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

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.

______________

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.

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. 

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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