassment in the workplace. The important factor sought is how you may have experienced harassment differently than your non-autistic peers. This work is being conducted to better understand the damaging effects to Autistic employees as a result of harassment and what necessary steps should be taken to prevent it in the future.
If you would like to participate, please consider contacting Cathy Burge at email@example.com. This information is being requested in helping an ongoing legal action.
The Autistic Self Advocacy Network applauds Secretary Sebelius and the leadership of the Department of Health and Human Services for the creation of the new Administration on Community Living. By bringing together the HHS Office on Disability, the Administration on Developmental Disabilities and the Administration on Aging under one roof, the Department has sent a clear message about its commitment to the cause of community integration for all people with disabilities.
This new administrative structure will open up new opportunities for policy innovation and collaboration across silos. Furthermore, the elevation of the Administration on Developmental Disabilities out of the Administration for Children and Families reflects a positive acknowledgement of the reality that developmental disabilities are lifespan issues and do not go away after childhood. We applaud the Department for this exciting new initiative, and look forward to working with the Administration on Community Living on ensuring the full integration of Autistic people and others with disabilities into society. (Original posting 4/16/2012.)