| TIFFANY PINCKNEY 23, starved by her sister, 2005. | ZAIN AKHTER 12, Strangled by her mother, July 2010 . | AJIT SINGH 12, forced to drink bleach by his mother. February 2010 | BENJAMIN BARNHARD 13, shot by his mother, August 2011 | BETTY ANNE GAGNON 48. tortured to death by her sister and brother-in-law. November 2009 | CALISTA SPRINGER 16, smoke inhalation-chained to her bed by her father and stepmother, February 2008. | CHASE OGDEN 13, shot by his mother along with his sister Olivia, October 2010 | CHRISTOPHER DEGROOT 19, locked in apartment set on fire by bis parents, May 2006 . | CHRISTOPHER MELTON 18, gassed by his mother. June 2010 | DANIEL CORBY 4, drowned by his mother. March 2012 | FARYAAL AKHTER 2, strangled by their mother, July 2010 | FRANCECCA HARDWICK 18, locked in a burning car with her mother, October 2007 | GEORGE HODGINS 22. shot bv his mother, March 2012. | GERREN ISGRIG 6 years old, died of exposure after his grandmother abandoned him in a remote area, April 2010. | GLEN FREANEY 11, strangled by his mother. May 2010 | JEREMY BOSTICK 11, gassed by his father. September 2009 | JEREMY FRASER 9 years old, died of recurrent leukemia alter his mother withheld the medication that would have saved his life. March 2009 | JORI LIRETTE7, decapitated by his father, August 2011. | JULIE CIRELLA 8, poisoned by her mother. July 2011 | KARANDEEP ARORA 18, suffocated by his parents, October 2010. | KATIE MCCARRON 3 years old, suffocated by her mother. May 2006 | KENNETH HOLMES 12, shot by his mother. July 2010. | KYLE SNYDER 9, shot by grandmother, October 2010. | LAURA CUMMINGS 23, tortured to death by her mother and brother. January 2010 | LEOSHA BARNETT 17, starved to death by her mother and sister. May 2011 | Melissa Stoddard 11, tortured to death by her father and stepmother.December 2012 | Matthew Graville 27, tortured to death by his half brother, July 2012 | NAOMI HILL 4, drowned by her mother, November 2007 | NOE MEDINA JR. 7 months, thrown 4 stories by his mother, August 2011 | PAYTON ETTINGER 4, starved by his mother, May 2010 | PETER EITZEN 16. Stabbed by his mother. July 2009 | ROHIT SINGH 7, beaten to death by his father, September 2010. | ROBERT ETHAN SAYLOR 26, asphyxiation during catastrophic police encounter, January 2013 | RYLAN ROCHESTER 6 months old, suffocated by his mother because she believed him to be autistic, June 2010 | Paul Childs III 15, shot by police while holding a knife pointed at his own chest, July 2003 | SCARLETT CHEN 4 years old, drowned by her mother, July 2004 | CHRISTOPHER MELTON 18, gassed by his mother. June 2010 | STEVEN SIMPSON 18, doused with tanning oil and set on fire during his birthday party by party crashers, June 2012 | Steven Eugene Washington 27, shot in catastrophic police encounte. March 2010 | TONY KHOR 15, strangled by his mother, October 2009 | Torrance Cantrell 8, killed by church parishoners during a brutal exorcism, August 2003 | TRACY LATIMER 12 years old. gassed by her father, 1995. | WALTER KNOX HILDEBRAND JR 20 years old, died of a seizure induced by his brother's physical abuse. November 2009 | Alex Spourdalakis 14, stabbed to death by his mother and caregiver who premeditated his murder and also killed the cat, June 2013 |ZAHRA BAKER10, murdered and dismembered by her stepmother and perhaps her father. October 2010.ERNEST VASSELL10, shot in a catastrophic encounter with police. September 2011.

Friday, April 4, 2014

Open Letter to Sesame Workshop

Dear Ms. Betancourt,

I read today that Abby Cadabby and the characters of Sesame Street will be "lighting it up blue" and collaborating with Autism Speaks and my heart broke for my son. I know that as Sesame Workshop’s senior vice president for community and family engagement you may feel you are embarking on a great project. But this is devastating for the thousands of families like mine who used tools already in place that were developed by Sesame Workshop and PBS to help our children learn. I don't know what prompted this partnership but it concerns me very much because the goal of Autism Speaks is to eradicate my son. Left up to Autism Speaks, he would not be alive right now. So Sesame Workshop will be assisting in the process of increasing the resentment and hatred directed at my son. As if this were not enough, Autism Speaks, who have labeled my son and all children like him some manner of body snatched replacements of  "normal" children, will profit from your brand? I just don't understand.

My son and his peers are given no representation in their organization. His existence is used as some sort of a detriment to society. Autism Speaks continues to present him as someone who should be feared or pitied for who he is.  Sesame characters have always been in the forefront of inclusion and forward thinking. This partnership is a giant step backwards for your wonderful company. Autism Speaks cannot represent my son's interests if they believe he should not even be allowed to exist and be included in society right now as he is. Autism Speaks challenges his foundational human right to exist; this is not inclusion or acceptance of developmental difference. This is an approach to advocacy that makes my son and his peers feel denigrated and ashamed each April. How can your company support propagating this?

Just the statement that your organization  "said it will use Sesame Street’s brand and characters to educate the public about autism and emphasize that kids on the spectrum are much like their typically developing peers" shows a basic lack of understanding that my son and many others like him are not like their typically developing peers. That is the point. That is what needs acceptance from society and representation in society in general and Autism Speaks in particular. My son is not like his"typical" peers. Sometimes people are never "like their typical peers".  I thought that Sesame Workshop, of all organizations would understand that and not work with organizations that insist that those they claim to represent are defective if they are not able to mask their differences. To Autism Speaks, his degree of disability is not acceptable.  I am so beyond disappointed in this turn of events.

I carry the label Black of hispanic origin. I know Sesame Workshop would never promote or support any organization that presented this combination of my racial and ethnic background as something to be feared, repressed, or made to conform to a standard that obliterates my personhood. So why is this okay to do with my son? He cannot conform. He is too divergent. Is he therefore to be erased in society? Should he be made to feel diseased? Please do not be complicit in this.

Sesame Workshop prides itself on its "long history of addressing diversity, acceptance and inclusion". Did you not wonder why autistic activists, other autism organizations and parents weren't included in these negotiations? I hope you will reconsider this partnership. If this announcement had been made after negotiations with a partnership of all autism organizations at least it would have  included representation from my son's real peers, autistic adults who like him, cannot hide their differences, any more than I can hide my racial and ethnic origin.  

Please reconsider this decision. I doubt you'll ever see this letter, but I had to try to reach out before for my son's sake. 

You see, I love my son very much. I'm proud of him. He can't hide who he is. And frankly he shouldn't have to.

Sincerely,

Mrs. Kerima Cevik
Former Sesame Workshop supporter and consumer

Monday, March 31, 2014

Autism, Competence, Adding Kemal to Mustafa

A very long time ago, a mathematics teacher, Captain Üsküplü Mustafa Efendi gave his best pupil, and boy named Mustafa, the additional name Kemal, a name with a depth of meaning that I will simplify and say means maturity. This Mustafa went on to be given the name Ataturk, meaning "father of the Turks".  When our son was born, we named him Mustafa. We did not know then he was neurodivergent. We felt, if he could carry the name well, and became the young man we hoped he would be, we would add the name Kemal. Because maturity is not born. It is earned.

I have said before that my son Mustafa is a heroic figure. Born in a day and age when having a name like Mustafa makes you the target of instant emnity, he orchestrates his life in rich, ripe, silences, punctuated by occasional gifts of a word, sprinkled like salt and pepper over good soup. His hands flap as he conducts the symphony of the day that he has selected on his computer and he stands to do so. He is free to be himself at home, and because he is imposed upon so much outside our home, certain spaces, like his bedroom are his to control except of course for cleaning them, which is a joint effort. 

The most heroic scenes in Mustafa's life do not take place in public. They aren't video taped and uploaded for viral video potential. No, those episodes happen quietly, at unexpected moments. This is the month when you'll hear the worst things about my son and his peers. He is after all the most apparently autistic young man. He cannot hide his neurology. So I wanted to share one of those moments because something good needs to be said about my boy right now before the landslide of negativity and fear buries us.

I have been ill, and combined with fatigue, it has made it rough to go through my scheduled days with Mustafa. He senses this and has begun doing small things to compensate for the slowness in my movements and the times when I must sit and wait. I had reached a moment when pain shot through me and I sat down with the shock of it. Then Mustafa did something surprising. He sat next to me a put his arm around my shoulders. He sat with me until the pain passed. He pushed me sideways indicating I should lay down. When his father, concerned at the sudden quiet found us Mustafa had covered me with a blanket, returned to his room, and was sitting back down at his computer, continuing to go about his business as if I was with him. He would occasionally stand by my bedroom door, checking on me.  He did not request any assistance from his father. It stunned me. His father assumed I had wrapped myself in the blankets and fallen asleep. I had not. Mustafa simply did for me what I do for him. He realized I needed to rest.  He took care of his mother.

In his life, with its professional presumption of incompetence, these moments are heroic because they fly in the face of assessments that insist data driven observation knows who he is and what he is capable of feeling and doing. His range of knowledge, capacity for empathy, or what he might do if allowed to make his own decisions to the degree he can are all glimmering in these moments of greatness.  Mustafa is eleven. What he did for me is beyond the scope of what many eleven year old boys today would stop to access and do. 

A few years ago I spoke to my husband about the idea that should Mustafa master communication we might add the name Kemal to his name. I don't think we need to do that now. He has matured without the name. Mustafa kemale ermek yolunda. Meaning Mustafa is on the road to maturity.  Happy Autism Acceptance Month my son.  Thank you for taking care of me.

Love,
Mom


Sunday, March 23, 2014

Surviving the "Sounding The Alarm" of Blue Fear - I Won't Be Lighting Anything Blue April 2nd

It is a bit ironic that having been born into a Catholic culture, one of my favorite litanies is one created for a fictional religious order. It is the Bene Gesserit Litany Against Fear, and goes as follows:

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.

I will face my fear.
I will permit it to pass over me and through me.

And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.

Only I will remain.
from the novel Dune by Frank Herbert
Each year beginning the second of April, Autism Speaks rolls out the apocalyptic fear of epidemic pestilence circus. Everywhere my son goes, he will be hit with the news that he is the most unwanted person on the planet. He is a reason to to panic, to fill the coffers of Autism Speaks with funding to assist them in spending millions of dollars on ads, signage, slick lobbying campaigns all to silence any voice but that of their understanding of what they want. Because of course what I or any other autism parent wants, what my son or any autistic person wants doesn't matter. It only matters what mega charities who don't represent autistic people, and lately don't represent a growing number of families want. If you don't believe that the rate of autism is rising at such an alarming pace that if we don't eradicate it everyone in the world will be autistic, well then you are forcibly silenced.
Yes, my son and the majority of his peers will be donning their headphones against the noise, the flashing seizure inducing insulting spectacle that will drag on. All month people will be telling me that my son should not have been born. Because he doesn't use verbal speech, he is less than others. He needs to be dealt with. And they want everyone to know that. Well that is all a crock. We are not doing it.
Fear is the downfall of civilizations. It is the catalyst of ignorance. Fear driven campaigns serve no more purpose than fear driven research. We the parents and loved ones of autistic people, have tremendous power that we choose to passively give up to mega charities who claim to speak for us. They don't. What we should be doing is looking at what our people need. Where the millions of dollars in both federal funding and the funding well intentioned people will be raising in April should go. I for one would like to stop giving organizations the money to promote messages about autism that are harmful to my son and put him at risk for being harmed because he is different. "Sounding the Alarm" presents my son as having some variety of infectious disease and Autism Speaks has tried to make their voice crush mine by using a research psychologist and medical model verbiage.  If others can't accept that loved ones are different that is on them. Do they then have the right, by virtue of power and societal position, to dictate what happens to my son? No they do not. I am tired of my son having to go through this every April. He has enough challenges without the stress of Loud Blue Ableist April. 
Pity is almost as dangerous an emotion as fear. Pity distances people from its object. Pity dehumanizes. April Autism Awareness month as it is practiced now says "Pity my son and his peers." "Fear them." "Mourn the way they are"." Give up your right to advocate for your children". "Your children should not exist"." Why do we allow this to happen? Stop letting others tell you what autism month should mean. Cease allowing any mega organization to control the conversation about your loved ones. Don't let them treat your children like side show attractions at a circus. Teach them the difference between pity and compassion. Teach them the difference between fear and respect. 
What we need to do on April second is to take the money we would spend on blue light bulbs and give it to any local organization that has done anything directly to help your autistic loved one. Because when you buy anything blue next month part of that money is going to find its way to Autism Speaks. You will be giving Mrs. Wright and the tragedy wagon another year to peddle their alarm of doom and gloom to anyone who will give them funding in return. Well don't you want your loved one to have that funding? Then stop spending it on blue light bulbs! Stop dying your hair blue. Just. Stop.
What we will be doing on April 2nd is telling everyone we are not ashamed of our son. We loved him before he came into this world. He is a wanted child. We want him to succeed. He is in the fight of his life to be able to grow up and live as autonomously as possible. He deserves better than a month of mourning about the fact that he exists. I won't subject him to that shit. It isn't going to happen. 
I am a proud autism mom. Proud. If you love your children, then support the idea of an autism month that promotes respect for them, presents them as people with the right to live in society as everyone else does. Support funding going to research that is centered on them and creates a better quality of life for them. Look as organizations that directly help them and have people who are like your children in decision making positions. Because those people know what the future holds for your children when they grow up and they want your kids to have it better than they did. Respect that.
 Each time I hear Autism Speaks this song I used to hear on Hee Haw seems to be playing in the background. Here it is:
(video description: four white males in overalls and hats holding white jugs of moonshine singing "Gloom, despair, and agony on me, deep dark depression excessive misery, if it weren't for bad luck I'd have not luck at all, gloom despair and agony on me.. while a man wails in tune to the chorus)
It began and ended a comedy sketch. Autism month needs to rise above the melodramatic and tragic. So my idea is that you join me in doing your own thing this April. Start here:

s
take this and add your favorite family photos. Tell people what makes you happy about your autistic loved ones. Show them. Give hope and support to families not despair and imaginary scenarios of horror and doom. 

Much Love

Monday, February 24, 2014

Free Your MInd

Our children are growing up and growing old. As fun as it was to watch them as infants and sweet young children, we have to accept the fact that our children are growing up and will age. My son is on the brink of becoming a teen. What I have spent the past three years doing is asking myself what kind of quality of life and standard of living I want my son to have when he is grown up.

Part of the reason for my unusual point of view in this blog is an attitude driven by the idea that I want my son and everyone who is disabled to live as autonomously as possible. I want my son and all his peers to experience the best quality of life they can. I want my son and his peers to have the opportunities to succeed and excel in life without losing health benefits, food stamps, and other supports that sustain them. I want my son to be completely included in our community and respected in society as he is. I want my family to understand that my son's future should not be tied to anyone else's. The world should be such that he can live his life without feeling he needs me to be alive to live it with joy. No one, not even his mother, should make him feel dependent. He should feel empowered.

This attitude is why, when being asked something by Landon Bryce one day a long while ago,  I was unable to answer. It had to do with whether I considered myself an autism parent blogger. I really dislike the term "Autism Mommy Blogger". I didn't want to be called that. Because it is used in a derogatory way, to diminish the women blogging. The majority of these women are highly educated authors, journalists and career women who made life changing decisions to be there for their autistic children. Others are dedicated stay at home parents who are self taught advocates for their own kids. None deserve to be marginalized because thousands of other parents read what they write and hold it in higher regard than someone with a background in journalism or science who is not autistic, or has not parented an autistic child. But facing this question from Landon, I could not put this all into words. I could only say, that I did not want that label. I did not want my son to be diminished by my blogging about him. And not all mom bloggers understand that attitude or care. Some are destructive of their children in their blogging and I did not want to be part of that either.

So understand that blogging was something I started to help gain a voice for what I thought my son and his nonspeaking autistic peers deserved for their future as adults. I don't believe a goal of living above the poverty line is an unreasonable goal. I don't think living autonomously is an extreme goal for a nonspeaking autistic person either. In fact I know nonspeaking autistic adults who do live autonomously in their own homes. So the question was how could I write to explain this to other parents? How could I make them understand that the rhetoric they have been given all their lives, that they must somehow survive beyond all hope and be healthy because their lifework is now to be a caregiver for their nonspeaking autistic child for as long as that child is alive is a recipe for disaster? How do I make other mothers see that there is a better future for their children that does not necessarily include them? Because once the problem is defined properly, it can be solved. Autism parents are determined, tough, patient, and focused people. Imagine if all these characteristics were bent towards finding a solution to the problem of where their children could live out their lives autonomously and how to keep them living a good quality of life. I felt that if I could accomplish that change in thought process and attitude, all our children would be safer, happier, and included in their own lives. Parents would be relieved, less stressful about the future, happier now.

So far, I've failed to reach most adults. Perhaps that is because I am not writing about the tough day to day aspects of being an autism parent. Maybe because I am saying I love my son as he as and am proud of him. Or that I reject Autism Speaks, who does not seem to get the faintest idea of how to advocate for my son and his peers because it refuses to include autistic adults in the leadership of their organization, which professes to advocate and speak for them. I do not know, but I do know that I am not reaching the people who I wanted to try and tell that life does not have to be as others have said it will be for our children. I now wonder if I should simply cease trying.

I don't really know where to go from here.  Maybe I should spend some time telling you all what is already out there that can change your children's lives right now. Right now, as state and federal governments are cutting funding from developmental disabilities programs (click me), autistic adults are teaming up to live autonomously and support one another living as independently as possible. Parents of nonspeaking autistic children are having that conversation about coaching their children in day to day life skills now. All that is great. But there is something we can all do right now. We can fight to insure that by the time our children grow up, they are paid what any other worker is paid for equal work. We can fight to insure that all our nonspeaking autistic children are assessed and accommodated with AAC devices and that the law insures that their speech devices are never removed from their reach. We can form communities for autonomous living as parents and built our own cohorts of classmates, playmates or friends that can live together and share a home or large apartment and adapt the homes for them so they can live as autonomously as possible.

We have right now, so much technology that can make a nonspeaking autistic adult autonomous. We are just so focused on the tragedy model scenarios of us carrying our children on our backs for their entire lives that we are not demanding our schools prepare them for life on their own. Our children are ABA "therapy-ed" into learned helplessness. We are fed a litany of what our children cannot do to such an extent that we become helplessly trapped in a mentality that says our children will need us until they die.That mindset is a type of learned helplessness as well.

We now have driverless cars that use GPS and onboard computers to navigate traffic. We have robots that clean carpets, toilets that flush themselves, all in one machines that can wash, dry and even steam clean laundry. We have dials on showers that keep users from dispensing water hot enough to burn.  No autism parent is thinking about how these things can make their children's lives more autonomous. What is out there is literally thousands of autism blogs saying the same sad and tragic things. I don't want my blog to be one of the thousands abandoning hope and wallowing in despair.

How can we change things right now? How can we make a future for our children that no one believes is possible? First change our attitudes of what the future means for our children. Yes, our nonspeaking autistic children can live well without us. Yes they can. If we help them. Believe your child can leave home just like any other child. See yourself being proud of your grown child living autonomously. Then join me. I"m telling you what is out there for them will blow your minds.

Saturday, February 8, 2014

Open Letter to The White House and The Department of Labor

Hello!

I am writing to urge you to include workers with disabilities, including those now making less than minimum wage under Section 14(c) of the Fair Labor Standards Act, in the President’s forthcoming executive order on a $10.10/hour minimum wage for government contractors.

I am the Black mother of an autistic, nonspeaking son. I lived through a time in American history when my race was used as a reason to give me less than a living wage while coworkers who were white were paid much more. To live now and realize my son will become a man only to remain in poverty is too painful to believe. I doubt any of you will read this open letter. But if you do, imagine being me, and thousands of mother's like me, of all races and ethnic backgrounds. Our children deserve better than what I was subjected to. Their disabilities, like my race, should not be an excuse to bar them from equal pay for equal work.

Sincerely

Mrs, Kerima Cevik
Proud mother of Mustafa, 11, Autistic

Monday, January 27, 2014

Neurodivergence and The Term Normal

Young girl to Azeem:                          "Did God paint you?"
Azeem (Morgan Freeman):                  "For certain."
Young girl:                                           "Why?"
Azeem:                                                 "Because Allah loves infinite variety."

- "Robin Hood Prince of Thieves"



I'm on a mission to throw out the word "normal" from vocabulary and dialog related to autism. The main reason is no matter where I travel in the world or who I meet, I have never come across a "normal" person. The word normal in the lexicon of autism is used to denote an idealized average child. Neurodivergent children, like human skin colors, cannot be based upon any ideal. There is too much infinite variety in everything else about us. Why should our neurology be any different? 

Image Description: Series of photographs of people of widely varied colors under each person's photo is the Pantone number that exactly matches their skin tone ©Angelica Dass pantone skin color spectrum chart


Artist Angelica Dass has raised the bar on cataloging the spectrum of human color variation with her Humanae project. There is no one in any discipline that serves the autism community cataloging and mapping the spectrum of neurodivergence in people.  When research is done on neurodivergence it is never done with the intent of cataloging divergence as variation and recommending accommodation and support where neurology poses barriers to inclusion.  We do not have a map of  the spectrum of divergence in neurology. As long as we fail to properly study the human brain before making sweeping decisions, such as creating and prescribing medication to suppress and "correct" things we don't understand,  the term autism will continue to be used as a multimillion dollar medical model cash cow boogie man that is of no benefit to either neurodivergent people or their families. To set a standard mid point in a bell curve of what constitutes "normal" brain function without cataloging the entire spectrum of human brain variance on this earth is a bizarre way to go about science. An interaction I just had with my neurodivergent son brought to mind the reason for this part of the culture of ableist viewpoints in perception of neurological difference. Most research is done without the input and needs assessment of autistic people themselves. So they have no voice in what is and is not done with regards to the idea of accepting variations in neurology in general and diverse autistic expressions in particular.

Before you rush to say you know of any "normal" person start by defining what normal is in your mind. Look at your neurodivergent loved ones as who they are. Then see about supports and accommodations that will help them gain societal inclusion, autonomy and self advocacy. 

Peace



For Sharon da Vanport

Tuesday, December 10, 2013

To Autism Speaks, from the "Woman of Color"

When I was 12, I was put on my class debate team. One of the first concepts we were taught was the difference between debate or any manner of constructive dialog and a shouting match. Rule one was to be informed, and never launch personal attacks on the individuals presenting the opposing view. Character assassination always lost the debate.

Perhaps everyone has noticed an increasingly large number of autism organizations, autistic disability rights advocates, parent advocates, and autism families are calling out Autism Speaks. Any nonprofit organization being criticized for any reason, should above all be both transparent and receptive to the concerns and criticism of anyone, particularly the population it professes to serve. It should listen to the families it demands fundraising efforts and donations from. Autism Speaks is not doing so.

Just to summarize, what Autism Speaks did this time was launch a campaign to control public policy on autism beginning with a massive lobby effort taking the form of a "policy summit". What is wrong with this is that there are a great many other autism and disability related nonprofit and advocacy organizations who have autistic board members and diverse representation. Autism Speaks had no right to try and dictate policy alone. The right thing to do would have been to call a summit inviting all autism organizations and try to agree on policy. I say this because Autism Speaks has no autistic representation. I want to be clear on this. John Elder Robison was never made a member of the board of Autism Speaks. A careful inspection of autistic adults working with Autism Speaks will show none being given any true leadership role. They are given the specific message of promoting the medical model of autism, and must first show they are willing to propagate Autism Speaks' view of autism in order to gain grant money or support. They must at the very least, not argue with Autism Speaks. This is qualitatively different from being a decision making autistic member of the board.

During Autism Speaks' lobby invasion of Washington D.C., Mrs. Suzanne Wright signed her name to a blog post so heinous that the entire autism community, even parents who formerly supported Autism Speaks, reacted in outrage. I did as well (click here to read more). It was inexcusable. We have moved beyond that horrible time in history when disabled children were presented as tragic figures, and the fear of a world full of them used to gain some financial or other benefit for a nonprofit. Rather than respond to the genuine concerns of families Autism Speaks ignored them. No concern has been expressed about John Elder Robison resigning from his association with Autism Speaks. Were I a board member that would concern me greatly.  I wondered why board members were not reaching out to those they accepted membership to serve. Then I inadvertently ended up in a brief written exchange with a board member and understood.

When I stated that efforts by legislative advocates, disability rights advocates, autistic legislative advocates, lawmakers, and parent advocates to mandate insurance reform began years prior to Autism Speaks' entrance into public policy, and what in fact Autism Speaks had done was co-opt those efforts, take them over, and then claim organizational victory when reform was passed, the reaction of the board member was swift and vicious. Not knowing what was coming, I followed with the statement that Autism Speaks had no autistic members on its board and no diversity either, except for a female celebrity. In response to this member's comment that autism was a spectrum that sometimes was just "quirks" to be accepted and embraced, but all too often it was a nonverbal child with serious behaviors who needed a great deal of help, I reacted by saying that my son was one of those nonspeaking children that he was presenting as tragic and outside of acceptance and embracing. I pointed out that as a woman of color,  I was part of a population that was similarly maligned and he might not want to imply that my son was not worthy of acceptance. His response to was attack me personally. He went as far as using a common stereotype, saying that I attacked everything real or imagined, implying I was just the angry Black woman. He clearly has never read my blog.  Remember what I said earlier? If you feel you are losing a debate, never fall to personal attacks. In this case, the exercise of attacking an Afro Latina autism parent advocate served no purpose but to silence by insult. Hopefully this was not an example of how other board members or Autism Speaks itself handles criticism of its methods or shortcomings in its organization. In order to threaten and demean "woman of color" was placed in quotes in his response. Apparently my race, in his mind, does make me less than others and my son's degree of disability was not worth dealing with when not used as an excuse for appropriating my son's right be represented by his peers.

Right now people are saying in a very loud, unified voice, that Autism Speaks not speak for other autism nonprofits on what national autism policy should be. They are asking that Autism Speaks not speak for autistic people until it can show representation in the decision making levels of its organization, Not presenting autistic people and segregating them to projects and throwing funding at them. There is a difference gentle people. Demand more. "Don't be tempted by the shinny apple, don't you eat of the bitter fruit", as Tracy Chapman sings. Autism Speaks has a great deal of soul searching and homework to do. Here in summary is what I see as needing work:

1. Autistic Board Membership - There are great professional autistics who are wealthy, you know, like the rest of your board members. Find them
2. Diversity within the leadership and membership of the governing board: When I say "woman of color" I am being inclusive of all nonwhite racial groups. Autism Speaks has no Asian or indigenous  board members. I am also including ethnic minorities, I see no apparent Hispanic representation either. What about LGBTQ leadership? The present board membership does not reflect the population of members being supposedly spoken for.
3. Autism Speaks has no right to drive public policy on autism exclusive of other autism organizations, particularly those existing self advocacy organizations who truly are speaking for their members. (read more here)
4. It is time to  stop the tragedy model of fundraising. Stop using fear to raise funds too.
5. Autism Speaks should try dialog with those who have justifiable grievances against them rather than launching attacks on those who criticize the organization.

Although I am just a "woman of color" with a "nonverbal son needing a great deal of help", I continue to stand with autistic disability rights advocates, organizations and autism families demanding a sponsor boycott of Autism Speaks until these issues are addressed and resolved. Addressing the issue does not mean demanding those protesting on twitter have their accounts blocked, or using corporate strong arming to block protest. I continue to demand Autism Speaks respect parents of color and their nonspeaking autistic children.

Signed,

The "Woman of Color"