Georgetown: Say No to Autism Speaks

Last week at the APSE conference, I ran into a Georgetown student volunteering at the Autism $peaks table who mentioned that they were thinking about starting an Autism Speaks chapter at Georgetown. As I told her in full hearing of the Autism Speaks staff person standing nearby, I will FIGHT from the administration all the way down to every member of the student body to make sure that NEVER happens--not at my university, not for as long as I am alive and in attendance.

I will use every poster, every Facebook status, every student group meeting, every list serv, every contact in the administration, every contact in student leadership, every member of the Autistic and allied and disabled communities, every weapon I have down to my own eye-teeth to END this idea before it EVER gains even the smallest bit of traction. Autism Speaks is an organization that does NOT represent Autistic people. They don't even include us in their leadership. Furthermore, their goal is to eradicate Autistic people. If you believe in equal rights for all people, including people with disabilities, you cannot in good conscience support Autism Speaks.

Fellow Georgetown students: Do not stand for speech that promotes ignorance, fear, pity, intolerance, and ableism. Autism Speaks would have you believe that its only opponents are "misguided high-functioning people." That is not true.

Autism Speaks is the organization behind the "Autism Every Day" public service announcement in which their former vice president stated that she considered driving off of a bridge with her Autistic daughter, and only refrained from doing so because she would also have had a non-Autistic child waiting at home; she made this statement on camera with her Autistic daughter in earshot in the room on screen. Autism Speaks is the organization behind the "I Am Autism" public service announcement in which an insidious voiceover claiming to be "autism" detailed all of the tragedy and horror and bad consequences of autism.

Autism Speaks regularly issues propaganda in which they say, "The rate of autism is higher than the rate of cancer, childhood diabetes, and AIDS combined," which compares a developmental disability to diseases. Their propaganda states that "1 in every 88 children will be diagnosed with autism." When we turn eighteen, we don't magically become non-Autistic. 1 in 88 people are Autistic. Autism Speaks would have you believe that we are living tragedies waiting for the day when we can be cured, when nearly every Autistic person I know does not want to be cured and does not believe in this concept of a cure. Curing me of autism conjures the same mentality as the idea of curing me of femininity; it's so fundamentally perverted and disturbing that words fail to describe how appalling and horrific the idea of severing an essential part of our humanity is to us. No, being Autistic is not sunshine and rainbows. But it is as much a part of who we are as our other attributes.

Among the Autistics who oppose Autism Speaks's anti-Autistic agenda are people who experience significant disability, people who have been institutionalized, people who have been educated in segregated "special needs" classrooms, people who have their own Autistic children, people who do not speak, people with multiple disabilities, and people who have faced extreme discrimination and prejudice against the disabled. Yet we are precisely the people whom Autism Speaks fallaciously claims to represent, and there is a large and growing number of us, Autistic people, who are vocal and adamant about our contempt for Autism Speaks.

Any organization that purports to "help" Autistic people, particularly at a university such as Georgetown that holds so highly the ideals of social justice, equity for all, and men and women for others, must be an organization that meaningfully includes Autistic people at all levels of leadership, including among the Board, officers, staff, and general membership; stands for practices, policies, and systems changes that will lead to equal access and opportunity across all spheres of life and the community for all Autistic people; promote positive and accurate information about autism, Autistic people, the Autistic experience, and Autistic culture; lend the most import to Autistic voices, whether literal or metaphorical, when determining perspectives, priorities, philosophies, and partnerships with other organizations or agencies; and support acceptance, understanding, and equal rights for Autistic people as Autistic people.

Autism Speaks fails all of these tests.

We cannot be a university that purports to support equal justice and equal rights for all if we allow the hate-mongering and fear-mongering that Autism Speaks represents to fester on our campus.

In the name of helping us, they hurt us. In the name of fostering "awareness," they propagate fear-mongering statistics and illogical analogies. In the name of serving individuals and families, they ignore the voices of Autistic people. In the name of appointing an Autistic person to one of their advisory boards, they perpetuate the tokenism of a marginalized population. In the name of science, they are complicit in perpetuating the dangerous and unfounded myth that vaccines cause autism. In the name of benefiting future generations, they threaten to commit pre-emptive genocide against all future generations of Autistic people. In the name of serving individuals with the most significant disabilities, they silence and de-legitimize the voices of all Autistic people, including those with the most significant disabilities. In the name of supporting Autistic people, their chapter leaders shout profanities in the faces of Autistic people who organize protests at their "Walk for Autism" events.

Autism Speaks does little, if anything, to benefit Autistic people, and what little they might conceivable do that benefits us is far outweighed by the gravity of their repeated failures and egregious violations of the principles that undergird the majority of progressive disability rights organizations, whether primarily social, advocate, or activist. The principles of the disability rights movement are to seek equal access and opportunity, not pity or charity, and respect for disabled people and people with disabilities to live as we are, and not in the perpetuity of hoping to become nondisabled because of societal projections and expectations; to seek full inclusion and integration of people with disabilities and disabled people across all facets of life and the community, rather than relegating us to nursing homes, institutions, segregated classrooms, and sheltered workshops; and to demand equal rights over ableist policies and practices in service provision, employment, education, healthcare, technology, transportation, and housing. Organizations that are in alignment with the principles of the disability rights movement are led, directed, and driven by people with disabilities rather than hand-holding or parading the few tokens included in any public role while nondisabled people rule the court.

To those students at Georgetown who wish to support organizations that benefit Autistic people and fight for rights and acceptance, not a cure and demagogic rhetoric that harms us, consider supporting organizations like the Autism National Committee, the Autism Network International, the Autistic Self Advocacy Network, the Autism Women's Network, or even the Autism Society. For cross-disability organizations that support the disability rights movement rather than the medical and charity model of Autism Speaks, consider supporting or joining organizations like TASH, the American Association of People with Disabilities, APSE, the National Council on Independent Living, the National Youth Leadership Network, the HSC Foundation, ADAPT, Self Advocates Becoming Empowered, or the Maryland Coalition for Inclusive Education.

If your interests are academic or you wish to integrate research and practice directly, consider supporting or joining research efforts through the Academic Autistic Spectrum Partnership in Research and Education, the Institute on Disability at the University of New Hampshire, the Disability Cultural Center at Syracuse University, the Institute on Communication and Inclusion at Syracuse University, the Burton Blatt Institute at Syracuse University, the Center on Human Policy, Law, and Disability Studies at Syracuse University, the Institute for Community Inclusion at the University of Massachusetts Boston, the Society for Disability Studies, the Harvard Law School Project on Disability, the National Collaborative on Workforce and Disability for Youth, or even Georgetown's very own University Center for Excellence in Developmental Disabilities.

On a side note, perhaps you're wondering why there are four separate listings for entities furthering the principles of disability rights hosted at Syracuse University and exactly one for Georgetown. (For those reading who aren't in the know, Syracuse is Georgetown's major rival.) As a Hoya, I see that as a challenge to those of us at Georgetown to develop and maintain excellent programming and collaboratives supporting disability rights to rival those already in existence at Syracuse. After all, we can't allow ourselves to be outdone by them of all universities, can we? I've proposed it before, and I'm proposing it again--Georgetown needs to create, develop, and foster a Disability Cultural Center or a Center for Disability Culture in order to promote both internal and community outreach to both people with disabilities and those interested in becoming allies through both social and academic programming as well as supporting student-led organizations whose charters align with the philosophy of disability rights, in the same vein as the programming and outreach efforts of the LGBTQ Resource Center, Women's Center, Center for Multicultural Equity and Access, and the Office of Mission and Ministry. Without such infrastructure in place, it is far too easy for predatory groups like Autism Speaks to mislead students and plant their poisonous roots on our campus in the absence of a strong, administration-backed disability rights presence.

Our student body is diverse in many ways, but while we acknowledge race and ethnicity, nationality, sexual orientation and gender identity, political and religious beliefs, and socio-economic status as not merely valid social identifiers but those whose memberships are represented by a myriad of both student-led organizations and administrative offices on campus, we are sorely lacking in a unified, disability rights founded presence on this campus. Diversability is the student-run disability awareness club including both disabled and nondisabled students, while Best Buddies Georgetown partners presumably nondisabled students with members of the community with intellectual and developmental disabilities. The Academic Resource Center's primary functions in regard to students with disabilities are to facilitate and coordinate academic and housing accommodations, and to provide occasional programming around academic needs of students with disabilities. The Georgetown UCEDD and the Center on Child and Human Development (GUCCHD) are fairly severed from the main campus, the administration, and the student body, and primarily focus on serving children and youth beyond the gates.

A Disability Cultural Center, established as an administrative office on the same level as the LGBTQ Resource Center, Center for Social Justice, Women's Center, Center for Multicultural Equity and Access, and the Office for Mission and Ministry, would serve as the unifying starting point and foundation for all disability-related organizations and offices across the Georgetown community. A DCC would be able to allocate funding toward student groups like Diversability and Best Buddies Georgetown, as well as partner with the ARC or the GUCCHD/UCEDD, or any academic department or faculty member, in order to provide or promote social or academic programming around disability studies, disability culture, or disability rights. The increased public presence of a DCC would foster a greater sense of affinity for the civil rights model of disability among the student body, rather than allowing the University to become complicit in perpetuating the medical and charity exclusive models of disabilities, which is precisely the mindset that has allowed some students to entertain the idea that Autism Speaks is a good organization to have on campus when in fact it is the farthest from.

To my fellow Georgetown students, I implore you to say no to Autism Speaks and their brand of fear and pity propaganda about people like me. But do say yes to disability rights and to organizations that meaningfully and accurately represent disabled people.

__________

To read more on Autism Speaks, see my letter to the Holy Cross President at Responding to Autism Speaks.

The Dangers of Misrepresentation

Anders Behring Breivik, the Norwegian terrorist gunman who killed seventy-seven people in one day last summer, appeared in court yesterday morning as a psychiatrist declared that he likely "suffers" from Asperger's Syndrome and Tourette's Syndrome. One news article claimed that "Asperger's is a developmental disorder on the autistic spectrum that often is characterised by a lack of empathy."¹ Another article paraphrased the psychiatrist and wrote that "Norwegian mass killer Anders Breivik has a rare, high-functioning form of Asperger's that has left him incapable of empathy or real friendship."²

And so, it is happening again. Those who write such news articles fail to understand the devastating and frightening impact that their words have on our lives. Language is imbued with power as it both reflects and shapes the society in which we live by creating rhetorical constructions that we readily transform into objects of presumed fact. People study this phenomenon in graduate school, and analyze it with the same scientific eye applied to mysteries of genetics and quantum mechanics.

The representation of disability in the media and in popular culture has a profound impact on cultural perceptions and prejudices, attitudinal barriers to equal access and opportunity, service provision, and the individual self-concept of millions of disabled people. Ableism inherent to the language used to represent disability and disabled people readily seeps into attitudes and actions directed toward us, leading to increased stigma, prejudice, bigotry, and discrimination on the basis of disability.

Although even a peer-reviewed paper published as early as 1991³ found no evidence for any correlation between violence and Asperger's Syndrome— further finding that the incidence of violent behavior in those with Asperger's is lower than the incidence in the total population—the media has continually and repeatedly conflated being Autistic with a propensity toward violent or criminal behavior. Because of the fallacious and damaging assumptions still widely held today that Autistics lack empathy, do not recognize that other people have minds, and are incapable of expressing emotions, especially concern for others, it is very easy for the uninformed journalist to hear "autism spectrum disorder" in reference to a criminal defendant and jump to the unfortunate conclusion that serial killers, murderers, rapists, and terrorists must be Autistic because of their apparent lack of empathy for others and any other traits that fit neatly onto a checklist of Stereotypes about Autistics.

Of course Autistic people are capable of committing violent crime, but it is in no way a reflection of their identity any more than when Jews, Blacks, or Muslims commit violent crimes. The neurology of an accused criminal defendant generally has little to do with the actual meat of the accusation and everything to do with ableist attitudes and legal defense strategies. When journalists write with obvious fascination and perverse curiosity about accused violent criminals and when those same journalists attribute every known characteristic of the accused to autism, they are painting a very clear picture for the public— Autistic people are dangerous. Autistic people are violent offenders waiting to happen. Autistic people are the psychopathic murderers of horror movies who are completely incapable of recognizing that other people have lives and minds, and who are therefore capable of committing heinous crimes that any good, sensible, non-disabled person could not possibly commit.

This troubling trend exists not merely in the mainstream contemporary media whenever a particularly egregious case of murder or rape comes to trial, but also in the scientifically questionable practice of posthumously diagnosing prominent historical figures as Autistic— a number of historical criminals, mass murderers, and serial killers have been speculated to have been Autistic for many of the same reasons given when journalists speculate about contemporary criminals, including reasons that lack any basis in reality, such as false stereotypes and misconceptions about Autistic people.

This concept is not new to autism nor is it new to the present age. All marginalized and underrepresented groups have been subjected to the cruel process of othering, much of which is defined by the lengths to which a society will go to demarcate a marginalized group as an Other, not worthy of the same life, not worthy of the same rights as those who can fit into the privileged mainstream. Privilege is everywhere in journalism; it is a hallmark of the successful, well-read news media, and always has been. Most privilege is subtle and unrecognized by those who possess it, but its insidious influence taints journalistic objectivity with the cultural baggage of isms that demonize and dehumanize.

Those who report the news have a duty to report the facts, to make every effort to educate themselves about the dangers of misrepresentation, and to represent the subjects of their writing fairly. Until our journalists learn that their language can have significant and severe repercussions for the lives of the people whom their language maligns and misrepresents, we will continue to face attitudinal barriers across all spheres of society that have been reinforced by the imagery and language used to describe us and construct perceptions of who we are and what our disability means. We will continue to suffer the consequences of dangerous words.

For as long as journalists conclude that every violent criminal must be "an Asperger's sufferer" or "autistic and incapable of empathy," we will be viewed through the lens of aberrations to the moral fabric of society, potential mass murderers and rapists waiting to be unleashed on an unsuspecting public. For as long as journalists conclude that every parent or caregiver who killed an Autistic family member was a loving, caring individual who "snapped" in the heat of the moment because of the stress of caring for a disabled person, we will be viewed as tragedies and burdens to society whose lives are expendable and subject to the caprice of those who are "heroic" enough to tackle the "burden" of taking care of a poor, helpless individual.

For as long as journalists unquestioningly accept untrue and dangerous stereotypes as truths, we will be seen as less than people, less than human, our lives not worth living or protecting, our very existence a barely tolerated abomination. And that is unacceptable.

_________________________________________
¹ "Expert says Norway gunman has Asperger's, Tourette's" ninemsn. 9 June 2012. <http://news.ninemsn.com.au/article.aspx?id=8481127>
² "Mass killer Breivik may have rare forms of Aspergers and Tourette’s syndromes, says Norway's leading psychiatrist" Daily Mail. 8 June 2012. <http://www.dailymail.co.uk/news/article-2156530/Anders-Behring-Breivik-rare-forms-Aspergers-Tourette-s-syndromes-says-Norways-leading-psychiatrist.html?ito=feeds-newsxml>

³ Ghaziuddin, M., Luke Tsai, and N. Ghaziuddin. "Brief Report: Violence in Asperger Syndrome, a Critique." Journal of Autism and Developmental Disorders 21.3 (1991): 349-54. Print.

You are not a burden.

To the person who found my blog by searching Google for "feel like i'm a burden aspergers:"

You are not a burden.

You are a human being, and your life can be rich, full, complete, fulfilling, and meaningful on that basis alone.

You have the same natural right to life and equality and access and opportunity as anyone else does, and anyone who claims that you are a burden is insecure and ableist.

You are beautiful beyond vision, talented beyond measure, intelligent beyond comprehension, and bursting with the amazing capacity to live well and meaningfully and to share your unique perspective and way of existing in the world with everyone you encounter.

You are not broken or defective or lesser. Don't believe anyone who tells you so, whether explicitly or implicitly, because anyone who says that you are less than because your neurology is divergent from a constructed norm is lying to you.

Your neurology is divergent from the accepted "norm" of human neurologies, but that's not a bad thing. You are okay the way you are. Your brain is beautiful.

You may learn differently than your peers, need certain supports, accommodations, or services in order to have full and equal access, think differently than your colleagues, communicate differently than your family members, or experience sensations differently than the other people around you.

But those differences are not bad. They are part of what makes your experience of life unique and beautiful.

You have the capacity for deep, unbounded empathy. You may be moved to action by egregious injustices, and you may be the first to speak up in the face of wrong. You may form brief connections with others that will impact them for a lifetime without you ever knowing, or you may find comfort and trust in only one or two friends over your own lifetime. You may take intense pleasure in solitude, and you may have the potential for wild creative exploits.

You will have struggles that non-Autistics won't face. And you will share some of your struggles with your non-Autistic peers. You may find community among other Autistic people, knowing that there are people with whom you can share space and communicate shared struggles and joys without ever speaking a word.

Your only debt to society is to change the world for the better, even if all that means is a perfunctory encounter with a stranger that leaves another's life a little bit better, another's worries a little bit less daunting and frightening.

You don't owe society anything else.

And you are not a burden to society if you need any form of accommodation to navigate this world. The society in which we live was not constructed around the needs and experiences of people like you and me. In fact, it ought to be the basic, minimum standard of human decency to ensure that you and I have equal access as everyone else. And sometimes that means making accommodations for us.

If a person in a wheelchair wants to enter a building, there should be a ramp long before he ever gets there. And if a Blind person wants to read a book, there should be an audio version long before she ever searches for it. Because that's making the world accessible for everyone instead of keeping the world accessible only for a few.

If I need written, visual instructions with clear deadlines to do my job, there should be no argument about it. That's not me creating a burden. That's me demanding my equal right to full participation. There's no one correct way to do things or experience life. To exist differently in the world does not make you a burden on society.

Society's burden is to compensate, however slowly, for its long train of abuses, disenfranchisement, marginalization, discrimination, dehumanization, and paternalism perpetrated and perpetuated against those who have been denied power, equal rights, and self-determination. That is the burden that society bears.

Yes, Autistics have sex.

Dear people who keep typing things like "can autistic people have sex," "do autistics have sex," "can autists have sex," and "is it possible for people with autism to have sex" into Google and then clicking on my blog,

Yes, Autistics have sex, can have sex, and can want to have sex.

Some Autistics actually get married and have children through biological means, otherwise known as having sex. Some Autistics are gay, lesbian, bisexual, transgender, genderqueer, or pansexual, and they have sex too.

(Yes, some Autistics don't have sex or haven't had sex or don't want to have sex, but the reasons for that are as varied and diverse as for non-Autistics who don't have sex or haven't had sex or don't want to have sex.)

Being Autistic does not mean lacking the ability to have sex.

And no, asking Autistics if they've ever had sex or can have sex is not okay. It'd be inappropriate and rude to ask a non-Autistic, seemingly "normal" person if he, she, or xe has ever had sex or can have sex, and it's equally inappropriate and rude -- not to mention incredibly offensive and insulting -- to ask an Autistic if he, she, or xe has ever had sex or can have sex.

And for the sake of everything green on the earth, please stop Googling "can autistics have sex." Please.

Sincerely,

An annoyed Autistic blogger

***

FIVE YEARS LATER (17 January 2018).

I am adding an FAQ to this post because some people are definitely just googling out of innocent curiosity (though that doesn't take away from the fact that many people ask in not very innocent and actually outright malicious ways):

Content/TW: Mentions of sexual abuse and violence follow.

Q. Is it possible for autistic people to have sex?
A. Yes.

Q. Is it possible for autistic people to have romantic and sexual relationships?
A. Yes.

Q. Is it possible for autistic people to get married?
A. Yes.

Q. Is it possible for autistic people to fall in love?
A. Yes.

Q. Is it possible for autistic people to date?
A. Yes.

Q. Is it possible for autistic people to date non-autistic people?
A. Yes.

Q. Is it possible for autistic people to date other autistic people?
A. Yes.

Q. Have you had sex?
A. You're an internet stranger, so why would I answer that question?

Q. Has [specific other autistic person] had sex?
A. I don't know. Maybe yes. Maybe no.

Q. Can autistic people choose to be celibate?
A. Yes.

Q. Can autistic people be asexual, gray-asexual, or demisexual?
A. Yes.

Q. Can autistic people be aromantic, gray-romantic, or demiromantic?
A. Yes.

Q. If an autistic person is on either the asexual or aromantic spectra, is that because they are autistic?
A. Not necessarily. Being autistic does not inherently mean a person will be either asexual or allosexual, or on the aromantic spectrum or not. For many autistic people who are both asexual and autistic or aromantic and autistic (or aro, ace, and autistic), there is no connection between autism and asexuality/aromanticism. For other autistic people who are asexual and/or aromantic, there is a connection.

Q. Is it safe for my autistic adult child to have sex?
A. If you are the parent of an autistic adult, the best thing you can do to support them is to make sure they have access to consent-based sex education and information about different types of protection so they can make informed decisions about safer sex.

Q. Do autistic people masturbate?
A. Some autistic people masturbate.

Q. Can autistic people masturbate?
A. Yes.

Q. If someone is sexually interested in an autistic person, wouldn't that make them a pedophile?
A. Not unless the autistic person is a child. If an adult (non-autistic or autistic) is sexually interested in an autistic child, they are a pedophile. If an adult is sexually interested in an autistic adult, they are not a pedophile.

Q. If someone is sexually interested in an autistic person, wouldn't that make them a predator?
A. If they exploit, manipulate, or abuse the autistic person, or otherwise violate that person's consent, then yes. But a non-autistic person is not a predator simply for being sexually interested in an autistic person.

Q. Can autistic adults meaningfully consent to sex?
A. Yes, and we can also decline to consent or withdraw consent once an interaction has started.

Q. Is all sex with an autistic person predatory and therefore sexual abuse, sexual assault, or rape?
A. If a person forces sexual acts on an autistic person against their will, that is sexual abuse, sexual assault, or rape. If an autistic person consents to sexual acts with a specific also-consenting person (or more than one consenting person) at a particular time, then all involved are simply having a good time.

Q. I know an autistic person who masturbates in public. What do I do?! How do I stop it?!
A. Teach autistic people about boundaries. If you are the parent or teacher of this person, show them that it is OK to masturbate if they are in private in their own room or a bathroom with the door shut and locked (if there is a lock). Teach them that it is never OK to masturbate in front of other people unless they consent first (like in mutual masturbation). You should also make sure that the autistic person isn't actually doing something else that might look like masturbation but isn't -- like scratching their anus because they have gastrointestinal issues and perhaps irritable bowel syndrome. If that's the case, you can also teach the person that other people might wrongly assume they are masturbating and they might still want to seek a private place to scratch.

Q. Are there any resources for teaching autistic people about sexuality and relationships?
A. Yes, there are several. For example, check out the following just as a starting point:

• "Relationships and Sexuality: A Handbook for and by Autistic People" edited by Elesia Ashkenazy and Melanie Yergeau 
• "Neurodivergent Sexuality" by Aegyo Kawaii
• The Autism Spectrum Guide to Sexuality and Relationships: Understand Yourself and Make Choices that are Right for You by Emma Goodall

Q. I dated an autistic person once and they were a complete asshole. Are all autistic people complete assholes?
A. No ... We're individuals, which means that some of us are assholes -- and some are far worse than simply being assholes -- and plenty of us thankfully are not.

Q. If an autistic man keeps asking me on dates/groping me/sexually harassing me/pressuring me into sex/standing too close to me/making other sexual comments to me, even though I have told him to stop and that he is violating my boundaries, do I need to cut him some slack because he is autistic and doesn't understand social cues like neurotypical people?
A. NO. Being autistic is NEVER an excuse for sexual harassment or any other form of sexual abuse or sexual violence. He knows. He is choosing to be an asshole and to increase stigma against all the non-asshole autistic people in the process. (Autistic men also do this to other autistic people, especially those who either are or are assumed to be women, and it is still not OK. Also autistic women and non-binary people can do this too, and it is still not OK.)

Q. Can autistic people impregnate their partners/become pregnant?
A. Yes.

Q. Should we allow autistic people to impregnate their partners/become pregnant?
A. Autistic people should have the same reproductive choices and freedom as all people in society, including the ability to choose to become biological parents and the ability to choose to use different forms of contraception and birth control, and the ability to choose to either carry pregnancies to term or to abort them.

Q. OK, but isn't it a bad thing if autistic people are reproducing children that are also likely to be autistic?
A. No, unless you are in fact a proud support of eugenics, in which case, why the hell are you on my blog?

Q. I just typed a question into the internet. Why are you being so rude?
A. Because a lot of people brazenly demand personal and invasive details about autistic people's sexual lives/histories, especially when they don't even know us personally, and they often do so in a really condescending way because they're assuming that no autistic person could ever possibly want to have sex or be capable of having sex. So even if you personally didn't mean anything offensive or mean by it, plenty of other people have, and being asked the same thing repeatedly gets really annoying and frustrating. In any case, it's still probably better that you asked the internet instead of asking a random autistic person you know.

Q. Can I ever ask a specific autistic person if they have sex?
A. Only if you are actually propositioning that specific person because you would like to have sex with them. Otherwise it's really rude.

Q. Does being autistic affect how autistic people have sex?
A. It depends on the person. Some autistic people might have to work around tactile sensory sensitivities to have enjoyable and pleasant sex. Other autistic people might specifically be kinky and do BDSM because their specific kinks match their sensory-seeking needs. Some autistic people may need to be very explicit during sex about what they are enjoying or not enjoying. Some autistic people may need their partners to only use deep pressure and avoid light touches (or the opposite). If your romantic and sexual partner / datemate / one-night stand / scene partner / sex worker happens to be autistic (and you know this), feel free to ask what they like/dislike and what is absolutely off-limits (but you should try to do this anyway regardless of neurotype).

Q. Will you have sex with me?
A. No.

Q. I am lonely man with high-functioning Asperger's desperate to find Aspie girlfriend/wife. You are beautiful and would be perfect. Please contact me; we are meant to be together.
A. NO.

What they do to us is intolerable!

TASH New England's Better Supports, Better Lifestyles in Today’s Challenging World Conference on Friday 11 May 2012 at the College of the Holy Cross in Worcester, Massachusetts. From left to right: Emily Titon, Gregory Miller, and me.

The Friday morning session was called "What They Do to Us is Intolerable! A Discussion About Restraints, Seclusion Time Outs, and Aversives," and it was organized by Emily Titon, an amazing Autistic woman who in addition to serving on the boards of TASH national and TASH New England and the Rhode Island Advocates in Action, has also co-founded the Rhode Island chapter of the Autistic Self Advocacy Network.

(I was informed that I was co-presenting that this session after Emily had already told the conference organizer.)

I hadn't expected to be discussing the history of the Judge Rotenberg Center and its use of electric shock, food deprivation, prolonged restraint, and fear as forms of "treatment" while standing less than six feet away from the former JRC employee who has written a 250,000+ signature strong petition demanding an end to the electric shock "treatment." Gregory Miller is a man with the courage to speak against egregious violations of human rights even in the face of a lawsuit brought against him by the JRC's powerful army of lawyers and backed by the JRC's money.

At $250,000 each year per student, the JRC's revenue allows the institution to fund lobbyists, lawyers, parents, and staff to flood public legislative and regulatory hearings with brainwashed testimony built on a castle of lies and half-truths. That same fat pocketbook also gives the JRC the musclepower to effectively silence any would-be whistleblowers and prevent the truth about their methods from reaching the public.

But the walls protecting the JRC are slowly crumbling. While Massachusetts has repeatedly failed to pass legislation banning the use of electric shocks, we've begun to take small steps forward -- toward the ultimate and permanent closure of the institution.

New York, the state that provides the vast majority of the JRC's residents, passed legislation banning the use of electric shock on any residents from New York, though people from New York still comprise the majority of the JRC's students.

Matthew Israel, the JRC's founder, was forced to resign last year in a plea bargain after he faced perjury charges and charges of intentionally destroying evidence in a 2007 incident that resulted in the repeated shocking of two students who hadn't even engaged in dangerous or self-injurious behavior.

The Massachusetts Department of Developmental Services enacted into law regulations that ban the use of aversives, including electric shock, on any students admitted after September 2011, though the regulations do allow for the use of electric shock where it was included in court-approved behavior plans created before September 2011.

The United Nations Special Rapporteur on Torture decried the JRC's practices as torture after receiving a report from Disability Rights International.

The U.S. Department of Justice's civil rights division opened an investigation into the JRC in December 2010, though the investigation has produced little tangible.

And the Massachusetts Senate has repeatedly passed a ban on aversives, although this ban has never passed through the Massachusetts House.

Let's also not forget that first California, and then Rhode Island, prohibited the use of aversive interventions favored by Matthew Israel, in whose care at least six students have died as a direct or indirect result of the aversive intervention program, resulting in the JRC's final relocation to Massachusetts where the facility still stands today.

Last month, in a civil trial against the Judge Rotenberg Center, a judge unsealed graphic video footage of then-eighteen Andre McCollins receiving thirty-one electric shocks after refusing to remove his jacket. Footage of that video has received hundreds of thousands of views on YouTube.

Shortly afterward, Greg Miller, the former JRC employee who joined Emily and I at the TASH New England conference a week ago, wrote a petition demanding the end of electric shock aversives, which has received over 250,000 signatures to date. The JRC has decided to sue him in an attempt to silence him. They've accused him of defamation and making false statements, as well as being a disgruntled employee who was fired, when in fact, Greg resigned and has documentation of his resignation. Greg has made several media appearances in the last two weeks in the hopes of galvanizing the public further to action against the JRC.

Today, Massachusetts State Senator Brian Joyce, who actually represents the district where the JRC is located, filed two anti-aversives amendments to the budget that will be debated starting this coming Wednesday. The first of the amendments would solidify the DDS regulations promulgated last year by codifying them and giving further protection against potential suit. The second amendment is a complete ban on aversives, which the Senate has previously passed on multiple occasions. Massachusetts residents have until Wednesday or so to urge their State Senators to co-sponsor or support the anti-aversives amendments before they go to the floor for debate.

Also in this past week or so is the announcement of legislation jointly filed by New York Senator Martin Golden and Assemblywoman Joan Millman (S6294A-2011 and A9084A-2011) that would cut all state or public funding to any school, institution, or program that uses any form of aversives. Electric shock is specifically named because the legislation is in fact targeted at the JRC. As the majority of the JRC's residents are from New York, passing those bills could permanently damage the JRC's primary source of revenue, and possibly lead to the institution's closure because of inability to support itself financially.

In the wake of Andre's trial against the JRC and Greg's petition, several disability rights activists and community stakeholders have formed the group Occupy JRC, and are planning a 2 June 2012 rally in Canton near the JRC itself, at which Greg Miller will be one of the speakers along with disability rights advocates Senator Brian Joyce, Kat Whitehead (Community Alliance for the Ethical Treatment of Youth), Dan Fisher (National Empowerment Center), Ari Ne'eman (Autistic Self Advocacy Network), Laurie Ahern (Disability Rights International), Daniel Hazen (Voices of the Heart), and Joseph Sitinbull (Helping Others to Promote Equality).

Yet while cautiously hopeful that the JRC is in fact under threat of imminent closure due to the increased publicity around its use of torture, and mounting campaigns from both government and grassroots opposition to its practices, it is imperative to remember that thousands of people with disabilities continue to languish in institutional facilities and nursing homes across the nation where abuse and neglect come in many forms.

Cuts to funding for public service providers have resulted in unnecessary bureaucratic hurdles to full integration and meaningful community inclusion, meaningless day-habilitation programs, denial of necessary medical attention, and deplorable conditions inside institutions and group homes. Schools routinely subject students with disabilities to all forms of restraint and seclusion as mechanisms for "dealing with" students whose behaviors and learning styles diverge too much from the norm to be acceptable.

Our society has built a culture of complete lack of empathy for those who diverge from norms or typicalities, with the bricks of dehumanization and othering laying the foundation for a world in which these types of abuse are perpetuated.

Do you remember the Autistic boy inside the bag?

If you do, you'll be nauseated by what you're about to hear.

Andre McCollins, a teenager with a disability, was asked to take off his jacket by staff at the Judge Rotenberg Center. When he refused, staff electric shocked him and he tried to hide under a table. They dragged him out and tied him face-down to a restraint board where he was kept for seven hours without a break, and shocked a total of thirty-one times. All but one of those electric shocks were for tensing up or screaming. He was hospitalized with acute post-traumatic stress, and his mother couldn't even use a cell phone or TV remote around him, because they look exactly like the shock devices staff use.

Another victim of the JRC was a girl with cerebral palsy who was also nearly blind. She was electric shocked for reaching for a staff member's hand.

The Judge Rotenberg Center in Canton, Massachusetts is a residential facility for children and adults with disabilities, including developmental, intellectual, and mental disabilities. They claim to "save lives" with the electric shocks, but it doesn't take an expert to realize that what the JRC really does is torture in the name of treatment. Not one other institution or program in the United States uses electric shock aversives.

I am Autistic, and watching the video of Andre's torture that aired in court last month terrified me, because I know that the people in the JRC are people like me -- people with disabilities -- and it's the fact that they have disabilities that's being used as an excuse for torture and abuse. I know one woman who considered sending her Autistic son to the JRC, and I have an adult Autistic friend who was nearly sent to the JRC. I'm horrified that the JRC is still in operation, especially because I live in the state where the JRC operates, and I want to see the JRC closed.

What happened to Chris Baker in Kentucky is a result of the same attitudes that allow the JRC to continue its operations -- the attitude that people with disabilities like Chris, Andre, and me are inherently broken, diseased, or defective, and that it's therefore permissible to treat us in ways that wouldn't be legal or acceptable to treat anyone without a disability.

Former JRC staff member Gregory Miller, who witnessed their techniques in person, has written a petition demanding the end of the electric shocks at the JRC. If you're like me and reading this sickened you, then take a look at the video of Andre's torture and then sign the petition to demand an end to the torture.

Greg is fighting the same fight that I am -- the fight to ensure RESPECT for all people with disabilities, especially in the name of treatment, therapy, or intervention.

Thank you,

Blessings and peace,
Lydia

--

This was originally intended to be an email sent through the Change.org email petition update system, but the system appears to have malfunctioned. So I'm posting this here instead. Please forward this page by email, Facebook, Twitter, Tumblr, or wherever to anyone you know.

The Problems with "Asperger's"

One of the most common questions I have ever heard or read online is, "Are Asperger's and autism the same thing?" Of course, there are nearly infinite iterations of this question, asking what the "differences" are between Asperger's and autism, and whether Asperger's is a subset of autism versus a mild form of it, or unrelated entirely. (There is not a general, broad-based consensus on the answers to these questions.)

The only current diagnostic difference between receiving a diagnosis of Asperger disorder or Autistic disorder is that in order to be diagnosed with Asperger disorder, an individual must have "no clinically significant general delay in language."¹ There is no other difference in diagnostic criteria, but that one difference that does exist is not only negligible but scientifically invalid and nonsensical. (This, of course, does not consider the very viable argument that autism should not in fact be included in the DSM, which is a manual of psychiatric disorders according to its own title, as autism is not a psychiatric disorder but a developmental disability.)

If all Autistic people have innate differences in communication and social interaction -- primarily with expressive language rather than receptive language -- then it does not matter at what age the Autistic person develops actual speech. All Autistic people will have neurologically divergent communicative abilities, whether for informative or social purposes, throughout the life span. Besides, it is acknowledged in nearly every publication discussing "Asperger's" that people who receive that diagnosis have communication and social problems throughout their lives resulting from their information processing differences.

Attempting to create an artificial divide between people who are "just Asperger's" and "actually Autistic" not only contributes to divisiveness and disunity among the Autistic community, but also does us a disservice by communicating false ideas to the world beyond our own community. As an Autistic friend of mine recently observed in a note on Facebook, the proud use of terms like Aspie and Aspergian is frequently associated with the so-called Aspie supremacists -- those who believe that they are genetically or otherwise superior to non-Autistics on the basis of the Asperger's diagnosis. (Some of the same endorse the rather absurd neanderthal theory of autism, that Autistics have more neanderthal genes than non-Autistics. Others buy into the inaccurate and harmful high and low functioning dichotomy.

The friend who authored the note encouraged Autistic adults and allies to avoid using the "Asperger's" terminology except when discussing the specific diagnostic label or its history. I agree with him.

Earlier today, I was interviewed at the Autism Women's Network weekly radio show along with three other people, one of whom repeatedly used the term Aspie and described some Autistics as from "the higher-functioning end of the spectrum" (though she did later question the validity of this false dichotomy.) I frequently read writings or postings from other Autistic adults in the community who prefer to describe themselves as Asperger's, Asperger autistic, Aspies, Aspergians or Aspergerians, or "mildly autistic." (When I was first diagnosed, my parents explained the diagnosis as "a mild form of autism." This is apparently common.)

These terms reinforce several false and dangerous notions:

1.) They reinforce the stereotype of autism rights or neurodiversity activists and advocates as Aspie supremacists. Most of us are not Aspie supremacists. We seek equity -- that is, equal access and opportunity as our non-Autistic peers across the lifespan in all facets of life -- acceptance, and respect, but not a new order with Autistics ruling over the poor non-Autistics.

2.) They serve to alienate those of us who do not use that kind of terminology, and those who have never received the "Asperger's" diagnosis, by separating one group of Autistics from another.

3.) They support the idea that some Autistics are fine as they are while others should be cured or fixed, by suggesting that it is okay to be Aspie or Asperger's while allowing for "autism" alone to be a negative, devastating experience. This creates a false distinction between "types" of autism. Some Autistics may be more disabled or more visibly disabled than other Autistics, but there are not different "types" of autism or Autistics outside other conventional types of diversity and individual experiences.

4.) They deny the disability experience of autism by creating connotations that align with the Aspie supremacist notion of "Asperger's autism." While the social model of disability is generally constructivist, it is extremely dangerous to deny that Autistics experience disability, including those who may be more mildly or invisibly disabled or able to "pass."

Asperger's is a term that carries far more baggage than it should, and until we can academically and objectively dissect its use and history, continued emphasis on this label and its associated labels will only harm the community. This is why I cringe when I hear people use the terms "Aspie" and "Asperger's," because every time someone insists on these types of terminology, that person emphasizes and reinforces some very dangerous ideas.

We are at a point where our community needs to foster as much unity and solidarity as possible, and one of the ways in which we can do this is through the language we use to refer to ourselves both within and outside the community. I do now and always have supported the right of individuals to determine what they wish to be called and how they wish to refer to themselves when using identifiers, but I urge those members of the community who are reluctant or less frequent to identify themselves as Autistic to consider the ramifications of this single, unifying identity label.

Using Autistic is a symbol of solidarity with all other Autistic people, because it emphasizes our similarities down to our very neurological wiring rather than calling attention to superficial or socially constructed differences in our apparent abilities. It makes it harder for those opposed to neurodiversity to draw on the high-low functioning dichotomy or the differences in criteria for diagnostic labels, because the word "Autistic" is all-encompassing. Autistic refers to any individual whose neurology is divergent from the typical range of variability enough to cause core characteristics of autism in information processing differences. It pays no attention to specific abilities and challenges, as these vary in every group of people. It pays no attention to specific diagnostic labels, because labels themselves are a social construction as essentially invalid as monetary value.

Autistic is an identity label that reclaims the notion that it is okay to be Autistic in any form, with any diagnostic label, with any manner of visibility of disability, with any severity of disability -- and that we are of equal value and significance as Autistics both individually and as part of the community.

--

¹American Psychiatric Association. (2000). "299.80 - Asperger disorder" Diagnostic and statistical manual of mental disorders (4th ed., text rev.).

End the torture. Make this go viral.

Trigger Warning:
Torture and abuse on video.

--

For decades, the Judge Rotenberg Center in Canton, Massachusetts has been torturing and abusing people with disabilities in the name of treatment. Residents are subject to electric shocks, food deprivation, prolonged restraint and seclusion, and forced witness of these same tactics used against other residents.

This video of Andre McCollins, then-eighteen, who has behavioral and mental health issues, has been sealed by the courts for the last eight years. Yesterday, it played in open court during his trial against the Judge Rotenberg Center.

Make this go viral.

Download the video to your hard drives; upload it elsewhere; share the links.

The public must see what the Judge Rotenberg Center is doing. Their experts claimed that the public would not understand the content of this video without "proper context." There is no context that justifies the use of torture against anybody ever. The public has not merely a right but a responsibility to watch this video and share it everywhere.



The majority of the Judge Rotenberg Center's residents come from New York, which has banned the use of electric shock on its residents. Massachusetts passed regulations last year that prevent the use of the electric shocks on any new admitted resident. But the Judge Rotenberg Center has survived decades of attempted legislative efforts to ban the shocks completely, and it is still fighting every small step taken to end its practices of torture and abuse.

This is not electrostatic therapy that has been scientifically proven to help with symptoms of depression, bipolar disorder, and related disorders.

This is not a "treatment" with any long term efficacy. Some of the residents at the JRC have been there for over ten years, and they still have the same behavioral problems as when they entered.

This is not "the only treatment that works." The JRC likes to make this claim, and it is wrong. There are programs at other institutions across the country that serve the same population with the same challenging behaviors -- self-injurious and destructive -- that do not use torture and abuse and that do have proven long-term efficacy in reducing and eliminating dangerous behavior.

This is torture and abuse.

Public outcry is often the impetus for change. If millions of people demand the closure of the JRC, can their millions of dollars in lawyers and lobbyists stand up to public outrage?

Make this go viral.

Avoiding Tokenism

Tokenism is defined in the dictionary as "the practice of making only a perfunctory or symbolic effort to do a particular thing, esp. by recruiting a small number of people from underrepresented groups in order to give the appearance of sexual or racial equality within a workforce." It is a sadly common practice in the world of autism, where Autistic people are frequently token Autistics rather than participating in an activity or leading an organization in any meaningful way.

These are signs that an Autistic is a token. Be aware of them and avoid them!

1. There are no other Autistic people on a board, council, or committee.
   If an organization, council, or committee represents, governs, advises, or leads an entity whose primary focus is on autism related issues, serving or supporting Autistic people, or representing the autism community in any way, there ought to be at least a few Autistic people serving on the board, council, or committee. In fact, there should be as many Autistics as possible, given that purpose. (Wouldn't it be odd if an organization serving the LGBTQ community had only one or no LGBTQ people in the leadership?)
   
   
2. The Autistic person has no real responsibilities or duties, and is not expected to contribute substantively.
   This is simply more evidence that the Autistic person is there solely so that those in charge can say that they have an Autistic person participating or in a leadership position. This can happen especially when the Autistic person is given an important-sounding title, such as "Vice Chair" or "Co-Executive Director" or "Program Coordinator." The Autistic person in this position is frequently assumed to be incapable of carrying out actual responsibilities. Conversely, the Autistic person may be actively impeded in attempting to take on responsibilities.
   
   
3. The Autistic person is not expected to express opinions, and in fact is expected to comply quietly with the organization's official platform.
   This happens when an Autistic person is actively or passively prevented from expressing his or her opinions or ideas, particularly of the organization that has included or appointed him or her, and expected to go along with whatever the organization's leaders say or do without protest, even if they do or say something that the Autistic finds offensive, hurtful, demeaning, or ineffective.
   
   
4. The leader(s) admits that the Autistic person was included or appointed solely or primarily because he or she is Autistic and not because he or she was otherwise qualified to serve or work in that position.
   This is also called "bad affirmative action." Yes, if it's about autism, you should have Autistic involved at all steps of the process because they are Autistic, but people should always be qualified to be doing what they are doing. If we're talking about a scientific research review board that reviews papers about autism-related studies, the Autistics involved should have a scientific background of some sort. (If they're community grant reviewers, that's a different story.) If we're talking about the administration of an autism-specific school, the Autistics involved should either have attended such a program in the past or have an educational background. If we're talking about an executive officer position in a nonprofit serving Autistics, the Autistic hired should be otherwise qualified to be in an executive position. We are not identical people who can be substituted for each other like mass-produced clones.
   
   
5. The Autistic person is excluded from the decision-making process or main working process.
   This defeats the purpose of meaningfully including Autistic people altogether. If an Autistic serves on a board or council or committee, he or she should have as much say in the decision or working processes as anyone else.
   
   
6. There are no plans or intentions to include or appoint other Autistics.
   When this happens, it is clear that the Autistic included or appointed is a token representing the bare minimum of effort required to appear to have included Autistic people.
   
   
7. The Autistic person is treated in a condescending and patronizing manner by colleagues, and this is considered acceptable and normal.
   This is also called workplace bullying, hazing, and ableism. Don't talk to us in a baby voice. Don't praise us for every ordinary thing expected of everyone, like showing up on time, putting things in the recycling bin, or finding a parking space. Don't treat our opinions and ideas as meaningless fantasies. Respect us because we are people.
   
   
8. Any leader in the organization treats the inclusion or appointment of the Autistic person as an, "oh how sweet" or "oh how nice" moment.
   See above.
   
   
9. The inclusion or appointment of the Autistic person is made out of pity.
   See 4 and 7.

Stop killing us.

Trigger warning: Extensive discussion of murder of disabled people.

--

Stop Killing Us

I don't know why we need to repeat this so often, but it seems we repeat this in vain.

This past Saturday, four year old Daniel Corby from San Diego, who was Autistic, was drowned by his mother. (She was thankfully arrested.)

That was March 31. March 30 and March 31 were days of mourning. Self-advocates and allies organized vigils in eighteen cities across the United States in memory of disabled people, many of them Autistic, who were murdered by family members or caregivers. Their names were read.

But this keeps happening. Over and over and over again.

Are our lives really worth that little?

Has the media really painted such a stark picture of how tragic it is to be Autistic?

Does our society really have this ingrained attitude that it's okay to kill us?

The answers are apparently yes.

These should be prosecuted as hate crimes, because the victims are always murdered because of a protected status -- disability. In fact, being disabled is the sole or primary motivating factor in their murders. Were they not disabled, they would not have been killed. Period.

And the media continues to glorify and justify and sympathize with their murderers. Were any other person murdered by a family member, the public outcry would be enormous. In the Caylee Anthony and JonBenét Ramsey cases, the media vilified the murderers -- in Caylee's case, her mother was convicted in the court of public opinion after her legal acquittal, and in JonBenét's case, the family was later partially exonerated. Whenever the victim is not disabled, the media and the public heap the blame on those known or believed to be responsible.

Yet in the cases of disabled victims, the media does not speak up for the victim. Even when the killers have confessed or when it is obvious who the murderers were, the media pours sympathy onto the murderers. Articles about these cases emphasize how stressed the murderers were with the burden of having a disabled family member. They emphasize how difficult the victim was to live with and how the victim's deficits and challenging behaviors drove the murderer to the edge.

In short, society blames the victim and exonerates the perpetrator.

This is the same thing as blaming a woman for her rape because she wore a short skirt or had a low neckline on her shirt. It is the same thing as blaming a Sikh man for his assault because he wore a turban. It is the same thing. There is no difference.

And each and every time society excuses the murder of a disabled person, our lives become worth a little less. And it becomes easier for the next murderer to kill one of us, knowing full well that the likelihood of receiving an extremely lenient sentence, possibly with little jail time if any, is very high. And it continues.

It continues.

And one by one, we die.

"Stop killing us," we say. But our voices are so insignificant and powerless that it is no trouble at all to ignore them. You don't even need to acknowledge that our voices exist. All you need to do is shower heaps of sympathy for people who commit murder, and you can walk away with your conscience clear while we suffer in silence and wait for our turn at the chopping block.

Stop killing us is the last, desperate plea of people who have been backed into a corner from which we cannot escape. We have been reduced to adenine, cytosine, guanine, and thymine compounds that can be easily and quickly composted. Our humanity has been stripped to its most basic nucleic acids, so that we cannot even claim to be fellow human beings anymore. And we are to be grateful for being allowed to exist, for being allowed to be a burden to our societies and communities, so long as we remain still and silent like the well-behaved, compliant Others we have been made to be.

Responding to Autism Speaks

Earlier this week, I received an email from the President of the College of the Holy Cross, Philip L. Boroughs, S.J., who is also the former Vice President for Mission and Ministry at Georgetown University. It turns out that the co-founder of Autism Speaks, Bob Wright, is a Holy Cross alumn, and Holy Cross has planned on supporting Autism Speaks through the Light it Up Blue campaign this April. In the same email, I was asked whether I would commit to advocating for Georgetown to participate in the same campaign.

I wrote a response to that email, which appears to have been taken into serious consideration, and I am hopeful that Holy Cross will decide to put its time and effort into more worthwhile and constructive efforts to support the autism and Autistic communities. This is my response to the email I received. After reading this, please consider writing polite and diplomatic letters to the College of the Holy Cross urging them to develop and participate in more positive and constructive initiatives supporting the Autistic community. If you write a letter, focus on the positives -- the response that I've received was positive, so more positive prodding may prove to be beneficial, whereas angry letters may hurt the potential to produce something constructive.

TASH New England hosts its annual conference at Holy Cross as well, so please urge them to support organizations like TASH or the Autistic Self Advocacy Network or the Autism National Committee or Autism Network International.

--

Dear Father Boroughs,

Thank you for writing. I appreciate your commitment to supporting the cause of advocating for Autistic people and the issues that affect us, and I strongly support your willingness in reaching out to those of us with a vested interest in autism issues. As Dr. Lord may have told you, I am Autistic myself, and am deeply involved with the autism and Autistic communities as a self-advocate, that is, as an Autistic person who is also involved with advocacy.

I realize that it's probably too late to cancel "lighting it up blue" for Autism Speaks, but I am very disappointed to see that you have chosen to support an organization that nearly all Autistic adults do not support and cannot condone. I cannot condemn Autism Speaks strongly enough.

Autism Speaks routinely excludes Autistic people from discussions about us, and to date, has not one single Autistic person in its leadership either nationally or locally. This goes against the principles of the disability rights movement, where organizations representing people with disabilities have many people with disabilities represented in their leadership, if not running and directing the organization altogether. In response to criticism over this, Autism Speaks appointed one Autistic adult to one of their advisory boards two years ago, but this is one Autistic person on a board with twenty-nine other people, none of whom are Autistic. There remain no Autistic people involved in the actual administration and direction of the organization.

Autism Speaks has repeatedly used inaccurate and offensive material as marketing and fundraising tactics, including their public service announcements. One of their earlier PSAs, "Autism Every Day," featured their former Vice President Allison Tepper Singer on camera saying that she considered driving off a bridge with her three year old Autistic daughter and that the only reason she did not do so was because she had a non-Autistic child as well waiting for her at home. Her Autistic daughter was in the room when this was said, and this was aired as a PSA. In a more recent PSA, "I Am Autism," images of Autistic children and their families are set to a voiceover claiming to "be Autism," and saying things like, "I will destroy your marriage. Your child will never have friends."

Autism Speaks's ultimate goal is to cure autism and create a world where Autistic people like myself no longer exist. Most Autistic adults and youth strongly oppose the idea of "curing" ourselves because we do not believe that we are defective, broken, diseased, or in need of being fixed. Having a disability does not mean that there is something wrong with us. Yet because Autism Speaks does not represent Autistic people or speak for us, they can put their efforts into looking for something that most of us do not want. This includes Autistic people who are visibly disabled, severely disabled, and non-speaking, as well as Autistic people who do not present as very disabled.

Autism Speaks claims to provide family and community services, but in fiscal year 2010, they provided about $50,000 in grants for family and community services, while giving over $16,000,000 in grants for research, nearly all of which was to find a cure for autism. There are critics of Autism Speaks even among those who do want a cure for autism -- whether or not one wants a cure for autism, there is not a cure now, and much of that money could be going to much better activities, such as research on pragmatic topics and issues that affect Autistic people now, or providing services and supports for Autistic children, youth, and adults.

Additionally, Autism Speaks implicitly and tacitly allows dangerous misinformation about the science of autism to spread, such as the repeatedly debunked claim that vaccines cause autism. People in the anti-vaccine movement have caused numerous outbreaks of preventable and nearly-extinct diseases in the United Kingdom and the United States for fear that vaccines will cause their children to be Autistic. Children have died because of this. Former Vice President Allison Tepper Singer, who appeared in the "Autism Every Day" public service announcement, actually resigned from Autism Speaks because they refused to publicly and unequivocally take a stance against such false and dangerous scientific misinformation. (That does not, however, excuse the fact that she has to this date refused to apologize for the statements she made in that video.)

The majority of people do not know that there is such controversy with Autism Speaks because most people assume that any organization dealing with autism must be doing good things for the community. Bob and Suzanne Wright are very wealthy people with many connections, which is certainly one of the reasons that Autism Speaks has grown to be so influential and powerful in the community. Most people who support Autism Speaks are unaware of how offensive and demeaning their practices and language are to actual Autistic people. At the same time, organizations run primarily by Autistic people or that meaningfully include Autistic people, tend to be much less well known and have much less public attention.

As I said before, I am deeply appreciative of your interest and commitment in engaging the autism and Autistic communities and supporting efforts to raise awareness of the issues that affect us, but I cannot and never will be able to condone the support of any campaign launched by Autism Speaks.

"Light it up blue" does nothing to help Autistic people or bring attention to the most important issues facing our community. The color blue in relation to autism can only be seen in Autism Speaks's logo -- a blue puzzle piece -- and has nothing to do with us. We prefer to be thought of as people, not puzzles. This campaign is offensive and alienating to us rather than supportive of us. I strongly encourage you to consider alternative means of supporting the autism and Autistic communities, such as hosting roundtable discussions with Autistic self-advocates and our allies, sponsoring talks by leaders in the autism rights movement, showing documentaries such as Loving Lampposts: Living Autisticor Wretches and Jabberers, or adding material about autism rights and neurodiversity into any disability studies coursework on campus.

Thank you again for writing and reaching out to me, and please don't hesitate to contact me if you have any further questions or concerns. I hope to hear back from you.

Blessings and peace,

Lydia

Who gets to be an ally?

Like most words that see common use in the autism or Autistic communities, "ally" has its own share of baggage. People who call themselves "allies" have bullied, belittled, or derailed Autistic people, while other people who call themselves "allies" are guilty of overt ableism, marginalizing Autistic people, or taking over conversations where Autistic voices should be at the center.

So who gets to be an ally?

You are not an ally if you dismiss an Autistic person's experiences because of your perceptions of that person's abilities and challenges.

You are not an ally if you insist that your voice and your experiences are more important, accurate, or necessary than those of an Autistic.

You are not an ally if you refuse to acknowledge the validity of an Autistic person's opinions or ideas.

You are not an ally if you routinely attack or dismiss an Autistic person's opinions or ideas.

You are not an ally if you use repeatedly use language that an Autistic person has told you is offensive or triggering, or if you insist on using that language anyway.

You are not an ally if you patronize or talk down to an Autistic person.

You are not an ally if you insist that we or your kids are broken, diseased, or defective.

You are not an ally if you insist that an Autistic adult is "not like your child" and therefore can't speak to any of your child's experiences or perceptions.

You are not an ally if you insist that an Autistic is simply too angry or too emotional or unable to empathize.

You are not an ally if you routinely take the self-expressions of Autistic people as personal attacks on you, and make yourself the victim of hurt feelings in any conversation.

You are not an ally if you turn the focus of the conversation back to you and your feelings, especially if that was never the purpose of the conversation.

You don't get to be an ally by calling yourself one.

And you don't get to be an ally because you think you're one.

We and we alone get to determine who our allies are.

Many of our allies were anything but when they entered the world of autism. Others intuitively understood the way it is, and knew what it meant for our community to be marginalized. Some of them are parents and others are friends. Some are professionals, and some had no direct connection with autism until they met one of us -- online or in person.

Most of our true allies aren't there looking for recognition or fame for themselves. That's another marker of a good ally. We give it to them anyway in blog posts and on social media and in private discussions about who are allies are, because it's so very rare to find good allies. (In fact, in November 2011, the Autistic Self Advocacy Network awarded its first Outstanding Ally Award to Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disability Services.)

Most of our allies don't go around insisting that they are allies and shoving that word down everyone's throats. They know that they're our allies, and we know that they're our allies, and there's no need to wear a neon flashing sign that says "HELLO! I'M AN ALLY AND MY NAME IS ___." People who feel the need to advertise their self-proclaimed "ally" status probably aren't our allies. (They might be in the future, but if you feel the need to reassure yourself like that on a constant basis, you probably aren't.)

And our allies are there for us not only in the pleasant, seemingly calm times, but also when we are being attacked, de-legitimized, and silenced. Allies assert our right to be part of and leading in a conversation about us. Allies speak loudly against de-legitimization and derailing, and stand with us when the media, the public, or just about anyone else insists on devaluing our lives and experiences.

We can see who are true allies are in bad situations. The true allies stay with us. The superficial ones seize the opportunity to show their true colors.

An ally is a person who understands that the leading voices in the conversation about autism must be Autistics, who accepts that the best authorities on the Autistic experience are Autistic people, who recognizes that the balance of power has historically marginalized and excluded Autistic people, who listens before speaking, and who supports the empowerment of Autistic people in words and actions, but mostly in actions.

And an ally is a person who will be neither intimidated nor swayed by the plethora of misinformation, misconceptions, de-legitimizations, and derailing levied constantly against us.

An ally is a person outside the Autistic community -- the community of Autistic people -- who is welcomed to join with the Autistic community in celebrating our identity and working toward the creation of a world where Autistic people are accepted and respected and included in all spheres of public and private life, across the lifespan, and regardless of severity of disability or presence of co-occurring conditions.

Anyone who isn't Autistic can be an ally.

You don't have to have an Autistic family member or significant other. (But you will have Autistic friends eventually if you don't yet.)

Some of the best allies can be people with other disabilities or from other historically marginalized groups. (They can sometimes also be the worst "allies.")

Bottom line, no one gets to call themselves an ally.

The Autistic community gets to decide who are our allies, because that's what an ally is -- someone who aligns with someone else, not someone who is in control of the conversation or relationship from the start.

Not human anymore - Is this what "ally" means?

Trigger warning: Discussion of murder of disabled people, ableism, and exact quote of potentially triggering public statement.

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Not human anymore - Is this what "ally" means?

I have flesh and eyes and bones and a beating heart,

big and strong enough to be beaten and broken a thousand times

and still sew itself back up.

I've spent nights huddled against myself, unable to move or breath,

staring with wide eyes at words I didn't know could be spoken,

shaking because no reassurances, no apologies could soothe me.

I have hands and lips and feet and a suffering soul,

and words waiting on the tip of my tongue to spill over

in a bold declaration that I am a person full and whole.

But what makes me human?

They talk about us without us, erase and debase our names

by defiling the stories of our murders and revising the truth;

in their eyes, we remain silent, invisible all the same.

I've sat at tables in rooms full of people who should have known better,

but instead of saying that murder is wrong, they urged sympathy for the murderer,

not for her innocent son who she killed, but for her.

Pretty words don't change the meaning when they're talking

about making my kind extinct, when our deaths become propaganda

points for political purposes. But we are human beings.

They omitted it, but the victim here, he had a name and

a life that was violently taken, without his consent, because of his brain

being a little different. His name was George Hodgins.

He was part of our world, with colors and tastes and sounds and smells,

saw beauty, suffered pain, longed for love -- but they don't want you to imagine him

seeing his mom with a gun to his head and wonder how he must have felt.

In the absence of his name, they can write his story without him.

They can choose who can be human.

He had flesh and eyes and bones and a beating heart,

and hands and lips and feet and a suffering soul,

and those don't mean a thing, when his life means nothing,

when they won't decry his mom for the bullet she shot.

So if those don't matter, what are we? Not human anymore,

not half-human or subhuman, our lives not worth living or protecting,

our murders not worth condemning but implicitly condoning.

Is this what "ally" means? If they claim in words to be our allies

while they say in words that George's name is unimportant in the story

of his own murder, their words are only words, no truth, all lies.

This is what it means when their sympathy is for his killer.

This is what it is to be Autistic when their empathy is for her.

This is what it feels to be stripped of self, made not human anymore.

I have flesh and eyes and bones and a beating heart,

big and strong, been beaten and broken a thousand times,

and now the taped-together pieces of my Autistic heart have started to come apart.

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This was written in response to the Autism Society's statement about the murder of 22 year old George Hodgins, an Autistic man whose mother shot first him and then herself in early March 2012. I have included the ASA statement below.

Appendix

March 17 Letters to the Editor, Mercury News

Originally visible here.

Cuts to adult disability support are devastating

The tragic story of Elizabeth Hodgins, who last week took her own life and that of her 22-year-old son with autism, leaves us truly devastated. While this incident is an anomaly, it shows that high stress on parents is very common in the autism community. We fear that stories such as these will continue if families still feel hopeless in their struggles.

According to the Mercury News, Hodgins was exhausted trying to find a program for her son. Like most states, California provides little or no appropriate support to individuals with developmental disabilities once they turn 22. In addition, California has cut $1 billion in developmental disabilities services during the past three years, and the Department of Developmental Services will cut another $200 million within the next year.

We cannot wait long for change. Autism diagnosis is experiencing a staggering growth rate. Today, 65 percent of all state regional center intakes relate to autism. The divorce rate among parents with a child with autism is as high as 70 percent due to the pressure.

Scott Badesch

President and COO Autism Society of America

Marcia Eichelberger

President Autism Society of California

Update: The Autism Society issued an apology.

March 20, 2012

Autism Society Responds to Tragic Death of George Hodgins

By Autism Society

(In response to the March 8 article, Sunnyvale mom kills autistic son, self, police say).

A letter from the Autism Society called “Cuts to adult disability support are devastating,” was published in the San Jose Mercury News on March 17 in response to reports of a woman murdering her son with autism and then killing herself. Since the article was published, some individuals have questioned the Autism Society’s motives for not mentioning the victim of the story, George Hodgins, 22. We apologize if our letter offended anyone.

It was wrong of us to not mention Mr. Hodgins by name, but this in no way was intended to lessen the value of his life or justify the killing of an innocent individual. Killing is wrong without a doubt, regardless of whether stress or pressure on a family is the culprit. If parents are dealing with stress and in a desperate state of mind, they should call their local police department or local crisis hotline for immediate help. We stand with those who mourn the tragic death of Mr. Hodgins and encourage all to remember the valued life of Mr. Hodgins in their thoughts.

The Autism Society is here to help. Call us at 1-800-3autism.