Category: General

On July 10th, the federal government’s Office of Autism Research Coordination (OARC) released a new report analyzing the distribution of autism research dollars in 2010. This report – entitled the IACC ASD Research Portfolio – is an annual responsibility of the federal government under Public Law 112-32. At first glance, the report shows significant steps forward on one of the key priorities of the Autistic and autism communities: the percentage of research funding going towards services research: OARC reports 16% of the autism research agenda funding this priority, up from 3% in 2009. However, further scrutiny reveals that rather than an actual increase in the percentage of funding allocated to services research, OARC instead chose to re-classify existing training programs as “research” to give the impression of progress. Instead of getting more funding for services-research, we! ‘ve just gotten creative accounting, re-classifying practitioner training programs as research activities.

Autistic people and our families deserve better. Help us tell OARC as much by signing our action alert to HHS Secretary Kathleen Sebelius, NIMH Director Tom Insel and OARC Director Susan Daniels, urging them to revise the 2010 IACC Research Portfolio Analysis to reflect the real data. Furthermore, tell them that we’ve noticed how little progress has been made in funding research into the needs of Autistic adults – still only 2% of the research agenda. Demand real action to address the imbalances in our autism research agenda. It is time to make them hear our voices.


From ASAN:

Over the last few months, our fight against the Judge Rotenberg Center has heated up. The JRC, the only facility in the country to use contingent electric shock as a means of “treatment” of disabled children and adults, has been increasingly spotlighted in the news both locally and nationally. Public attention has grown due to Cheryl McCollins’s lawsuit on behalf of her son Andre, who in 2002 received over 31 shocks while restrained facedown for refusing to remove his jacket.

Yet for over twenty years, the Massachusetts legislature has failed to enact laws that would ban the use of electric shock as a “treatment” for developmental disabilities and behavioral challenges. The closest Massachusetts has come to restricting the use of electric shock was through Department of Developmental Services regulations implemented last year that prohibit shocks for any new students, but codify their use for students already receiving the shocks. It’s a step in the right direction, but we know it doesn’t go far enough.

This year, the Massachusetts legislature now has another opportunity to close the JRC for good. Senator Brian Joyce, whose district includes the JRC, has attached an amendment to the Massachusetts Senate budget that, if passed, would codify a complete ban on aversives – torture in the name of treatment. The State Senate passed Amendment #548, which bans all use of contingent electric shock and other aversives, but the Senate version of the budget has been passed to a Conference Committee that must reconcile differences between the Senate’s and House’s versions of a final budget.

A protest of the JRC last week in Massachusetts drew nearly one hundred supporters in the pouring rain, followed shortly thereafter by an ASAN joint letter to the Conference Committee carried thirty signatories from local and national disability, human rights, and youth empowerment organizations. It is critical to urge the Conference Committee members to pass Amendment #548. The JRC has already been lobbying throughout the Massachusetts Legislature in another attempt to stop any measure that would end their practice of abuse and torture, and it is imperative that the voices of those who support a future for people with disabilities free of these barbaric practices be heard.

Sign our PETITION to the members of the Conference Committee urging them to pass Amendment #548. Massachusetts has an opportunity to remove the shadow of the JRC from its reputation and to take an important step forward in supporting equal rights for all people, but your voices must be heard!

Stop the torture of Disabled People!

PO Box 66122 | Washington, DC 20035 US


Over the course of the last several months, a lot of questions have been raised about how upcoming changes to the DSM-5 definition of the autism spectrum will impact people’s lives. Many people are concerned that changes in the diagnostic criteria may make it more difficult for them to access services, supports and accommodations. How are the changes likely to impact Autistic adults applying for services from a state Intellectual and Developmental Disability (I/DD) agency, or for disability payments from the Social Security Administration? What about parents trying to figure out how a change in the diagnostic criteria will impact their interactions with the school system? Or Autistic adults seeking accommodations in the workplace or at a college or university? Today, ASAN is proud to release a new policy brief providing specific and meaningful information to help answer these questions.

Co-written by ASAN President Ari Ne’eman and ASAN chapter leader and UCLA graduate student Steven Kapp, our new policy brief is the first of two reports we will be releasing analyzing the issues surrounding the autism spectrum and the DSM-5. In it, we review the likely effects of DSM-5 on IDEA-mandated special education services, income support programs like SSI and SSDI as well as associated public health insurance, services from state I/DD agencies and access to legal rights under the ADA and Section 504. We found some interesting things, showing how DSM-5’s proposed ASD criteria could impact our community in both positive and negative ways. We also include some recommendations to the work group writing the DSM-5, suggesting some ways that the draft criteria can be improved to avoid doing harm while still retaining the positive developments we have seen to date. Take a read, and if you share our thoughts, please make your opinions known to APA.

The public comment process remains open till June 15th, and we urge you to use our policy brief to help take advantage of this opportunity to be heard. Details of how to send your thoughts to APA can be found at this link and our report is available by clicking on its title below:

What Are the Stakes?
An Analysis of the Impact of the DSM-5 Draft Autism Criteria
on Law, Policy and Service Provision


Dear Friends:

This week, the media reported that over $1 billion has been spent over the course of the last decade on autism research funding. During a time of constant budget cuts and increasing fiscal pressures on government, this is an astonishing sum. What have we purchased for this investment? How successful has the autism research agenda been in making the American dream a reality for Autistic people and our families? Has our society discussed the ethical, legal and social consequences of how autism research findings may be used? We think these questions are worth asking, and with your help, we think it is past time to get more people involved in the discussion.

Last December, the Autistic Self Advocacy Network joined with the Harvard Law Project on Disability and the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics to hold a symposium on the Ethical, Legal and Social Implications (ELSI) of Autism Research. Supported by a grant from the Administration on Developmental Disabilities, the ASAN ELSI Symposium served as the launching point for a robust conversation about changing the way our society approaches autism research. From our partnership with federal research funders to get self-advocates on grant review panels to growing attention to ethical issues on topics like prenatal testing, self-determination in service-provision and more, the need to introduce values into our national autism research dialogue remains stronger than ever.

Over the course of the month of April, we will be releasing captioned videos of December’s ELSI Symposium. The first is already available on our YouTube channel:

You can help us get the word out by watching it alone or with your friends and colleagues, sharing it on facebook and twitter, and starting to talk about these things in your own community. The time has come for our voices to be heard.

Nothing About Us, Without Us!
Ari Ne’eman
Autistic Self Advocacy Network


Debra A. CarrDirector,Division of Policy, Planning, and Program Development
Office of Federal Contract Compliance ProgramsRoom C-3325200 Constitution Avenue, N.W.Washington, D.C. 20210February 20, 2012

Dear Director Carr:The Autistic Self Advocacy Network appreciates this opportunity to comment on the proposedrulemaking implementing Section 503 of the Rehabilitation Act of 1973; these regulations will strengthenemployment protections and require affirmative action for individuals with disabilities seekingemployment with federal contractors. The Autistic Self Advocacy Network is the nation’s leadingadvocacy organization run by and for autistic adults. We would like to note that we also support thecomments provided by the Judge David L. Bazelon Center for Mental Health Law and the NationalDisability Leadership Alliance.First, it is our pleasure to support strongly the Office of Federal Contract

CompliancePrograms’ Noticeof Proposed Rulemaking with regards to Section 503. In particular, we commend OFCCP’s identificationof a utilization goal for the hiring of people with disabilities by federal contractors and its requirement fordata collection to ensure effective monitoring of progress. These provisions would bring federalcontractors’ disability-based affirmative action obligations in line with historically successfulrequirements to conduct affirmative action programs for race and gender.Second, we a pplaud OFCCP’s consideration of a sub-goal for individuals within targeted disabilitycategories. OFCCP’s broader utilization goal adopts the definition of disability set forward by the ADAAmendments Act (ADAAA) of 2008. It is worth noting that the ADAAA’s definition of disability isdesigned to be very broad. Such a broad definition is necessary and appropriate in the context of an anti-discrimination law. However, given Section 503’s more narrow purpose of rectifying past discriminationagainst people with disabilities with the greatest history of exclusion from the workforce, we believe thata sub-goal of five to six percent for individuals from targeted disability categories is appropriate. Aprogram of affirmative action must be more narrowly tailored to meet the needs of those whosedisabilities are most likely to lead to exclusion from the workforce.

We note that the ADAAA definition of disability covers well over seven percent of the population. It isquite likely that most employers already possess people with disabilities as seven percent of theirworkforce (OFCCP’s proposed utilization goal) under the ADAAA definition. Furthermore, manyemployers who do undertake efforts to ensure they meet the broader utilization goal may attempt to do so

by “creaming the crop” and only employing individuals with the least stigmatized and easiest toaccommodate disabilities — rather than those with the greatest history of workforce exclusion. Thus, asub-goal is critical to ensure that affirmative action efforts incorporate people with the greatest history of exclusion from the workforce.Furthermore, in light of current employment data, the definition of targeted disabilities should incorporateAutism Spectrum Disorder (including Asperger’s Syndrome and PDD-NOS).

According to the NationalLongitudinal Transition Study (NLTS-2), the proportion of autistic young adults who had a job wasnearly half that of all young adults with disabilities (33 percent vs. 59 percent). The proportion of autisticyoung adults who had a job was comparable to that for young adults with deaf-blindness and multipledisabilities and far below the proportion of those with blindness, learning disabilities, or traumatic braininjuries (Standifer, 2011). NLTS-2 data also shows that the proportion of autistic young adults workingfull time (as defined as 35 hours or more per week) was one-third that of all young adults with disabilitieswho were employed (26 percent vs. 71 percent). Given the fact that autistic adults face greater exclusionfrom the workforce than most groups of people with disabilities, including several already incorporatedwithin the targeted disability definition, we believe that the inclusion of Autism Spectrum Disorder withinthe targeted disability category is appropriate.OFCCP’s Notice of Proposed Rulemaking notes the possibility of a 2 percent sub-goal for individualswith targeted disabilities. We believe that such a sub-goal is set too low.

According to the SubstanceAbuse and Mental Health Services Administration (SAMHSA)’s National Survey on Drug Use andHealth, 4.5 percent of the population has a serious mental illness (NIMH, 2012). According to researchfunded by the National Institute for Disability and Rehabilitation Research (NIDRR), 2.7 percent of thepopulation has a severe cognitive impairment (Kraus, Stoddard, & Gilmartin, 1996). These twocategories — severe intellectual disability and serious mental illness — are already covered within thedefinition of targeted disability category and already exceed the utilization goal considered by OFCCP.We urge the consideration of a utilization sub-goal for individuals with targeted disabilities in the 5-6percent range, and for OFCCP to consider revising upwards its utilization goal for the broader populationof people with disabilities accordingly.Finally, we urge OFCCP to modify the Section 503 regulation to explicitly prohibit contractors frommeeting their affirmative action obligations through sub-contracts to sheltered workshops.

Currently, theregulation states that,“Contracts with sheltered workshops may be included within an affirmative actionprogram if the sheltered workshop trains employees for the contractor and the contractor is obligated tohire trainees at full compensation when such trainees become ‘qualified individuals with disabilities.’”Research suggests that this represents a significant loophole that will be exploited — if not closed.Although this provision is not novel to the NPRM and exists within the underlying Section 503regulation, the addition of a utilization goal and other provisions aimed at meaningfully enforcing Section


Start of quoted massage from GRASP:
Please forward to whomever you deem appropriate…

Dear all:

There is breaking news regarding the forthcoming fifth edition of the Diagnostic and Statistical Manual (DSM-V), which is due out in early 2013.

Spectrum individuals who are better able to mirror greater society will most likely not qualify for a diagnosis under the most recent revisions. Please contact the DSM-V committee through the American Psychiatric Association (see below) and protest their newest proposed changes.

Though our membership was split on the subject, GRASP supported the changes in terminology that were first reported almost two years ago. Eliminating the diagnosis of Asperger’s Syndrome (AS) (as well as Pervasive Developmental Disorder-Not Otherwise Specified), and putting everything under the umbrella of “autism” was jarring, as many of us have gotten used to the term “AS” to explain certain aspects of our identity. But seeing as no discernible line in the sand could be drawn that truly separated AS from autism (though the clinical world tried), the merger made theoretical sense. Furthermore, any spectrum diagnosis, in essence, served us well enough as it placed our behavioral differences within the context of wiring, and not through the judgmental lens of interpreted character deficits—as had existed before AS was legitimized in the DSM-IV in 1994.

But sadly, we may be heading back to the days of character deficits. Now it appears that the terminology is not all that will change with the DSM-V. Now, it appears that only the more severe cases will qualify for diagnosis or services.

In a report being published in tomorrow’s New York Times, the DSM-V committee appears to be acting in consort with clinicians who believe there is a presence of “over-diagnosis” of spectrum conditions in the U.S. While the clinical world was merely adhering to the requirements proposed in 1994’s DSM-IV, the DSM-V committee inexplicably seems to want to reverse the clock back to 1993, simply because the social services, educational, and advocacy worlds are not yet able to accommodate the numbers of people who are on the spectrum. Oddly enough, we believe that the majority of the clinical world does not believe in problems of “over-diagnosis,” and that the DSM committee surprisingly represents a minority opinion (most, if not all members of the committee have worked exclusively with only the more challenged end of the spectrum). Lastly, the ideas of “over-diagnosis” are almost always heard through bitter, emotionally-unhealthy tones; revealed as theories that are usually the product of people too afraid to admit how dumb we all were prior to 1994.

Suspiciously, the DSM-V committee has released these changes one month after taking away the opportunity for us to make comments (through their website) to proposed revisions. In lieu of the means to write them, please instead call the DSM authors, the American Psychiatric Association, at 703.907.7300 and tell them that you object to these changes. Not only will tens of thousands of spectrumites—if not more—be at risk for going back to the days when we were thought of as rude, nervous, or incompetent; but equal numbers of spectrumites will happily be denied the services they need by financially-strapped agencies. Fiscal concerns cannot be invalidated, but this is not the answer.

It is very hard for many to understand how diverse, and how complicated the autism spectrum really is. But to have what should be the leaders of our clinical world (a) subtley waging a competition of suffering between opposite ends of the spectrum, by invalidating the negative experiences of one side, and (b) succumbing to such a dumbing-down of the autism spectrum, if not knowledge itself, is unconscionable. Please make that call.


Michael John Carley
Executive Director
The Global and Regional Asperger Syndrome Partnership, Inc.
End of quoted message from GRASP

from a post by Ken G.

Katie Miller is among the small group of women diagnosed with autism. She’s also a gorgeous artist who’s never been on a date and has difficulty meeting new people. But to her, being autistic isn’t the disadvantage it might seem.

For several years, Katie Miller, a 27-year-old artist based in Parkton, Maryland, 30 miles north of Baltimore, found inspiration in newborns. She nudged her friends, family, and neighbors to allow her to photograph their tiny babies so she could paint painstakingly detailed portraits of them. That work would take hours, so Miller tacked handwritten notes to the walls reminding her to eat and take breaks. “I am so extremely focused that I don’t realize I’m hungry or have to go to the bathroom,” she explains. “I only later realize my muscles hurt from sitting in one position for so long.”

That unwavering intensity isn’t just the mark of a die-hard artist. Eight years ago, Miller was diagnosed with autism, the neurological and developmental disorder that affects a person’s ability to socialize and communicate with others. Her marathon painting sessions are just the kind of repetitive behavior typical among many with high-functioning autism, often classified as Asperger’s syndrome. (The American Psychiatric Association has proposed doing away with the Asperger’s designation and folding it into an expanded “Autism Spectrum Disorder” diagnosis.) Miller can be somewhat stilted around others, unsure in her small talk and struggling to understand basic gestures like smiles and winces.

But what’s most striking about Miller’s autism is that it was even identified at all. Roughly 80 percent of the estimated 1.5 million Americans living with autism are men; because the disorder is so commonly associated with boys, women are notoriously underdiagnosed. “Girls are better at overcompensating for their autism, perhaps because they usually have better communication skills or because the drive for social conformity is more pronounced for them,” explains Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University (and, coincidentally, the cousin of comedian Sacha Baron Cohen). In other words, it’s easier to discern a problem in a boy who obsessively memorizes baseball stats going back 50 years. But a girl whose autism is expressed by meticulously drawing pictures or who has difficulty making eye contact is a less obvious candidate. “Professionals are worse at detecting autism in females,” concedes Baron-Cohen.

When Miller was a child growing up in Florida and, later, California, her parents dismissed her obsessive behavior as the quirks of a budding artist. And to some extent they were. She could fritter away an entire day sketching or copying pictures out of books. “I’d throw a fit if I couldn’t draw something right,” Miller recalls. But as she grew older, she became more withdrawn. Her worried parents took her to several psychologists. One diagnosed her as having obsessive-compulsive disorder; another said she was depressed. None of their assessments, however, seemed to capture the private, lonely world Miller occupied. “We’d never even heard of Asperger’s,” explains Jim Miller, Katie’s father, a retired engineer at Intel. When she enrolled in the Maryland Institute College of Art, where she earned both a bachelor’s and an MFA, Miller began researching her symptoms online and concluded that she might have autism. She presented her findings to a neuropsychologist, who confirmed her suspicions. “It was definitely a relief to find out what was really going on,” says Miller.

From all outward appearances, Miller looks like a typical 20-something, though her bold sartorial tastes (bedazzled sunglasses, banana-yellow clogs) point to an unusual sensibility. Still, it’s not until you step inside her parents’ home, where she lives in a room decorated with bright-blue carpets, an acid-green chair, and a grape-purple couch, that it becomes clear that Miller harbors an uncommon affinity for eye-popping color. “Being autistic has affected my vision of the world, which has affected my art,” she says. “I notice different things than other people do, about color, shape, and pattern.”

Miller’s astounding draftsmanship, her ability to paint with an almost photographic quality, may be related to her autism. Though scientists and doctors can’t quite explain it, many with the condition have incredible math, music, or artistic talents. Some experts speculate it may have something to do with the obsessive repetitive behaviors that children with autism develop — they tend to “practice” their craft more intensely and with greater focus than other children. “I owe my painting to a lifetime of focus,” explains Miller. “I had a bit of natural ability but mostly an intense interest and drive. I wasn’t drawing amazing things when I was a little kid. But I drew a lot, a lot, a lot. I kept at it more than most.”

Her autism also makes her acutely sensitive to overstimulation, which triggers a reaction called “stimming” — rocking back and forth or humming, for example. A loud jukebox, a crowded restaurant, even the pungent odor from a grill, can trigger a meltdown of anxiety, tears, and even vomiting. “I hear a loud noise and I have to cover my ears because it’s so painful,” Miller says. She braces for the worst-case scenario by lugging around a large pair of Day-Glo headphones — the same bulky, noise-canceling model used by construction workers. Putting them on instantly transports her out of the maddening noise to a place of peace and quiet. She also carries a piece of blue fabric dabbed with heavy jasmine perfume, which she holds over her nose when she’s overcome by the smell of fish or smoke. Even prolonged eye contact can make Miller uncomfortable. During conversations, she reflexively reaches for a soft, plastic dinosaur in her bag, one of several “stim toys” she keeps in her purse, and squeezes it until she can focus.

All of which made college — and now the art-gallery scene she inhabits — a complicated social labyrinth for her to navigate. “Neurotypicals” — a common term for the neurologically normal — “like spontaneity, socializing late at night, loud places. They like to hang out in bars and go to parties,” she says. Any one of those things would send Miller reeling. When a friend walks by and flashes a smile, Miller confesses that she doesn’t always know how to read this generic gesture of goodwill. “I don’t get the difference between a nice expression and a not-nice expression,” she sighs. And despite her all-American good looks, Miller remains single, unable to decode the flirtatious looks and body language that are the preamble to a hookup. “When I tell people that I don’t ever get dates, they always say, ‘But you’re so pretty and talented!'” she says. “But meeting people seems like magic to me” — that is, a mysterious and elusive talent enjoyed by others.

Nonetheless, Miller does maintain a robust social life, having joined the burgeoning network of autism activists. She is an outspoken proponent of the “neurodiversity” movement, which maintains that autism isn’t a disease to be cured but a different way of seeing the world, an alternative form of intelligence. To some, autism is an undesirable glitch in the complicated wiring of the brain; the neurodiversity crowd speculates that, in fact, some of history’s most successful and creative people had autism. (Bill Gates and Albert Einstein are often name-checked, though neither has ever been confirmed to have had it.) As such, the condition should be nurtured, not isolated and treated.

“I don’t have autism — I’m autistic. In the same way you wouldn’t say you have femaleness, you’d say you are a woman,” Miller explains, as she tidies up her parents’ two-car garage, which she converted into a studio. In recent years, she’s moved on from newborns. Her work now features oversize toddlers who look, oddly, at once mature, even strangely alluring, yet young and defenseless. Examining one of her paintings, head tilted to the side, she explains, “I suppose you could say I relate to them a lot.”

Samples of her work are here :

Dear Friend,

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5:

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5’s criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5’s final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, “First, do no harm.” As such, it is essential that the DSM-5’s criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case – namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument – no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.


Ari Ne’eman
President of
Autistic Self Advocacy Network

Scott Badesch
President of
Autism Society


Last Friday, the New York Times ran an expose documenting the systemic overuse of psychotropic medication by New York’s residential service-provision system for people with intellectual and developmental disabilities. According to the Times, people with developmental disabilities in group homes in New York are more likely to be given Ativan, an anti-anxiety drug that also serves as a tranquilizer, than multivitamins. In many cases, psychotropic medication is prescribed as a chemical restraint to control behavior, even when it lacks any therapeutic purpose. Although there are appropriate uses for medication, lack of oversight has led to clear and systemic abuses. No one should be medicated for the purpose of controlling behavior.

This isn’t a new problem. Data from the National Core Indicators project, a national database run by the Human Services Research Institute and the National Association of State Directors of Developmental Disability Services, shows that the percentage of people with developmental disabilities receiving psychotropic medications is much higher than the percentage who have the co-occurring mental health conditions which might justify their use. The long term side effects of such inappropriate usage include obesity, diabetes, long term brain damage, injury and even death. As a result, we are asking you to join us in writing to the New York Office of People with Developmental Disabilities and the NY Legislature to tell them to take action against chemical restraint today! Our action alert can be found at:…sabilities

Your voice will help make a difference. Please take the time to send a message to the State of New York that chemical restraint is never appropriate, then pass along the action alert to your friends and family and ask them to do the same. Help us spread the message far and wide.

Thank you for your advocacy,

The Autistic Self Advocacy Network


As we approach the end of the year, many of you will be getting ready to spend the holiday season with your families. As you do, we hope you’ll take a moment to remember all that we’ve accomplished together this year.

From our Navigating College handbook to our Symposium with Harvard Law School on Ethical, Legal and Social Issues in Autism Research, this has been an exciting year for the Autistic Self Advocacy Network. We celebrated our fifth anniversary, engaged in advocacy on critical issues like stopping the Judge Rotenberg Center’s abuse of children, fighting for more public support on critical topics like transition supports, true community integration, stopping restraint and seclusion and more.

In addition, our programming has helped build a stronger voice for the Autistic community in many sectors of American life. In our Keeping the Promise report, we partnered with other national self-advocacy groups to help define community living resulting in a document now being used by advocates and policymakers nationwide. Through our participation in the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), we are breaking new ground by ensuring the participation of Autistic voices in the research process. What’s more, 2012 promises to bring even more progress.

In 2012, our new internship program with Freddie Mac will result in new job opportunities for Autistic adults. Our forthcoming Autism Campus Inclusion initiative will help train the next generation of Autistic leaders and build a network of Autistic-run organizations on college campuses across the country. Not to mention our continued advocacy and activism to ensure that wherever autism is being discussed, we have a voice at the table – together.

Will you help support our work to keep the self-advocate voice front and center in 2012? Please consider an end of year donation to the Autistic Self Advocacy Network. With your help, the momentum we have begun this year can continue and build real and lasting change for our shared community. All donations are tax-deductible.

Ari Ne’eman
The Autistic Self Advocacy Network

PS. If you are unable or uncomfortable making donations online, donations can be sent to

The Autistic Self Advocacy Network
PO Box 66122 NW
Washington, DC 20035