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 maturing 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.

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"

This is Autism

image of the words This Is Autism

My issues with Autism Speaks as an organization have a very basic root. Two grandparents who hate autism and want to eradicate it founded Autism Speaks.  Everything Autism Speaks has done since February of 2005 has been driven by a view of disability in general and autism in particular that is antiquated and is causing great harm when the intention is to do good for the autism community.

My amazing son was diagnosed with autism before Autism Speaks was founded.
He is autism.

Image description: multiracial male child
sitting with back to camera wearing a Baltimore Raven's cap

Before Autism Speaks began its avaricious acquisitions of every nonprofit raising funds for autism research, prior to their overwhelming, depressing presentation of autism to the world, our family lived, loved, and sought out people and organizations locally who really helped improve our son’s quality of life. Our son has gotten opportunities to swim, acquired needed supports and adaptive equipment, all because of nonprofit organizations and autistic activists that most people have not even heard of outside of our area. None of these organizations were Autism Speaks. People have taken him to Amish country, given him trucks, pumpkins, hugs, stuffed bears, books, iPad apps, and holiday lights. But the most important gift he’s received is one that Autism Speaks refuses to give: respect.

When people learn my son is autistic and has a great many challenges, their first response is to encourage me to raise money for Autism Speaks. My son cannot be near that loud assault on everyone’s senses that is their annual walk in D.C. I can’t be there. It is, like everything in the Autism Speaks brand, very unfriendly to autistic children and adults, and too much of the wrong things for the wrong reasons.

Suzanne and Bob Wright grew up during the era of the Jerry Lewis telethon fund raising approach. Children were used without thought that they were human beings and humiliated in the name of raising money for a cause. Apparently, Mr. and Mrs. Wright have not seen the documentary “The Kids are All Right”. I don’t know. I just know that from their very first nationwide public service announcement attempt, “Autism Every Day”, my family stood back in open-mouthed horror, saying Autism Speaks is not the way to help our family.

Our point of view on the statement “this is autism” is akin to that of Christopher Reeve, who drove change in the way researchers approach solutions for disability by issuing a challenge described anecdotally during a TED talk by Prof.  Grégoire Courtine.  Mr. Reeve demanded researchers think beyond the lab and “go to the rehab center, “watch people fighting to take a step” — and then figure out what he could do in the laboratory to make those people’s lives better.” Courtine makes a very critical point prior to any further discussion of his research. He describes Mr. Reeve as one of his mentors and states clearly that Mr. Reeve’s challenge resulted in an interdisciplinary approach to research on spinal cord injury.  He later makes it clear that the goal of the team is to produce a series of minute prosthetic devices that can work as any assistive technology device or support would; that is to say, the devices would assist and meet the individual needs to accommodate individual impairment and allow the brain to adjust itself and reduce the impairment. This is qualitatively different from the idea of a cure.

Autistic activists as mentors? Yes. This is autism.

One of our biggest wars in the autism community is that those insisting on driving policy, research, and decisions affecting our children’s entire lives don’t have respect for the most important stakeholders in this community: the autistic people themselves. The disrespected population includes our children. Our children, you see are growing up. These very capable, competent people, who should be seen as our mentors, are shouting the same challenge to researchers, educators, nonprofits, and caregivers who insist they speak for my son and his peers when they’ve never met him. They are saying listen to us. Listen to the primary stakeholders in this. First listen to the challenges, needs, and experiences of my son’s people. Then include them meaningfully in your decision making process.

Autism has great diversity in the way it is expressed. So each individual has different needs. How then does Autism Speaks think it can demand a national plan alone while continuing to exclude those it claims to represent?

I fight the Autism Wars for my son, the great and powerful Mu. How can anyone look at the efforts my son makes each day to gain mastery over any task and not respect him? Could you remain kind and patient while people discuss how your existence destroys lives and wail about what a burden everyone like you is? These things are said in front of autistic adults and children who can read, hear, and understand.  How dare anyone see my son as less human than the any other person? He has climbed mountains compared to children his age. He has forded rivers of impairment and conquered them. He does not want any organization presenting him as something to be pitied, behaviorally contained, chemically lobotomized. He is learning to do things autonomously. He is using technology to be independent. So how is it that someone who knows that battlefront and is a veteran of it is not respected enough to be at the forefront of any discussion about how to accommodate, include, and accept him?

Respect is autism. 
Representation is autism. 
Inclusion is autism.
Autonomy is autism. 
Accommodation is autism. 
Acceptance is autism.

These things are autism. We, our family, reject anything less.

Autism Speaks is wrong. I stand by my son and demand his right to representation in any discussion on what the future of the autistic population is. Considering that the only autistic person in Autism Speaks resigned calling on Autism Speaks to respect autistic people and give them representation in their own affairs, I think that the  Congressional Autism Caucus, and every other stakeholder in national policy, health care, research, education, and community life should listen to people who truly represent our son.

Autistic people are autism.

Dear Autism Speaks. It is time for a road trip. Leave the bubble of your antiquated ableist views of what disability is and stop speaking for those you don’t understand. Travel the country; come as people who want to understand those who they present themselves are serving. Go to where autistic people are fighting for the dignity and human rights of their peers. Look at what is happening to families. Listen to autistic people. Listen to parents.

Most importantly, kindly stop disrespecting my son and his people.

A Mouse that Roars - Standing in Defiance of Autism Speaks

Trauma Trigger Warning for language and ableism

On November 13, 2013, Autism Speaks will unleash the full force of its corporate lobbying budget and political action money on Washington D.C.. Autism Speaks is bombarding the District of Columbia with advertising, showering universities with research funding and overwhelming the locals with overwrought, ableist, tragedy rhetoric in order to fulfill their corporate agenda. Anyone in their way will be crushed underfoot. Any person objecting to or criticizing how they do business will be legally dealt with. Autism Speaks has repeatedly made that point, and it was again made clear when they rescinded a job offer to the mother of an autistic teen who requested reasonable accommodation to care for him during her work day (click here for details on that incident).

Tomorrow, autistic disability rights activist Lydia Brown will face down this bombastic display of corporate wealth and power and try to be heard. She will stand in defiance of Autism Speaks' three day "national policy summit" that excludes the voices of autistic adults who advocate for their peers. I am the mother of one of those "children who will need help all their lives". I am an autism mother. I stand with Lydia Brown in defiance of Autism Speaks. 

Yes, gentle people. I am asking that all of you stand with us against this frightening force lumbering forward with no interest in our families or in autistic people who are growing up and aging. Autism Speaks is inhumanely imposing their idea of what our community needs and attempting to mandate everything from how my son will be housed to funding research that has no real benefit to my son or his peers. Note that no research funding is going to technology that provides more effective augmentative alternative communication devices, when the primary challenge to autistic individuals throughout their lifespan is communication. Assistive technology solutions for autonomous living are not funded by Autism Speaks research money. Mrs. Suzanne Wright refers to autistics as "the autism crisis", dehumanizing them in a most ableist manner. She goes on to equate my son and his peers, who are still very much here as being "missing", a clear reference to the highly offensive "Ransom Notes" campaign launched by New York University discussedhere. Her exact statement in this excerpt from her blog post, entitled Autism Speaks to Washington - A Call for Actionis

"This week is the week America will fully wake up to the autism crisis

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."

Suzanne Wright

Her entire disturbing post can be read here.

For all those saying that Autism Speaks is understanding neurodiversity, the message is clear that at Autism Speaks, tragedy, ableism, and fear tactics are still the order of the day. My son's challenges are enough without Autism Speaks using them to push their own agenda in his name without his voice in his own affairs. He's not lost. Only Autism Speaks has lost touch with the very autistic people it professes to represent. Autism Speaks has no autistic governing representation of any significance on their board of directors. Please take the time to read Ms. Brown's latest post here.  Read about how autistic adults were treated by people who were participating in the juggernaut Autism Speaks fundraising event machine here when these young autistic activists exercised their right to protest the event. Autistic adults are our children, grown up. Do we want our children to be voiceless and passive, accepting what people who do not understand or care about them decide about their lives? Or do we want to know that they are standing together to defend their own right to speak for themselves and control as much of their own lives as they can?

Autism Speaks promotes ABA thoughtlessly, ignoring documented harmful outcomes like learned helplessness that must be dealt with years after this intervention ends. Parents and autistics of all ages who are capable of self advocacy should be given the right to choose what accommodations, supports, services and help they need. What the wealthy grandparents of an autistic child deem worked for him must not therefore be mandated for all of us. Autism families and autistic adults who don't agree with the way Autism Speaks approaches autism should not be simply subjected to their dictated national policy. No organization has the right to remove my son's right to be heard and mandate whether  and how my son is included in his school and his community.  I will not let Autism Speaks silence my son as he grows up. I will not allow Autism Speaks to usurp my voice as a parent and mandate what it thinks my son needs. Autism Speaks does not have that right.

Autism Speaks has no right to perpetuate policies that leave my son at the mercy of strangers in isolation from his own community, chemically lobotomized because their organization is uncomfortable with his apparent differences and degree of impairment. I look different from people who are white. My nose is wider. I will not narrow it. My skin is darker. I will not lighten it. I am visibly different from Mrs. Suzanne Wright. Should she then speak for what I need because she is in a position to bestow large quantities of money on those who make decisions? I thought this was the United States of America. I can speak for myself and adults with my son's degree of impairment can speak for him, until he can clearly communicate his needs himself. Only someone who knows what road my son will travel as an adult can know what he needs. Sorry that is not someone who is not autistic.

I will stand with Lydia Brown and disability and human rights activists in defiance of the mega nonprofit Autism Speaks.  For those of you who say Autism Speaks has good intentions, I respond that the road to a hellish future for my son and too many of his peers is being paved with their good intentions. We are at the crossroads of a very dangerous turn in the road of nonprofit public policy lobbying. Will this organization dictate the lives of your children? Is the future that you see for your grown son or daughter? A future of poverty and dependence on people paid to care for them after you are gone? Look further. We have the technology to vastly improve the quality of life for my son and his peers. Isn't it sad that the push for assistive technology development for wounded warriors is encouraged but that drive does not exist for our community? We must take a breath, step away from sadness and ask each day how our children will live as independent adults. 

The goal is autonomy. I want the whole American Dream for my son. I want lifetime educational access so he can continue learning until he reaches his highest potential. I want supported employment beyond him pushing a shopping cart. I want him to live on his own in clean, safe, housing beyond poverty. I want him to be an active part of his community. No revamped institutional residential housing is going to be accepted by me for my son. I have seen segregation. That didn't really work out for us people of color at all. We decided that was enough of that. How is that supposed to be ok for my disabled son?

I will be a mouse who roars. Even if I cannot be there in person, I want to be there in spirit, and so today I roar for Lydia Brown, and all those who will stand with her. A friend has a blog with a title that describes the unstoppable force headed Autism Speaks' way tomorrow.  The title is "Small But Kind of Mighty".

Lend your voices to ours, online and in person. Roar for your progeny. Demand more.

Here is my thank you to every brave soul who stands and speaks for my son. In solidarity.

Nothing About My Son Without HIm.