31 March 2012

Dear well-meaning strangers

Dear well-meaning strangers,

Starting tomorrow, you are about to be bombarded with public service announcements, billboards, letters, emails, graphics, and all manner of multimedia about "autism awareness."

Here's a revolutionary idea.

Every time you see or hear something that says something about April being "Autism Awareness Month," mentally replace that "awareness" word with "acceptance." There is a wide gulf between "awareness" and "acceptance." Not all awareness is good awareness, and awareness itself can be the farthest thing from acceptance.

Some Autistics have decided to reclaim April and call it Autism Acceptance Month. Paula Durbin-Westby's blog for the Acceptance Day and Month has spearheaded an effort that has spread to the Thinking Person's Guide for Autism, the Autism Society of Northern Virginia, and across the internet. (Go ahead, type "autism acceptance month" into Google. I can wait for a minute or two while you do that.)

Awareness only means some peripheral knowledge that something exists, whether as an idea, a fact, or a reality. One might be "aware" of Al Qaeda, but that says nothing about your knowledge or understanding of the group's structure, leadership, ideology, or history. All it means is that you are aware that something called Al Qaeda exists. Maybe you know that Al Qaeda is a terrorist group. Maybe you know that Usama bin Ladin was its leader until he was killed a year ago. But if you were to walk into a room full of Al Qaeda's leaders or full of counter-terrorism agents discussion a sensitive operation targeting Al Qaeda, and proclaim to be "aware" of Al Qaeda, they would all laugh at you.

Awareness means very little.

To be aware of autism means only that you know that something called "autism" exists. You may not even know any Autistic people. Or you may know one or a few, but still have very little grasp on what exactly autism is or means, never mind the full breadth and depth of Autistic culture and community.

Autism acceptance is a revolutionary idea when juxtaposed with autism awareness. Anyone can be aware. It takes about two to five seconds to become aware of something, perhaps slightly longer if you have cognitive delays. Acceptance requires actual effort and the willingness to set aside misconceptions, preconceived notions, stereotypes, and media-branded images and ideas. Gone with the idiot savant, the slightly socially awkward genius, the presumption of incompetence, the pity and fear based campaigns, the debunked theories of causation and recovery.

Acceptance means the active consideration of the idea that Autistic people have a unique and natural and normal way of existing in the world. It comes with its challenges but also with many rewards. Disability does not mean defective or broken or diseased. It means lacking typical abilities or lacking specific abilities. Autistic is not a swear word. It is a beautiful word, a name for an identity that represents an entire group of people who are diverse in their personalities, characters, abilities, and deficits. Autism is not homogeneous. Autistics are not homogeneous. But we are everywhere; we are a part of your community. We are in your children's schools, your houses of worship, your neighborhoods, and your workplaces.

We cry for acceptance, but usually our voices are silenced or ignored. Awareness campaigns are very rarely created by us about us, but about us without us. Please pay very close attention to what you see or hear about autism this month. Question what you read. Examine the rhetoric used to grab your attention while passing through a subway station or driving along an interstate. What words are used? How often will you hear "intervention" or "treatment" or "devastating" or "awareness?" How often will you hear "acceptance" or "supports" or "self-determination" or "self-advocacy?" You will hear words taken from the fields of biology, psychiatry, psychology, and charity. You will hear very few words taken from the fields of sociology, public policy, and disability studies.

If you have children, teach them to pay attention to the type of language they see or hear, and teach them to question what the people who put that language there wanted them to think when they heard or saw their words. Introduce them to Autistic people you know -- children, youth, adults. Instead of carefully-positioned, stark images of Autistics on billboards, let them see the real faces of autism. Show them that accepting their peers is far more important and respectful than merely tolerating them.

And if you can, take a stack of sticky notes (or better yet, paper and that blue painter's tape) and a permanent marker, and write "acceptance" on them. Write messages of hope and community -- there are Autistic youth and adults who are there to welcome Autistic children into the community, support them as they age into adolescence and adulthood, and speak for them as policymakers try to remove access to necessary supports and services. And whenever you see a billboard or a poster somewhere about autism awareness this month, take one of those sticky notes and cover the word "awareness" with "acceptance." Leave a website or email address for people to copy so they can learn more.

Don't fall for the awareness campaigns this month. Fight for acceptance.

Sincerely,
An Autistic person

29 March 2012

Yes, this is society's problem.

Trigger warning: Extensive discussion of bullying and detailed description of specific act of violence committed against person with a disability.

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Today, a good friend of mine shared this article about a twelve year old girl with brain injury, who five days ago, on 24 March, was lured to the house of a girl she thought was her friend only to be beaten savagely by four other girls, all of whom were aware of her condition.

The victim has hydrocephalus, or the abnormal accumulation of fluid in the brain, and has had nine surgeries in the last twelve years. The attackers knew that.

They beat her anyway.

Why did this happen?

According to the victim's mother, because she said a boy was cute.

The victim is terrified to return to school because of threats of more violence. The mother said that other girls were calling her daughter a snitch.

(The night of the attack, the victim was forced to stay overnight at her supposed friend's house after threats of more violence if she told anyone about what had happened.)

This is not okay.

I remember middle school. It wasn't a pleasant experience for me, and there's a solid bet that for the vast majority of you reading this article now, it wasn't a pleasant experience for you either. Young people have committed suicide because of bullying during middle school, young people who might have continued to do great things with their lives, young people whose lives were cut short by the vicious malice exhibited by their peers.

And we throw money and legislation at the problem.

Anti-bullying legislation isn't going to get anything done. Legislation does not change attitudes. It does not effect a social revolution. All it does is add several lines of indecipherable legalese to obscene long books of statutes and resolutions. Strongly worded lines of legalese, perhaps. But words without action will always ring hollow.

Bullying is not "kids being kids." It's not normal or natural. It is abnormal and unnatural, and the moment you begin to think of it as normal or natural, you have implicitly accepted and condoned it. Would you want to be bullied? Would you want your child or your sibling to be bullied? The automatic, indignant response should be no. Bullying creates an environment of fear and oppression. It is no different from terrorism, but it exists at a much smaller scale. Rather than large, dispersed groups of armed extremists demanding radical socio-political change, it exists in the form of individuals whose words and actions terrorize other people in even the most intimate interactions.

Whether it is authority figures bullying those entrusted to their care or people bullying their peers, the truth of bullying is that it is an unacceptable, inherently anti-social behavior that cannot be accepted as normal or natural.

But it will not end without sweeping social revolution. I am not speaking of geopolitical social revolutions, in which regimes fall and are replaced with radical and new counterparts, but rather of the revolutionalization of societal attitudes and institutions that currently allow bullying not merely to exist but to proliferate.

Yes, this is society's problem.

We collectively bear responsibility for the suffering and deaths that have occurred as a direct result of bullying because we exist as part of the society that allowed that bullying to occur. That means we collectively are obligated to address what is a systemic problem -- the self-evident failure of our society to engender and promulgate attitudes that promote peaceful and positive co-existence with one another rather than looking to violence or threatening violence as a means of interaction with the other.

The mother of one of the attackers in this recent news story claims to be devastated by the revelation that her daughter had participated in the savage attack, which was posted to Youtube. She is quoted as saying "I just can't believe my daughter could actually do that to somebody."

In order to address the problem, we must force ourselves to face it and recognize it. Yes, your child is capable of exacting violence on another person. Or your sibling or your friend. Or you yourself. Of all of humanity's achievements, we have grown to be quite skilled at inflicting pain and suffering on one another.

There are times when humanity disgusts me.

But society only exists because people do. Thus, societal problems are ultimately a reflection of flaws in ourselves. That is why attitudes must change. Legislation can't do that. I can't do that either. (After all, one might argue, even the words on this page are just that -- only words, nothing behind them, an irony and a hypocrisy unto themselves.)

Time and effort can change attitudes. Time and effort and people can change attitudes, and thereby change society. That is how a social revolution happens.

Until society changes, these things are going to keep happening. Twelve year old girls with brain injuries, Jewish middle school students on the wrong side of town, Autistic kindergartners, Muslims in second grade...

The cycle of violence and fear exists because we allow it to exist.

Humanity disgusts me because I am only one person tucked in one small corner of the world who sometimes is rendered unable to do much more than shake and cry. Because so far, attitude's haven't changed one bit.

Yes, this is my problem and your problem. Yes, this is society's problem. But since we constitute society, that makes this our problem.

27 March 2012

Autistic Empowerment: The Civil Rights Model


It was a busy day.

It began at 9:03 in the morning, when an Autistic friend who was planning to come to Georgetown from Pennsylvania called to cancel because her purse was missing, possibly stolen. Over the next several hours, the calls and text messages would increase in volume to near frenzy, pushing my smartphone to its hardwired and softwared limits. (So far, it's frozen at least nineteen times today. I've considered screaming in rage at Research in Motion or whoever-the-heck's responsible for creating Blackberries.) I count at least four missed calls from the last twelve hours. In the average week, I only have one.

Today was the culmination of months of ideas and attempts at planning. (Seriously, I created the event program sometime last night.) The panel was scheduled to start at 5:30pm, and we managed to assemble everyone by 5:20pm. We actually started at 5:52.

The event was "Autistic Empowerment: The Civil Rights Model." To my knowledge, this was the first time Georgetown hosted a campus event specifically focused around neurodiversity and particularly on the Autistic community. (I sincerely hope it won't be the last.)

(And yes, I designed the neat little logo to the left, which is also what appeared on flyers for the event.)

We were tucked away in a little-known but often-used space called McShain Lounge, where dinners, fundraisers, and lectures have been known to take place. Five maroon-cushioned chairs stood behind two tables covered with blue tablecloths on a small raised stage facing neatly arranged rows of identical chairs.

It took somewhere between thirty minutes and an hour of frantic phone calls and text messages about cabs and guard booths and benches to get everyone in one location. (As many of us in the Autistic community like to joke, getting a bunch of Autistics to do anything is like trying to herd cats. It doesn't work.)

I was happy that after my brief spiel and introduction, the audience took very readily to "flapplause," the Autistic adaptation of Deaf applause. Flap, don't clap.

The event opened with Melody Latimer, the author of AS Parenting and the Director of Community Engagement for the Autistic Self Advocacy Network. Melody's remarks focused primarily on the challenges of integrating the Autistic and parent communities, both of which frequently seem to overlook the presence of people who are both Autistic and parents (particularly of Autistic children.) Both of Melody's sons are Autistic. She has been diagnosed with Asperger disorder, her older son with Autistic disorder, and her younger son with the rather nebulous label "Autism spectrum disorder" in an attempt to recognize the rapidly changing nature of his abilities and challenges.

Melody Latimer -- Fun fact: This picture was taken at the Autistic Self Advocacy Network's five year celebration at the National Press Club in November 2011.

Too often, discourse among and between the Autistic and parent communities tends to be centered around Autistics who are not parents and parents who are not Autistic. Autistic parents may find themselves perched precariously on a hastily erected but well fortified fence separating two seemingly irreconcilable and discrete entities. Melody spoke of the necessity of urging parents to raise their children the right way -- rather than worrying about what you want your child to do, worry about what your child needs.

Why eliminate stimming behavior? Melody spoke of a parent who wanted her child to stop stimming so he wouldn't be bullied. "The problem isn't the stimming," said Melody, "it's the bullying." You stop the bullying, not the stimming. Then there's no reason to worry about the stimming.

(All of the Autistic panelists were visibly stimming throughout the panel, as were several of the Autistics in attendance.)

When Paula Durbin-Westby, former Board member and later staff member of the Autistic Self Advocacy Network, took the floor, she addressed first the issue of tokenism -- having one person from a group, in this case an Autistic, as a member of a group or leadership body. You're expected to be polite and well-behaved. Tokenism happens "in movies, where there is bit part for one character from a group" and when people are given long or important-sounding titles, like Co-Executive Director, but no real responsibilities, whether or not they have the capability of executing any duties.

Autism Speaks is guilty of this -- there are no Autistics actively or meaningfully involved with the organization's leadership and administration. In response to criticism for this egregious exclusion of the very group they claim to represent, they appointed one Autistic, John Elder Robison, to one of their advisory boards. (He serves alongside twenty-nine non-Autistics. Tokenism at its finest.)

Last year, the statutorily-created Massachusetts Autism Commission was also guilty of tokenism. To my knowledge (and I attended most of the Autism Commission's meetings as well as served on one of the subcommittees), the actual Commission itself had only one Autistic commissioner (Michael F. Wilcox), though there was at least one other person with a disability serving as a commissioner. (Charles Carr, who is also the Commissioner of the Massachusetts Rehabilitation Commission, has a physical disability, and has no neuro-developmental disabilities to my knowledge.) ASAN New England, however, attempted to rectify that, with several Autistics local to Massachusetts volunteering to serve on the Adult Services Subcommittee, one of several subcommittees assigned by age group of the target population. (Those were Dusya Lyubovskaya, Kevin Barrett, Phil Schwarz, Joyce Kohn, Sara Willig, and I.)

Paula C. Durbin-Westby -- This picture looks like it could definitely belong in one of those feature news or magazine articles.

At the panel, Paula further discussed the importance of mediums like the internet and social media in allowing Autistics to communicate and interact on our own terms, referencing Jim Sinclair's extensive history of the development of Autism Network International and the annual Autreat, and returning to describe the rise of the Autistic Self Advocacy Network in 2006.

Following Paula's presentation was Hope Block, board member of TASH New England and the Autism National Committee. Hope prepared a statement in advance that her iPod, which serves as an augmentative communication device, "read" aloud for her. In her statement, she explained the stigma and prejudice she faces as a non-speaking woman with autism by being presumed retarded and incompetent.

(Hope fluctuates between person-first and identity-first language, but prefers person-first. Those of you who read this blog frequently probably know that I stand very firmly in support of identity-first language, but I always respect others' wishes.)

Hope Block

Hope, who was unable to communicate with others until she was in her twenties, was placed in a sheltered workshop program, where she was put into a "back room" for participants who were unable to complete the regularly assigned task and treated in a particularly demeaning manner based on presumptions about her intelligence and abilities. She explained that her mother was able to remove her from the sheltered workshop and secure placement in a community-based program where she is able to be more independent.

But the most heart-wrenching part of Hope's presentation was the "reading" of a letter jointly composed by herself and her fiancé, Jacob Pratt, who is also a non-speaking person with autism. Hope lives and receives services in Rhode Island. Jacob lives and receives services in Connecticut. Though engaged, they cannot marry without risking losing eligibility for all of their supports and services. What is "the right even of life-sentenced criminals" is something that Hope and Jacob cannot have due to the current legal structures preventing them from achieving full self-determination.

(I was reminded of the fight against the Judge Rotenberg Center, the only institution in the United States that still electric shocks people with developmental disabilities and behavior problems. What is illegal and prosecutable to do to one's own children, students in the classroom, animals, convicted criminals, terror suspects, or even Guantánamo detainees is allowed to continue in the name of treatment.)

Autistic Self Advocacy Network founder and Obama appointee Ari Ne'eman began his presentation after a brief break for food. He opened with an anecdote describing a Midwestern university's decision several decades ago to integrate women faculty into the departments of the hard sciences -- physics, chemistry, biology, and the like. When the university administrators realized that the science building only had men's bathrooms (because there was obviously no need for women's bathrooms in the science building) and calculated the cost of converting some of those restrooms into women's bathrooms, they decided that "integration was too expensive."

Today, having both men's and women's bathrooms in a building is considered standard, Ari said, but at the time, it was viewed as an accommodation -- a form of going above and beyond the standard.

Ari Ne'eman -- Is it just me, or does he look way too happy in this picture?

Earlier, Ari commented that many popular TV series have what he terms "Very Special Episode Syndrome," in which, "the show contracts a disabled character for one or two episodes" before cleanly disposing of that character, with the disabled person "returning to the institution or special school where he or she presumably belongs, and the main characters learning a very valuable lesson."

The final presenter was Kerima Çevik, mother of a non-speaking young Autistic son and legislative advocate in Maryland. Kerima, who belongs to five minority groups, began her presentation by firmly declaring that she believes in the social model. "These beliefs came to me naturally," said Kerima, who continued to describe meeting other parents who believe that they are doing what is best for their children but who are actually hurting their children, infringing on their civil rights, and denying them voices. Her son is a self-advocate, Kerima said.

Kerima and her two siblings were the first three African American children to integrate an all-white elementary school in Illinois. Kerima continued by retelling a story often repeated throughout elementary school -- at least it was in Massachusetts, where I'm from. She told the story of Ruby Bridges, who at six years old was volunteered by her mother to the NAACP to be the first African American child to integrate the New Orleans schools.

"People pelted her with tomatoes, shouted racial slurs at her, wrote racial slurs on the walls she walked by as she walked to school. Four federal agents, at President Eisenhower's orders, went with her to school. Her mother could not make that walk with her."

Melody Latimer (left) and Kerima Çevik (right) -- This is one of those cell phone pictures, hence the grainy quality. Fun fact: I cropped myself and a third friend from this picture. :)

Artist Norman Rockwell made a courageous decision when he chose to resign his post at the Sunday Evening Post so that he could stop painting African Americans solely in positions of servitude. He took a position withLook, and painted The Problem We All Live With, depicting Ruby with "two federal agents walking in front of her and two federal agents behind her. There is a racial slur on the wall behind her." Rockwell's decision transformed him from being a bystander, said Kerima, into becoming an ally.

"I have a gift for all of you here, and it's on the back table," said Kerima, indicating the table in the back of the room where I'd placed copies of various literature for distribution. She adapted Dr. John Raible's "Checklist for allies against racism" into a "Checklist for Allies Against Ableism" targeted specifically for non-Autistics like herself who wish to be allies of the autism rights movement.

Of all of the panelists, I was glad that Kerima spoke last. (She was originally to be second-to-last, but she and Ari arbitrarily changed the speaking order halfway through the event.) Her presentation tied the idea of a civil rights perspective on autism and the struggles facing the Autistic community most closely to the civil rights struggles that other traditionally marginalized and underrepresented communities have faced. Kerima's son is very lucky to have her as his mother.

From left to right: Paula C. Durbin-Westby, Melody Latimer, Ari Ne'eman, Kerima Çevik, and Hope Block. (I took this picture with my phone, so I guess phone pictures can sometimes be decent quality.)

Following each of the presentations, questions ranged from asking about amusing things that Paula's son has said recently to requesting a distinction between the social and disability models of autism and to questioning the assumption that Autistics perceived as "high-functioning" have no legitimacy to address issues facing those perceived as "low-functioning."

"I'm pro-gay marriage," said one member of the audience, "but I'm very disturbed when people talk about the LGBTQ civil rights movement as the last great civil rights movement."

The autism rights movement draws directly from the disability rights movement, which has existed for far longer than the publicity afforded what is incorrectly termed a "new" movement. As Paula explained earlier, the Autism Network International rose in the early 1990s with Jim Sinclair. And Ari expounded on the history of the disability rights movement writ large in a talk last week at the D.C. Developmental Disabilities Awareness Month Celebration, where he named such leading figures as Ed Roberts and Judy Heumann, whose names are omitted from most elementary history lessons as surely as those of Martin Luther King Jr. and Susan B. Anthony are included and repeated.

The conversation about disability was already stirring at Georgetown with the creation and growth of Diversability, the student-led disability awareness organization, three years ago. My hope is that that conversation will expand to include critical engagement of the issues facing the developmentally disabled and Autistic communities as well as transition from mere awareness of disability to acceptance of those with disabilities, and from acceptance to full inclusion and meaningful engagement.

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In addition to the five panelists at the event, I asked six people to write brief position papers on further topics, including one person who authored a critique of the civil rights model (last link.) I cannot provide further materials from the panelists (yet.) Here are links to online copies of the materials that I do have available.

24 March 2012

Fun with Stickers, or How the Massachusetts Autism Commission Chooses Its Priorities for Policy

On 15 August 2011, the members of the Massachusetts Autism Commission attempted to cull something on the order of thirty or forty recommendations to a much smaller number. The identified priorities — all thirty to forty or so of them — were written on large pieces of white paper taped to the walls. Each commissioner and sub-committee co-chair present had six colored dot stickers — the kind usually seen at yardsales or in kids' reward books. They were instructed to place their stickers next to the numberered recommendations that they saw as most important. What ensued was highly amusing, particularly when I put it to video and set it to music later. (Pay close attention to the hands placing the stickers.)

23 March 2012

Neurodiversity and the Life of the Mind at Georgetown

Earlier this week, I was contacted by one of the staff writers for the Georgetown Voice, a student-run weekly news magazine here at Georgetown, after one of the staff had read the article Georgetown posted about my advocacy work last week. The Georgetown Voice published an editorial in this week's issue supporting neurodiversity, but due to space constraints, only published brief excerpts from my responses to the questions.

Here are the questions and my complete responses:

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Neurodiversity is the philosophy that neurological diversity is a natural and normal part of the human experience, both genotypically and phenotypically. Neurodiverse people include people with developmental disabilities, intellectual or cognitive disabilities, learning disabilities or differences, mental health conditions or mental illness, and mood or behavior disorders. The term is most strongly associated with the "Autism Rights Movement," a broad movement of individuals and organizations that applies the principles of neurodiversity and the disability rights movement to the Autistic community, but is not limited in scope to Autistic people.

1. What is your take on why neurodiversity is important in an academic or university environment?
It is as important to discuss and embrace the neurologically diverse and the issues that affect them as it is to discuss and embrace the racially, religiously, sexually oriented, gender, and nationally diverse and the issues that affect those respective constituencies. Disability studies is a new and emerging field; this academic discipline explores the historical and sociological perspectives of disability, as well as current trends and movements in the d/Disabled communities, public policies that affect us, and controversies among our community. Disability studies is the academic discipline that approaches issues around disability, much like Women's and Gender Studies, LGBTQ Studies, African American or Black Studies, Latino or Hispanic Studies, Jewish Studies, or Islamic Studies are academic disciplines that explore issues affecting those communities. Neurodiversity is important in the academic or university environment because its perspective on issues about disability are profoundly different than a purely medical perspective or a perspective that urges pity and insists on fixing or curing. Neurodiversity is about empowering and uniting the people labeled neurodiverse, and deserves discussion and critical analysis in the university environment.

2. Did you feel welcomed or marginalized within the Georgetown community?
Is it possible to say both at once? For the most part, I have found myself welcomed into communities across campus, student organizations, and my floor -- the Justice and Diversity Living and Learning Community. Faculty and students alike have expressed strong interest in learning more about the issues that affect the Autistic and neurodiverse communities. On the other hand, I do feel marginalized when I meet students who know nothing about neurodiversity or the issues that affect the neurodiverse. I feel marginalized when students ask whether I work with Autism Speaks, an organization that most Autistic adults dislike because it frequently propagates ideas or policies contrary to the interests of Autistic people and fails to include us in positions of leadership. But this is less a failure of the Georgetown community than it is a reflection of the failures of our society and a reminder of the hard work necessary to build a future more welcoming for Autistic people and more understanding of neurodiversity.

3. What can the administration or the student body do to increase awareness about and to cope with neurodiversity?

There is a huge difference between "awareness" and "acceptance" and "critical engagement." Awareness means nothing more than that people know that neurodiversity exists. They may still have many misconceptions, negative stereotypes, internalized ableism, or inaccurate ideas about what it means to be neurodiverse. Acceptance is a step higher on the ladder, and means that people are not merely aware that the neurodiverse exist, but have moved beyond the rhetoric that calls for a cure or a fix for people who are supposedly defective or broken or less than. Acceptance requires that the neurodiverse are fully included and welcomed as members of the community as other minority, underrepresented, or traditionally marginalized groups. Critical engagement takes acceptance one step further -- critical engagement is not merely accepting the neurodiverse as part of the community, but looking critically at the issues that affect the neurodiverse, whether those issues lie with society, rhetoric, or policy, and engaging in discussion about proactive means of addressing those problems to create a more equitable world for the neurodiverse.

The administration can work to encourage academic programming that focuses on issues that affect the neurodiverse, such as speakers or panelists who question the institutional framework of cure or recovery and discuss neurological diversity from a disability rights framework, which draws on the principles of social justice or civil rights. The administration can work with departments and individual professors to incorporate coursework that explores issues of neurodiversity and disability in general, including readings and other material written or produced by people with disabilities or Disabled people. My dream for Georgetown is that one day, we will have a Disability Culture Center that will function identically to the LGBTQ Resource Center, the Women's Center (which focuses on gender issues), or the Center for Multicultural Equity and Access (which focuses on racial or ethnic diversity.) Such a center would work in conjunction with other academic or university departments, outside organizations, and student organizations to regularly provide academic and social programming for both members of the Georgetown Community and the public centered around issues of disability rights and disability cultures.

Opening the conversation and ensuring that the neurodiverse are front and center in the conversation is the first step toward acceptance and then to critical engagement. Hosting programming such as the Autistic Empowerment: The Civil Rights Model panel (3/27, 5:30-8pm, McShain Large)1 that explores neurodiversity and disability rights issues at large while engaging established and emerging leaders in the disability and d/Disabled communities is an excellent way for both students and administrators to create more conversation.

4. What is your perspective on what the autistic community brings to campus?

I've only met three other Autistic students here, though statistics tell me that there should be roughly seventy Autistic undergraduates (either diagnosed or not yet diagnosed), give or take a few. My hope is that the Autistic community on campus will become stronger and more cohesive, along the lines of student organizations such as the South Asian Society, Muslim Students Association, GU Pride, Orthodox Christian Fellowship, or Chinese Students Association, so that Autistic students will have opportunities to be more connected around Autistic culture and community, should they so desire. Autistics are as much a part of Georgetown as are our South Asians, Muslims, LGBTQ folks, Orthodox Christians, and Chinese. Like those in the LGBTQ community, many Autistics may still be "in the closet" about being Autistic, and still others may be questioning and not yet diagnosed. But we are here, even if you don't know exactly who we are. We are students and faculty and staff. If engaged more now and into the future, we can become leaders in spearheading discussion about the topics and issues that affect us.

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1 The Autistic Empowerment panel is a Georgetown University event and unfortunately is not open to the public.

22 March 2012

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.

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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

21 March 2012

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.

18 March 2012

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.
______________


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.



______________

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.


16 March 2012

Include Us in the Conversation: What "Nothing About Us Without Us" Means

Edit (October 2013): There are portions of this post with which I no longer agree, though I still stand by its overall message. 


In early December (2011), a friend told me that the Psychology Department and Psi Chi Psychology Honors Society at Georgetown were hosting a panel called "Multiple Perspectives on the Autism 'Epidemic.'" At the time, there were three panelists: Roy Grinker, a medical anthropologist whose daughter is Autistic; Matt Biel, a clinician at Georgetown's Clinic for Autism and Communication Disorders; and Anne Gibbons from Autism Speaks, who also has an Autistic child. Three people with very different perspectives and ideas, but despite the title of "Multiple Perspectives," one perspective in particular was sorely lacking -- that of an Autistic person. None of the panelists on that list are Autistic.

Particularly for a panel called "Multiple Perspectives," it seemed an egregious omission to exclude an Autistic person from participating on the panel, particularly when there are Autistic adults with backgrounds in research or psychology. We were not included in the conversation. There was going to be Something About Us Without Us. I wrote to the panel organizers and met with the professor who advises the Psi Chi Honors Society to express my concerns about holding any panel about autism, but particularly one advertising "multiple perspectives," without any Autistic speakers. Thankfully, the event planners were receptive, and they issued an invitation to Scott Robertson, an Autistic activist and a Ph.D. candidate researching disability studies and assistive technologies in the College of Information Sciences and Technology at Penn State University. The panel's name was later changed to "Multiple Perspectives on Autism Research," and ultimately featured five panelists.

But the problem with what the event planners did lies with the mindset that allowed them to go about planning an event intended to feature multiple perspectives on autism without thinking to include an Autistic person as a panelist. While I was told that the panel was drawn together primarily by the students involved reaching out to their own connections (and there's nothing wrong with that in itself), that's still no excuse for not realizing that a panel about autism with multiple perspectives must have at least one Autistic perspective.

Unfortunately, this is normal behavior.

Last year, one of the fifty states' autism commissions was originally supposed to have a few Autistic self-advocates serving as members of the commission, but when it was decided that there were too many people on the panel, the first people to be cut were the Autistics. At a recent disability related conference, a woman with an Autistic son spoke about issues affecting Autistic people, despite the fact that her sixteen year old son could speak perfectly well for himself. This week, a high school hosted a speaker to talk about autism. The speaker is the parent of an Autistic child.

If we were talking about people in wheelchairs, Blind or Deaf people, people with cerebral palsy, or people with learning disabilities, it would be unthinkable to hold a panel or an event about those people without at least one of them included meaningfully. If we were talking about Black or African American people, Jews, Lesbians or Gays, Women, or Muslims, it would be considered insulting (at the very least) to exclude a member of that group, and absolutely unconscionable at the worst. Yes, caregivers of people in wheelchairs have valuable ideas and opinions about issues facing people in wheelchairs. Yes, White or Caucasian spouses of Blacks or African Americans have valuable ideas and opinions about issues facing Blacks and African Americans. Yes, non-Muslim scholars of Islamic Studies have valuable ideas and opinions about issues facing Muslims.

But those people cannot speak for members of a group to which they do not belong. A non-Muslim scholar of Islamic Studies might be very educated about various aspects of Islamic theology, jurisprudence, and political history, but a Muslim, by nature of being Muslim, will understand far more about what it means to be Muslim than any non-Muslim. Every Muslim in the world does not share the exact same experiences, level of piety, or beliefs as every other Muslim, but they do share one thing that no non-Muslim will have -- the characteristic of being Muslim.

This is true of Autistics as well. You cannot discount an Autistic person because he or she can't possibly speak for every single other Autistic person. No two Autistic people are going to have the exact same experiences, abilities, or challenges. But any Autistic person will automatically, by nature of being Autistic, understand far more about what it means to be Autistic than any non-Autistic. If you exclude an Autistic person because he or she does not represent in every possible way the experiences of every other Autistic person, then you make it impossible to logically include any Autistic people in any conversation about autism.

Nothing About Us Without Us has been a foundational principle of the disability rights movement since its inception in the latter half of the twentieth century. It's very simple. Nothing About Us Without Us means that whenever there is a conversation about us or about issues that directly impact us, we must be included at the table and given equal voice as the other participants.

While it has become standard practice to have conversations about autism and Autistic people without Autistic people, this is a practice that must change. Autistic people and our allies have routinely criticized events and conversations about us without us. Now it's time for the public to realize that this repeated fallacy represents a failure of society to change its attitudes about us. We can speak (or type or write or sign) for ourselves, and it's time to listen. It's past time to include us in the conversation.

08 March 2012

Letter to the parents of Autistic children

Note: If you are seriously considering suicide, please call the suicide hotline immediately at 1-800-273-8255. If you are seriously considering hurting or killing your Autistic child, please call the crisis hotline immediately at 713-468-5463



__________

To the parents of Autistic children:

We need you.

Sometimes in public discourse, Autistic adults and non-Autistic parents disagree over very important issues that affect each of us personally. Sometimes this disagreement is spectacularly explosive.

But there is no way for the autism and Autistic communities to move forward without creating some type of group cohesiveness. Yes, that means that we will have to enter into painful dialogue and discourse, and yes, that means we will have to accept the validity and legitimacy of the ideas and feelings of people with whom we may disagree. It does not mean that we have to set aside all of our differences, because that would make us self-deceivers. But it does mean that we have an obligation to each other and to ourselves to recognize what Dr. Martin Luther King Jr. called "inescapable mutuality."

Every Autistic child, youth, and adult had parents. Many of those parents were non-Autistic, and some were Autistic, and others were likely diagnosable as Autistic. Many, but not all, of those parents were good parents. Most had very good intentions and wanted what they understood to be the absolute best for their children. Others were abusive, emotionally or physically, and did not care much for their children's welfare.

And parents have always been deeply involved in the conversations about autism. Many times, non-Autistic parents have been the primary and only voice speaking about autism while Autistic adults have been excluded from the conversation. Many times when Autistic adults ask or demand to be included meaningfully in conversations about issues that affect us, we are told that we don't or can't represent or understand the breadth and diversity of needs and abilities of the whole Autistic population.

The truth is that all of our voices are valuable, important, and necessary, particularly when we disagree among ourselves and between each other.

The truth is that we do not merely deserve to be validated, but that we must be.

The truth is that we, Autistic adults, youth, and children, need you. We need you to support us. We need you to love us. We need you to listen to us, and to believe that whatever we have to say, write, sign, draw, or communicate in any other way is of vital importance whether or not you agree with it.

Without your help and love, we might not make it in the world as adults. Many non-Autistic parents worry about what will happen when their Autistic children will age first into adolescence and then into adulthood. They worry about whether their children will ever be able to live independently, and if not, what options their children will have to live as independently as possible. They worry about whether their children will ever be able to get and keep a job, and possibly support themselves.

And the truth is that the best outcomes can occur only when all involved work to give us as much independence and self-advocacy skills as possible. The more we can learn to express ourselves and communicate with the people around us, the better we will be able to advocate for our own needs and desires. The more we can learn to cope with anxiety and sensory problems, the better we will be able to navigate a world that was not built with the needs of Autistics in mind. And you, parents, are placed in a unique position to be able to encourage the lifelong development of self-support and self-advocacy skills.

Sadly, many parents of Autistic children do not receive support from their families, friends, neighbors, or communities. You may feel isolated, alone, and overwhelmed. Most of you did not expect to have an Autistic child, and most of you don't enter the world of autism understanding all of its subtle nuances -- how to negotiate an IEP, how to navigate the confusing array of "therapies" and "interventions," how to plan for the future, how to appropriately measure and evaluate your child's development. Being thrown into a new and unexpected situation can be confusing and stressful. It can be worse when family members refuse to acknowledge your child's special needs or worse yet, blame your parenting for producing a "defiant" or "stubborn" child. Many of you probably cry when you think no one can see you.

But there are some things we want to tell you.

Don't give up. No matter how overwhelmed you might feel at times, we need to know that you are determined to do everything you can to ensure that we have a place in the world as we grow into it. We need to know that of all people, our parents have not given up on trying to make the world a better place for us to be.

Seek support. National organizations like the Autism Society, the Autistic Self Advocacy Network, the Autism National Committee, and the Autism Women's Network have chapters and members across America and sometimes abroad (and frequently have partner organizations and connections to people in other countries.) You will not like or agree with everyone you meet in person or online, but you have to surround yourself with a support net of people -- whether other parents, Autistic adults, or professionals -- who can appreciate the struggles that you and your child face.

But seek support especially from Autistic adults. Even if you disagree with the ideas or beliefs of some Autistic adults, we are people who have been in the same places as your child. We share many experiences, including the ways in which we experience and perceive the world around us. Some of us were head-bangers. Some of us cannot speak. Some of us cannot live independently. Some of us went to segregated classes or schools. Some of us went to mainstream schools. Some of us also have mental health conditions, and some of us have also been tested as gifted. Most of us stim. Some of us can "pass" for "normal," but many of us can't. We are not identical to each other or to your child, but we can identify with your child. We have been Autistic our entire lives, and we have survived the transition from childhood to adulthood. We can offer insight into the ways your child behaves, acts, and processes information from firsthand experience. And we can tell you what has worked and what hasn't when we had to transition into adulthood.

We, Autistic adults, are the continual reminder that what you do as you raise your children will have a lasting impact on the next generation of Autistics. What our parents did for us -- both the good and the bad -- has permanently and undeniably contributed to who we are today. Be the positive force of encouragement and support for your child.

We needed to know that our parents loved us exactly as we are. We needed to know that instead of being obsessed with fixing or managing us, our parents wanted to blaze a trail for us to live and thrive as Autistic people. We needed our parents to understand that it is okay to be Autistic, even though that means we are also disabled. We needed our parents to guide us into your world -- the world of people who aren't Autistic and who don't understand what it is like to live Autistic. We needed our parents to be there not only when times were good and we were coping well, but also when times were bad and we needed more support than usual.

Your child does too.

Your child needs you to know these things, to do these things, to understand these things.

Your child needs to know that Autistic doesn't mean less or worse or defective or broken. Your child needs to know that you value being Autistic. Your child cannot become a healthy and happy adult unless you show with both words and actions that your child is loved exactly as is, and that your child will be supported and guided to as much independence as is possible.

It is not easy to be Autistic in your world. Your world was not made or meant for people like us. This is why we need you. Without that love and support, we might not make it in the world, and if we do, it will be harder than if we had that love and support.

We live in a society where ableism, the idea that people are superior or inferior on the basis of ability or lack thereof, has been thoroughly institutionalized in our attitudes, systems, service provision, and language.

This Tuesday, the sixth of March, the mother of a twenty-two year old Autistic son shot her son and then herself. She said that she was tired, lonely, and unable to care for her son anymore. The article reporting the murder-suicide quoted neighbors and other people who knew the family describing the mother as a wonderful person who loved her son, was under a big strain and depressed, and who had no respite. While I'm not inclined to spend my words vilifying Elizabeth Hodgins, this is not the first time a parent has murdered an Autistic child and was all but absolved for the crime in the media simply because raising a child with special needs can be overwhelming and stressful.

When parents murder children who are not disabled, the public is typically enraged and demands justice. When this happens to children with developmental or intellectual disabilities, it is far more typical to read comments and quotes expressing support for the parent who killed rather than condemnation of the societal conditions and attitudes that drove the parent to such desperation to commit murder of a human being.

When we Autistic adults read this type of article -- and this is only the most recent in a long train of killings of Autistic children -- it terrifies us. When articles reporting on these crimes spend the majority of their words not merely expressing sympathy for the perpetrator but calling for readers to understand that the difficulty of the situation somehow justifies the murder of a disabled person, they also inadvertently send the very powerful message that the lives of people with disabilities are not equal in value or worth to the lives of people without them.

Don't let your children grow up in a world where society devalues their lives.

It is parents, albeit a very small minority of parents, who visit these atrocities against their children, against children who needed their love and support. Thus, it you, parents, who bear the great responsibility to make your voices heard throughout your communities and networks that you love your children as they are, that you want the best for your children even if it means making enormous sacrifices, that you want to be part of the collective community in uplifting and empowering the next generation of Autistic children so that one day no parent will feel compelled or driven to murder and that no Autistic child will grow up thinking of him or herself as defective or broken or a burden.

We need you, because we can't do this alone. Your children need you, because they deserve to grow up in a world where things are better for them than they have been for us. Your children need you to dispel ableism from their world, little by little, so that one day there will be a future where ableism is no longer institutionalized into our society and systems.

Be here.







__________
12 Oct. 2012: I am adding the following text (trigger-warned and in white color to prevent inadvertent triggering) to this page in case people who are contemplating suicide, murder, or both go to Google:

I can't deal with autism anymore
I can't live with autism anymore
considering suicide
thinking about killing my kid
thinking about killing my child
can't put up with special needs anymore
can't tolerate autistic child anymore
legal to kill autistic child
sentence killing child with autism
what happens if i die before my child with autism
child with autism won't survive if i die
frustrating putting up with autism
special needs end of my rope
want to give up kid with autism
nowhere to turn autistic child
no support autistic child
I have no support from my family child with autism
want to kill my child autism
end suffering autistic child
mercy killing child with autism
can't go on parent child with autism