National Day of Mourning Post 1: Nine Steps We Can Take to Make Autistic Lives More Valued in Our Culture

Today, March 1, 2015, is the Autistic and Disabled Communities National Day of Mourning. It is usually a day to hold candlelight vigils in honor of disabled people who have been murdered by their caregivers. When this happens, the parents and caregivers often receive lighter sentences by the courts, if any at all, based on the idea that parents should not be given the same sentence for murdering a disabled child as they would a non-disabled child, and the media portrays the murders as a justified act claiming their child was a burden on the lives of their caregivers.  In the past year, more and more autistic children have been murdered by their parents including 6-year old London McCabe and 8-year old Jude Mirra. The local Kansas City chapter of the Autistic Self-Advocacy Network that I belong to was planning to hold a vigil this day that I was going to come home for, though due to technical issues, they had to cancel it, but I want everyone to know that just because this vigil has been cancelled, that does not mean that this day has lost its meaning to me.

                Today is also the day that two students on my campus, 20-year Erin Hook and 19-year old Jennifer Reeder, were killed in a car wreck. When we lose someone we love, or whose lives were important to us, we want their lives to be respected by those around us. Therefore, I realize we as individuals need to take steps to alleviating the notion of autistic people as burdens, and see them as people who should be respected for their inherent merit and character without needing to be changed to the same respect we ourselves enjoy, and who are all able to contribute to our society. We can make that change in perception by changing the way we speak, treat, and view autistics. I believe by following nine basic steps in treating autistic people, we can change the way their lives are valued and how people treat them, and these steps are:

1.       Exchange the term “Autism Awareness” for “Acceptance,” “Inclusion,” or “Rights.” Autistic people are not burdened by the fact that so few people know about our weaknesses or the trouble we are said to give to others, but by them not knowing our value to society and abilities. Awareness tends to paint a picture of children causing their families stress by their needs rather than people of all ages who can give a lot to society if given the appropriate opportunity to do so.

2.       Let’s stop using terms like “high” and “low-functioning.” We need to stop grading autistic people based on their ability to get good grades, go to college, and live independently. They have a lot more to offer than that.  Everything that an autistic can give should be valued and we need to judge them by the individual merit of their actions and not their abilities.

3.       Let’s move away from therapies such as Applied Behavior Analysis. ABA has cost thousands of dollars and hours of therapy trying to rid autistics of behaviors that should be accepted such as stimming and avoiding eye contact. Eye contact has been shown to not be essential to communication (how would blind people communicate then), while dozens of autistic activists have pointed out that stimming helps them self-regulate, express emotion, and tune out distractions. Amy Sequenzia once said, “If it helps them, it’s not ABA.” Let’s stop treating autistic people as if they need to be changed to be accepted.

4.       Let’s use identity-first language instead of person-first language. Identity-first language (autistic person), as opposed to person-first language (person with autism) implies that autism is a part of themselves and not some part you can get rid of. We need to stop thinking we can do that when autistic people do not please us. It also implies autism and personhood are mutually compatible. We wouldn’t say “person with blackness” or “person with Buddhism.” If an autistic person you are talking to would prefer you use person-first language, as some do, then you should use it, and you can ask them which they prefer, but it depends on the person.

5.       Let’s stop using the puzzle piece to represent autism. As many of us have pointed out, the puzzle piece implies that autistic people are to be put together, rather than already whole themselves. It suggests that their diversity of abilities is linear and that they fit together separately when in fact, our range of abilities is more cyclical, where one person can go from the other end at any time, and that we fit together naturally like a rainbow, making one complete picture. More empowering symbols include the rainbow infinity, a butterfly with “hidden” wings, a pie chart, rainbow stars, and an infinity on a heart with wings. No one symbol can unite all the autistic community, but as we get older, we need symbols that are more empowering and less infantilizing. 

6.       Let’s stop portraying autism as a medical disaster that causes havoc on societies and families. The idea that autism is more prevalent now than ever before only makes sense when one ignores the increase in professionals able to diagnose autism, the increased number of parents and teachers aware of and looking out for autistic signs, the more individuals and families willing to admit to autism in surveys, the increasing number of adults being diagnosed with autism, and the increased criteria for autism diagnosis. There is no science to it whatsoever. 

The idea that more boys are autistic than girls only holds up when one ignores that girls are frequently undiagnosed because autism manifests itself less in ways that stick out in girls. Girls have learned to blend in naturally perhaps partly due to the media and television Such as House Bunny, Mean Girls, and Legally Blonde) telling them what girls “are supposed to be like,” whether a beauty queen, popular girl, cheerleader, Greek sorority girl, and so on.

We also need to stop saying that an autistic child makes his/her parents more likely to get divorced. Former Autism Speaks executive Alison Tepper Singer claimed on The Oprah Winfrey Show that if you have an autistic child, you are twice as likely to get divorced (You can figure that one out). A study done in junction with the Autism Society of America and Easter Seals concluded that divorce rates of parents with autistic children were around the same to slightly lower to those of parents without autistic children. Connecting autism to divorce is simply a scare tactic by groups such as Autism Speaks, the National Autism Association, and the Autism Research Institute to raise money for biomedical research, executive salaries and expenses, and advertising with little going to services to help autistics who need it this very moment. 

Let’s also stop using face value number statistics such as “the cost of taking care of an autistic person over his/her lifetime is $3,200,000.” This may seem like a lot, but when divided over eighty years, it is about $40,000 per year, about the cost of a non-autistic person.”

We need to also stop portraying autistic people as criminals. Reports of Elliot Rodgers and Adam Lanza have shown that there was no correlation to their actions at Santa Barbara and Sandy Hook respectively, and statistics indicate that autistic people are less likely to commit crime. We might also point out that nearly all the world’s mass murderers-Hitler, Stalin, Mao, Pol Pot, Idi Amin, and Mengistu-were neurotypical, so perhaps we should connect that to genocide.

7.       Let’s stop expressing sympathy towards parents who murder their autistic children. If mothers like Julian McCabe think it would be harder to see her son London not live up to conventional measures of success than it would for her to be able to see her son London again, then I don’t think she cares about him very much. I know of several parents of non-verbal autistic children who don’t murder them who never have sympathy expressed for how they are willing to give their child the best possible life at any cost. I also know several parents who have lost a child, and their lot is not an easy one. Many never recover, and some have even contemplated suicide. Julian McCabe, on the other hand, was willing to go to jail, albeit shorter than she should have been in it, in order to rid this world of her son. No evidence has been found for her to be mentally insane, apart from Dr. Phil’s “armchair diagnosis,” which did not excuse Elliot Rodgers and Adam Lanza from their actions, and in any case, most insane people do not commit murder. 

8.       Let’s listen to the opinions of autistic voices. All of them. Unedited. Acting on their own behalf. In their own context. The whole variety. Verbal and non-verbal. Autistic adults have been the ones making awareness of the fact that autistic people can feel empathy, have careers, get married, and be a part of society. They are frequently inspirations to autistic children and have as much, if not perhaps more so, to offer than the so-called licensed professionals. Autistics such as Temple Grandin, John Elder Robison, Dawn Prince-Hughes, Naoki Higashida, Amanda Baggs, and Daniel Tammet have all helped us immensely to understand how the autistic mind works, and other younger-generation and not-so-famous autistics can give us the same insight to. It’s time to really listen.

9.       Let’s be careful of the “Autism” groups we invest in. More than we like to admit it, so-called Autism organizations really are acting for themselves. Autism Speaks is the only autism organization that could have no autistic members on their board, provide most of their money to executive expenses, genetic research, and advertising instead of autistic services, compare autism to a car wreck, being struck by lightning, or cancer, AIDS, and diabetes combined, support dangerous fringe movements such as the anti-vaccine movement and the Judge Rotenberg Center, fire a mother for claiming her autistic son wasn’t given on the job accommodations, block legislation to lessen the gap in autism services for girls and minorities, divide autistics using labels like “high-“ and “low-functioning,” and call themselves the voice of autism. This group is now sponsored and promoted by groups, celebrities, and businesses wanting to look like they are doing good such as Home Depot, Dollar General, Yoko Ono, Alpha Xi Delta, and others. Instead of being the grassroots organization most people associate it to be, co-founder Bob Wright used his media and business connections to reach all these groups, but it didn’t just happen in a vacuum. The public jumped on the bandwagon, donating and pledging tons of money to AS, which its sponsors took as good incentive.  By turning away from groups like these, we send their sponsors a message. Even liking them on Facebook should be avoided because it sends the message to do-gooders that Autism Speaks is doing good. On the smaller educational-youth culture level, students looking for publicity and fame slap the name “autism awareness” to step up campaigns to get elected to student positions using autistics low status for their own, when in fact their records will show that they haven’t done anything constructive for the autism community, and their campaigns will give know information apart from their popularity, while grassroot autistic student initiatives go undervalued as people think they’ve done their part. 

If you want to know what is going on with these, you can look at Facebook pages such as Boycott Autism Speaks and their website boycottautismspeaks.com, who will keep you up to date on their list of sponsors and actions you can take to mitigate their effect. My basic message: be aware of who you’re giving to and express your intentions in a constructive, well-thought out way, making autistic’s representatives accountable for their deeds. These steps may not get rid of all murders of autistics to come, but I guarantee they will honor the autistics who have gone and the loved ones we know who would have suffered the same thing in another parent’s hand. This is how the autistic world will remember you. Listen to me, and together we can solve the real puzzle of why courageous, honest, hard-working, decent individuals go underemployed, undertrained, underutilized, and undervalued.  We must act righteously, speak righteously, or be destroyed righteously.  Will you all take this challenge?  Will you be a champion?

Peace,

Ben Edwards

The Autistic's Prayer

This is a prayer I recite every morning after my meditation for the furthering of advancing equality and access for autistic people in our society.  This prayer is for the advancement of cross-disability activism, inclusive education, inclusive societies, neurodiversity, the halting of the excesses of groups like Autism Speaks, and for the safety of all current and future autistic people in the hands of their caregivers and others.

May we never allow the short sight of people’s potential to override the long future we are all bound to share together.

May we never allow our thoughts on the quality of one’s future stop their future from coming to fruition.

May we not let groups paying large money to medical, management, or corporate expenses move us to not pay it forward.

May we not allow the medicine we have been given me used to call others diseased.

May we utilize our hearts with wisdom and striving,

recognizing all people under oppression and ableism as potential allies.

May we take note of the discrepancies on our schools and let the government know that we know.

May we allow all brains the full opportunity to make their greatest contribution to society, notwithstanding our current medical knowledge in any given age,

peacefully when we can, while protecting ourselves and our loved ones from harm and danger.

I say this prayer to plant its wisdom firmly within me so that it may spread around me and throughout our earth,

Every day of every month of every year until equality is realized.

A Call to an "Autism" Sorority

This is a response to sorority Alpha Xi Delta over their support of Autism Speaks.  Currently, during the murders of London McCabe by his mother, his father asks that all donations in respect to him go to the Autistic Self-Advocacy Network or the Dan Marino Foundation.  I put this up in response wondering if AZD truly cares about “the children” as they say they do.

Higher Priorities

How many Autism Speaks supporters does it take to screw in a light bulb?

None.

Because in their world, lightbulbs were never invented

because no one existed to invent them.

And yes, bring on the “fuck you’s,” and rolling your eyes

because in four years, your letters will go in a box,

but our lives will live on forever.

And you may become mothers of children, even autistic children,

and then where will that have gotten you?
We are the Autistic Self-Advocacy Network,

with support and activities,

a place where we all meet new friends for life,

doing real philanthropy,

giving each other support to help reach our dreams and goals.

Our colors: the colors of the rainbow;

our symbol: the symbol of infinity;

our mascot: any animal really-we autistics can sometimes relate to them;

our flower: flowers for the autistics dead by filicide on National Day of Mourning

with chapters through Kansas City, York, Michigan, Australia, New Zealand, and Oregon;              

with headquarters in our nation’s capital,

our motto, “Nothing about us without us;”
founded in 2006
by autistic collegiates;

our minimum GPA: none-you don’t even have to be in school;

our costs: none, though donations are welcome;

our letters: whatever letters are necessary to raise our voice.

Parties, glamor affairs, alcohol: these are not for me, thank you.

I don’t care too much about how I dress, and I don’t feel the need for acceptance in this mass consumer culture.

I don’t feel the need for others to know what I’ve done.

I wear no mark of dignity on my sleeve.

I am proud in myself, giving while others are sleeping, rocking in my own skin.

Nature, poetry, movement, and the arts: these all inspire me.

Needing only to go where women are as they appear in mirrors and want what they speak for.

I consider myself akin to all who care what is good and pure in this world,

taking a paddle to discrimination.

And caring and support are its pledge,

becoming members for life.

These are my brothers and sisters.

Autistic Pride Day Song

I would never want to be someone I’m not,

and leave my own self just to rot.
I am autistic and proud.
I’ll say it out loud.
We are human first.
We’ve been through the worst.
I can live just as good a life if the chance is given.
Better, if I am that driven.
I don’t need to ne neurotypical if I am to heal
or pomp from celebrities and sex appeal.
Our services are where we should be investing,
not in genetic testing.
A person’s abilities are not a choice.
We together are our greatest voice.

Too Young, Too Young

London McCabe and Jude Mirra: young boys I never knew, much too young, much too young.

Could I meet the young men of which they never grew, much too young, much to young.

They had no voice,

or if they did, it didn’t stop them from meeting this fate, much too young, much to young.

Painkillers in drinks and a fall from a bridge,

the thought that the mothers tried to prevent a bad future seems of great debate, much too young, much too young.

While services are behind,

a rescuer has shown up too late, much too young, much too young.

London had many willing surrogates,

but his mother’s drive was much too great, much too young, much to young.

Hate the mother, hate the child;

there’s always hate, much too young much too young.

An Autism Organization Like a Date

She sits by the movie theater

waiting for her date.
He was going to meet her at lunch a movie.
He said he’d meet her at 3:30.
She is as anxious as ever.

3:30 arrives.

She expects to see him. It’s ok. He’s only a minute late.

3:35.

Don’t worry, she tells yourself, He’s probably just running behind.

3:45.

She's anxious but she decide to wait for him a little longer.

4:00.

She's telling yourself he’ll be there. Just wait a little longer.

4:30.

She realizes it’s too late to get dinner and a movie, but she can still see the movie if he gets here in five minutes.

4:31.

She calls her date just to let him know she thought you were meeting today at 3:30, wondering if something came up and she hope to see him soon.

4:50.

He hasn’t called or texted her.
She are a little annoyed because she paid for the ticket,
drove all the way out here,
and spent hours on her hair and make-up,

and still he hasn’t shown up or called.

He’ll be there. We can still go out. It will be just the same, she assures herself.

5:15.

Still waiting on the bench, she decides to take a walk around the strip mall.

She walks by a bar: there he is,

kissing the girl who gave her hell since first grade.

She may decide it’s ok. He says he loves her.

She doesn’t want to rock the boat by hurting him,

He said he’d show up, but he never has.

But his best friends stick by his side

Autism Speaks is the rude date.

Those who defend him are like those who still support them.

Sounding the Real Alarm: Battling Autism Hate Speech

For this post, I am going to be talking about Autism Speaks’ new documentary Sounding the Alarm: Battling the Autism Epidemic, shown at Massachusetts General Hospital’s Lurie Center for Autism, but before I do, I want to explain something in response to a question some of you may very well ask. Before you ask me, “have I seen Sounding the Alarm? If you haven’t, how can you say it’s bad?” why don’t I ask you, “Have you ever read Adolph Hitler’s Mein Kampf?” “Have you ever watched Keeping Up with the Kardashians?” “Have you ever eaten a fried Snickers?” If you can ask me how I can hate Sounding the Alarm if I’ve never seen it, is it not fair for me to ask how you can know that Mein Kampf is hateful, that Keeping Up with the Kardashians is idiotic, or that fried Snicker’s bars are disgusting? Now, assuming you reading this are following along with me, I would like to tell why I am against Sounding the Alarm and to mention that I have heard respectable reviews about this movie from sources I trust very much the way you may have developed distaste for Keeping Up with the Kardashians. Just like the average citizen makes their decision about new movies in theaters by reviews from critics, I make my decision about Sounding the Alarm by people I trust and who have seen the movie, though you’re free to watch it if you doubt me. These sources include well-known writer and mother of a severely autistic child, Susan Senator and people from Charity Navigator’s most highly rated autism charities such as the Autism Women’s Network and the Autistic Self-Advocacy Network. Now, if you can forgive me for the fact that I may be unfairly insinuating that you are in-line with the makers of this movie, you will see what I have wrong with it, and perhaps why I may have come off so harshly at you at the same time.

-In the beginning, there is a black screen showing statistics on the “rising rates of autism” accompanied to threatening music.

                -At no point in the film is there mention that the rising numbers of children being diagnosed are due to the increasing number of professionals able to diagnose autism.

-Throughout the film there is talk of the costs of autism. One example includes Autism Speaks co-founder Bob Wright lamenting the fact that children (or rather) people don’t die of autism, despite the fact that his grandson is autistic. There are also interviews with doctors talking about the millions of dollars autism costs and parents complaining about having to pay for “autism therapies” out of their pockets.

                -Nowhere in the film did they mention this: that many autistic people find ABA, the autism treatment most discussed in the film, to be degrading and dehumanizing. It takes eight hours a day of ABA for it to show any effect, hindering children’s right to be a child, not an experiment.

-In part of the film, a young man with autism and Down syndrome was shown with his parents and care-givers explaining how he was unable to communicate.

                -He was communicating right in front of them and they weren’t listening. Even though he wasn’t communicating with verbal speech, he was trying to communicate to them, and like many autistic people, he tries to learn to communicate with people around him failing to listen.

-At one point in the film, a man named Dan Spitz of Anthrax came on, calling parenting a child with autism “a living hell.” He later complains about having to work to provide autism services for his child, and hugs his wife goodbye before he goes on tour.

                -The fact is, most parents have to work to provide for their families. According to Autism Women’s Network contributor Lei Wiley-Mydske, “I know plenty of military families who have Autistic children who are separated for long periods of time that don’t blame it on Autism. Once, my husband went to the Canary Islands to work for eight weeks because he has to work so that our family has money, but he didn’t blame the fact that our child was Autistic for our separation. Maybe it was my Autism that caused it? In any case, most people have jobs and have to work to make money and that is not the fault of Autism.”

-There is a scene at an autism walk where they address, a legitimate concern, that people in marginalized communities do not have access to resources. 

                -Autism Speaks fails to mention how only 4% of their money went into autism services in 2012, and 3% in 2013, on what happen to be their own tax return forms, which all charities are required by law to publish, yet Autism Speaks continued to bemoan the lack of services for autistic people. Autism Speaks spends immeasurably more money on research and administrative costs, rather than on the people who need it the most.

-At one point in the film, a mother says she cannot trust her son to strangers because, “Most days I want to kill him. And I love him. How am I supposed to expect strangers to have the patience with him?” This strikes a chord with Autism Speaks former video on autism where then-Autism Speaks executive Alison Tepper Singer claimed when she found out her daughter was autistic, she wanted to drive the car with her daughter in it off a bridge, and the only reason she didn’t was because her non-autistic daughter was waiting at home.

-There is much talk about research into the causes and cures for autism throughout the film. The fact is I don’t need to be cured. I am not a burden. I am not a living hell. I am not a science experiment or someone who cannot communicate. I am a college student, a writer, an artist, a friend-to autistics, neurotypicals, Downs people, dyslexics. I am a flautist. I am an employee, and I am several things that Sounding the Alarm doesn’t mention. This is not raising awareness. It is scapegoating, fear-mongering, and comes from people who do, at best, the bare minimum of what’s expected of them. If their rhetoric of autism being the equivalent of a tsumani or a burden is changing the lack of autism services, why are they still complaining about it? Autism Speaks has lost key members now such as John Elder Robison, author of Don’t Look Me in the Eye, and noted blogger of A Diary of a Mom, who spent years trying to reform Autism Speaks, after Autism Speaks co-founder Suzanne Wright made a speech to George Washington University claiming, “If three million children in America one day went missing – what would we as a country do? If three million children in America one morning fell gravely ill – what would we as a country do? We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.  We’d leave no stone unturned. Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.” Followed by saying, “Maybe their child has been trying to bite them or themselves. Maybe they can’t afford the trip to a doctor specializing in autism. Maybe there is a waiting-list for ABA, speech and OT. Maybe their insurance won’t pay. Maybe they don’t have the money to pay a special lawyer to fight for school services.” This speech sounds very Hitlerish to me. If you were to hear Iranian leader’s “Death to America” speeches hosted by Duke University’s political science program, then you’d see how I feel about this movie.

A Real Call to Action: How a Certain Summit Address Should Have Gone

         In November of 2013 Autism Speaks cofounder with her husband Bob, Suzanne Wright, the grandmother of a child with autism (where's baby girl in all this?) made a speech at a policy meeting at George Washington University where she spoke of autism as an irredeemable burden that must at all costs be eliminated if families and communities are to heal. This isn’t the first time this organization has done something of this nature. Years back, Autism Speaks executive Alison Tepper Singer made a statement in The Oprah Winfrey Show where she said that when she found out her daughter had autism, in the presence of the same daughter, she contemplated driving her car with her autistic daughter into the lake but decided against it because her neurotypical daughter was waiting for her at home. Singer, along with all other Autism Speaks executives, was paid a salary over $200,000 dollars a year, despite the laws applicable in the United States to be considered a non-profit organization. Meanwhile Autism Speaks produced another video from none other than the director of Harry Potter and the Prisoner of Azkaban, whose son is autistic, called I Am Autism, with narration saying, “I am autism…I work faster than cancer, AIDS, and diabetes combined, I will make sure your marriage fails, that you never hold done a job, that you never attend a church or temple.”

Naturally Suzy’s little accident caused hoards of former Autism Speaks members to leave the organization and withdraw all their funding for it. Most prominent among them were Autism Speaks only openly autistic member John Elder Robison, author of the bestselling book Don’t Look Me in the Eye, and the father of a college student with Asperger syndrome, who lives on a campus apartment with his girlfriend, who also has Asperger syndrome, and a mother of an autistic girl, who Miss Suzy hugged at the summit despite the girl’s objections, and author of the popular autism blogA Diary of a Mom, describing her liferaising two daughters, the youngest of whom is autistic. Both of these parents spent years trying to reform the organization from within and the pageant girl’s book report was simply the last straw.

                A Diary of a Mom has dealt with numerous critics, perhaps people asking, “What was little Suzy supposed to have said?  She wanted to raise awareness.” Well Jess, the blog’s author, has recently coined a phrase (not so new really) to apply to the world of autism, “Love, not fear.” A whole post, where Jess, who admits to worrying that her daughter would never live on her own, had what I, a flag-waving autistic pride believer, call extreme autism acceptance. That can be understood though, as her blog goes clearly into all the way her daughter Brooke has enriched her life, the view of love, as opposed to autistics as threats who must be neutralized, ol’ Suzanna’s view of fear. If she had spoken with love, rather than fear (two things that Bible says are mutually exclusive, maybe her speech would have sounded more like this:

                If one in eighty-eight people [not children] were missing, we would have a national crisis. Well we do: autism discrimination. Maybe they are the people are the people we raised from diapers.  Maybe they are the people who raised you from diapers. This is autism. Maybe they are the person who stared in our production, modeled our products, saved our sick pet, treated our depression, worked with our child with special needs. Maybe they are the person we teared up next to as we said vows at the altar, who held our hand at movies, who held us when we suffered tragic losses of friends or family, who we began a family with. Maybe they are the people we saved from addiction as we believed in them so uncompromisingly that they could heal. Maybe they are the people we knew from diapers, roommate in college, godparent to our children. This is autism. We are facing a national social injustice. Hundreds of thousands will soon grow up without access to jobs, education, or housing. This is a call for action.

End of speech.

                Clearly Mrs. Wright has somewhat of an adorable 1940’s view on disability. Rather than simply children (moreover children who burden you economically), autistics are workers, teachers, counselors, doctors, husbands, wives, boyfriends, girlfriends, friends-with-benefits, fathers, mothers, coreligionists, authors. Basically autistic people are human beings! The fact that autism is associated with financial stress by even comfortably middle class people is not doubted. The fact that for every person to see their loved one discriminated is not doubted either. It’s torturous! No human should have to suffer that. But the fact that autistics, as Suzanne is saying, are merely objects of parent’s (usually/always moms) distress is completely wrong and dangerous. Yet so many people say, “But, Ben, Autism Speaks has raised so much money (that they’ve raised money-can’t argue with it-what they’ve done with the money) and they have so many celebrities who endorse them.” Well videotape my swimsuit areas and call me a Scientologist! I believe in them!

                Now let’s assume, for the sake of argument, that you are a hardcore fanatical fan of Autism Speaks, who admits they have flaws while exhibiting redeeming qualities: you ask me Is there something to fear? Yes! I fear for you! Any organization that spreads stigma works against the best interest and the needs of autistics and the people who love them. Whether you know it or not, Autism Speaks’ corrosiveness affects you as it does your loved ones and time is running out for many people with autism to adjust to the world so they don’t have to live in such great comfort. When you’re done playing dollhouse with miss ballerina and ready to start a vocation though I’ll be happy to hear from you.

A Well-Known Autism Charity isn't all it May Seem

Many 'charity' organizations have a shameful history of acting like corporations, paying more to their executives than to the causes they speak on behalf of and end up being out in the world to promote themselves, rather than the people they talk about.  And when they spend more money on themselves, rather than on the issues, it drains communities of being able to solve these issues they are involved in and cause good real charities to go underfunded and fall apart.  
When I was sixteen, I had the fun of going to Camp Determination during the summer of 2006, funded by the Autism Asperger Resource Center, where me and several other friends, also with autism, got to swim, make crafts, practice archery, and go horseback riding.  When the fall of that same year begin, I heard the AARC closed down because they did not have the funds they needed to stay afloat.  It was around that time that the organization Autism Speaks began with their advertising and public fundraisers.
As many people will undoubtedly be thinking, "What is wrong with Autism Speaks?  They have raised so much money and gotten so large in only seven years of being around."  I have heard this rhetoric a thousand times and hope this article will make people think more clearly about the organization if they currently do not know what is wrong with it.
The group was founded in 2005 by Bob and Suzanne Wright, grandparents of a child with autism.  It's goal is "to find a treatment, prevention, and a cure for autism."  Bob Wright is a former General Electric CEO and a former NBC executive.  Despite his and his wife's claim that Autism Speaks champions on behalf of parents "suffering with autism," Suzanne Wright specifically told her daughter Katie, the mother of an autistic child and the one who suggested they start an autism organization, that she was not allowed to speak for the organization in any capacity.  This incident ended up being on the front page of the New York Times.
The truth is Autism Speaks has been criticized and condemned by over sixty disability organizations around the world.  These organizations, which include the Bazelon Center for Mental Health Law, the Autistic Self-Advocacy Network, Mothers from Hell, the Statewide Parent Advocacy Network of New Jersey, and the Elementary Inclusive Education Program at Teacher's College, Columbia University are organizations made up of autistic people, their parents, families, teachers, social workers and caregivers, the very people who would have an interest in autism.  An anonymous social worker at the Wise Mind Therapies in Kansas City once said that Autism Speaks looks more like a corporation rather than a charity.

Many people associate Autism Speaks with a desire to help those afflicted by autism. On their IRS Tax return, which all charities are required by law to fill out and publish, Autism Speaks showed that they spent 17 million dollars on executive salaries while they spent only 60 thousand dollars on services for people with autism.  And of the 68 million dollars they spent in that year, two-thirds of it went to biomedical and genetic research on autistic people.  When the organization first started, co-founder Suzanne Wright, a grandparent of an autistic child, claimed the organizations mission was "to eradicate autism for the sake of future generations."  On their website, Autism Speaks has a page devoted to honoring the efforts of James Watson, chancellor of the Cold Springs Harbor Laboratory, to find genes susceptible to autism.  Watson resigned from his position after making grossly racist remarks.  He has also had long advocated getting rid of disability which he claims is "getting rid of stupidity."  Meanwhile, all the money Autism Speaks has spent on finding a 'cure' and executive salaries could have gone to people with autism and their loved ones.  Despite this hypocrisy, Autism Speaks has the nerve to portray autism as costing families and societies as costing millions of dollars every years.

Charities that do more for themselves often rely more on sensationalism rather than honest raising of awareness about the issues they are about.  In a video Autism Everyday former Autism Speaks executive Alison Tepper Singer claimed that when she found out her daughter was autistic, she wanted to 'drive the car carrying her daughter into the Hudson River,' but she didn't do it because 'her non-autistic daughter was waiting for her at home.'  Mrs. Singer made these remarks on The Oprah Winfrey Show in from the of the daughter she professed to wanting to murder.  Mrs. Singer also claimed that if you have an autistic child, you are twice as likely to get divorced.  Apparently, it is an autistic child's fault if his or her parents cannot resolve their issues together.  As if that were not enough, after Mrs. Singer made her notorious statement, two Autism Speaks board members came onto Oprah's stage and claimed that after having found out their children had autism, they frequently wished their children would drown in the plastic pools they played in.  Mrs. Singer resigned from Autism Speaks but only after she disagreed with their long-held conviction that vaccines are the cause of autism, which has led to thousands of children across the world dying because their parents did not give them vaccinations.

Autistic Self-Advocacy Network protests Autism Speaks a Ohio State campus

The organizations adds have also compared having an autistic child to being struck by lightning or being in a fatal car wreck.  In the video I am Autism another Autism Speaks video produced by filmmaker Alfonso Cuaron, who has a son with autism, the narration said, "I am autism!  I work faster than AIDS, cancer and diabetes combined!" (emphasis added)  This video was unfortunately showed at the United Nations 2006 Autism Conference to first ladies from around the world.  To Autism Speaks apparently, dying of cancer is a much more preferable fate then having autism.

Autism Speaks has long used the element of fear in order to convince people that what they say about autism is true.  They have a history of claiming that autism is rising at a rate 'never seen before,' in order to spread fear of this condition, a view at odds with modern psychology, psychiatry and sociology, which sees autism as having appeared to be larger because of changes made to the DSM in 1994.  Studies have recently shown that there are as many adults with autism as children.  Unfortunately, the notion Autism Speaks claims to be true would lead people to believe that there are more children with autism than adults, which could mean that adults wit autism will not get the services they need because so few people know they exist.
Unfortunately charities in it for themselves have another dark characteristic, which is they seem to be made up almost entirely of people who are the least affected by the issue they revolve around.  Currently Autism Speaks is not made up of any autistic members, whether in their board or general membership.  If Autism Speaks were a charity organization of those most affected, they would include largely autistic people, but also their parents, relatives, spouses and children, as well as social workers, teachers and caretaker.  Yet Autism Speaks seems to only have parents and only parents with their persuasion on autism serve on the board of Autism Speaks.  Ari Ne'eman, head of the Autistic Self-Advocacy network claims, "Autism Speaks talks about us without us."
As with other pseudo-charity organizations, Autism Speaks wants to protect their image at all costs.  In 2008, an autistic teenager started a website called Neurotypicality Speaks parodying the policy of Autism Speaks of having only non-autistic members on their board.  After she set up the website, thirty Autism Speaks lawyers wrote to her threatening to sue her, an autistic teenager, for $90,000 for copyright infringement if she did not shut down the website.  As the website was a parody, the threat was legally absurd and as far as most people with autism are concerned, the girl was merely expressing her opinion, making her within her right to free speech.  The girl did shut down the website, but only because Autism Speaks was better suited to influencing the courts with their vast sums of money, not because they had a superior legal case.  Autism Speaks, like a corporation, used it's money and power to influence the minds of America's legal system.  A few months later, Autism Speaks threatened to sue a website called Zazzle for copyright infringement because they had a line of shirts which said, "Autism Speaks can go away.  I can speak for myself." 
Like a corporation type charity, Autism Speaks spends more money on themselves, use sensationalism, rather than honest facts to promote their views, exclude people who are most affected by the issues they talk about, and work harder to protect their image than the welfare of the people they talk about.  To me, we should judge charities not by what celebrities endorse them or how many, but whether they go out of their way to help those afflicted by what they talk about.  Instead of judging them by how much money they raise, they should be judged by how they make that money and how they use it.  I hope people learn about the reasons why Autism Speaks is not worth supporting because I believe in a world of dignity, rights, access and opportunity for people like myself who live with an autism spectrum disorder.  There are much more worthy autism organizations such as the Autistic Self-Advocacy Network, the Autism National Committee and GRASP.  Hopefully people will learn to stop investing their money in organizations like Autism Speaks so that these organizations will not go the same way as the AARC and societies will get closer to having the awareness and support for people with autism to thrive without having to change their abilities.

If you would like to do more for autism you may help two boys who were physically abused by a teacher in order to remove his autism at http://www.change.org/petitions/my-son-was-restrained-and-put-in-seclusion-yours-could-be-next/ and http://www.change.org/petitions/end-abuse-of-autistic-students-in-mercer-county-kentucky/