A Noteworthy Rift in the Autism Advocacy Communities

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John Elder Robison, an autism advocate, publicly resigned yesterday from the research advocacy group, Autism Speaks.  You can read his open letter here, and I want to use it as an opportunity to draw attention to an important distinction not many necessarily know of.  Many people look at autism as a “disease” to be “cured.”  They tend to be the parents,  extended family members and caregivers of children who have an autism diagnosis.  I get that.  Why?

In early 1989 I became just such a parent when my son, Kris, was diagnosed as “severely and profoundly developmentally delayed,” with “autistic like tendencies” (he also had an infantile spasms diagnosis, which is a relatively rare form of epilepsy).  My (now) ex and I were advised by a pediatric neurologist at Denver Children’s Hospital to “have more children.”  I am not making that up.  He went on to explain that Kris would likely live to be an adult, but that trying to care for him ourselves would eventually bankrupt the family and it was really just a question of time before we made him a ward of the state and he was placed in a group home.  Yeah, that is a “conversation” you do not expect to have (rather gob-smacked, I don’t believe either of us had much of a response).  As it turns out, Kris died from a head injury he sustained in the kitchen of our home on 7 November 1993.  And while we had a taste of the challenges the good doctor had forecast, we also had experiences that gave us cause for hope that Kris could live a semi-independent life as an adult, perhaps such as those presently lived by Larry Bissonette or Tracy Thresher, whose lives are depicted in the documentary Wretches and Jabberers (US$ 3.99 on amazon.com).

Autism Speaks has issued a national call to action, in which it describes children with an autism diagnosis as, literally, missing: as if they had been taken and are no longer present. My son, Kris, is missing.  Death took him.  Autism did not.  For me to accept that analogy is tantamount to denying the value of his life, the joy and love (and, yes, frustration and pain) I experienced sharing my life with my son.  It is tantamount to denying him his humanity. The point of view expressed in the call to action, then, is not terribly different from the one that informed our pediatric neurologist in 1989.  To understate it, that shite ain’t cool.

While many have an “autism is a disease we must defeat” approach, there are lots of adults, like Larry and Tracy, and lots more like myself, who are living and functioning outside of group homes as autistics.  John Robison is one such person, and as he explains:

I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches.  It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

This is how the folks behind International Autism Acceptance Decade put it: 

International Autism Acceptance Decade, 2010-2020, is an effort by autistic people to move the conversation about autism from awareness to acceptance.

In other words, autism is not like cancer, multiple sclerosis, typhoid or any other myriad of diseases for which words like “epidemic” and “eradication” are appropriate.  This is from John Robison‘s  resignation letter:

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people.  We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic.  We are not problems for our parents or society, or genes to be eliminated. We are people.

He continues:

Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults.  And the fact is, that is the majority of the autistic population.  I’ve made that point in the past; apparently to no avail.  I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.

In closing, let me note that I do not write this post lightly.  Portia Iversen, who co-founded Cure Autism Now (which has merged with Autism Speaks) brought her son, Dov, to Kris’ Camp not long ago, and has been a wonderful source of counsel and support to me ex and the others with whom she works at Kris’ Camp.  I have never met, or had conversation with, Portia, and thus have no clue what is her view on this issue.  But I am saddened to see the language in the national call and understand why Robison, whose views match my own, has concluded that he advocacy for the acceptance position working within Autism Speaks has failed.  It is a shame.


About Will H. Moore

I am a political science professor who also contributes to Political Violence @ a Glance and sometimes to Mobilizing Ideas . Twitter: @WilHMoo
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1 Response to A Noteworthy Rift in the Autism Advocacy Communities

  1. Sheogorath says:

    See below my take on Suzanne Wright’s blogpost, which you can also find at Aspergernauts. Enjoy!

    An Autistic Speaks to the Community – A Call for Action.
    This week is the week America will fully wake up to the Autism $peaks crisis.
    If six million people in America one day went missing – what would we as a country do?
    If six million people in America one morning were wiped from existence – what would we as a country do?
    We would grieve. We would blame terrorists. We would declare war on the guilty party and innocent countries. Finally, we would mourn the loss of so many opportunities for national advancement.
    We’d leave no stone unturned.
    Yet we’ve for the most part lost touch with six million American people, and as a community, we’ve done nothing.
    We’ve let people be silenced, disenfranchised, and murdered.
    No more. Today is the time to rise up and take our futures back from those who claim we have none. It is time to work together in a concerted effort to shut down the organisation that claims to want to help Autistic people speak even as it works to silence us. It is time to shut down Autism $peaks.
    Don’t we and our families deserve it? America has always been about its great people.
    Yet we seem to be forgotten in the debate about a genocidal ‘cure’ – even though we have often led others into the future.
    Each day across this country, six million moms, dads, and others who live with Autistic people wake to the sound of Junior stacking cans, Jack playing video games, or Mom typing her latest bestseller, and they smile. Do you get that, Autism $peaks? People smile knowing that their loved ones are happy doing what they do best.
    These families are living better lives than you envisage for them.
    Autism $peaks says that these people are only existing and dare not call their time their own, but they are not the hopeless, helpless victims of their loved ones’ neurology that the organisation so clearly wants them to be.
    This is Autism.
    Life is lived in the moment, enjoyed to the full, and people’s worlds are not a series of never ending meltdowns.
    This is Autism.
    Parents and guardians smile at their child’s joy in discovering communication through PECS, AAC, sign, and speech. They laugh to share their child’s pleasure as they dance with a long ribbon, the Autistic person intently watching it as it streams around them. They marvel at the astonishing imagination of their child as they draw complex fantasy worlds entirely from their heads.
    This is Autism.
    On the bad days, all the family members out there – 420 million around the world – feed into the lies of Autism $peaks because their loved one is melting down after reading about a parent, often female, who has been encouraged to murder their child by an Autism $peaks PSA. On the good days, of which there are so many, they feel the joy and contentment that is their right, and are able to ignore the poison spewed onto YouTube and other places by Autism $peaks.
    This is Autism.
    If any of this sounds familiar, you know Autism $peaks. And if you know Autism $peaks, you know we are looking at a monumental population and information crisis. And we have no international plan.
    What I described above is really just the beginning. In the next ten years, up to a million Autistic Americans will lose their lives at the hands of those they are supposed to be able to trust, and those who kill them will be met with sympathy and face no charges as if we are not also human beings. Up to ten million Americans face the misapplication of ABA in their own homes and places like the Judge Rotenberg Center.
    But what about sympathy for the human beings who died just because they had a different neurology? Why no jail time for those who choose to kill rather than giving their child to people who actually care? Why no condemnation for the organisation that actively encourages these murders by calling us ‘burdens’ and ‘financial nightmares’? And why is the torture of vulnerable people ignored and condoned when the waterboarding of suspected terrorists was rightly vilified in the international press?
    There is no plan to build a city for six million people so we can be guaranteed our safety.
    So let’s dial back a minute and consider the people being diagnosed as Autistic every day in this great country. Do we have a plan for them? Are they all being treated with dignity and compassion? Are we doing anything to guarantee they get a fair shot at a safe and secure future?
    We know that children from minority and lower income families are not getting diagnosed as early as they could be, so their castigation begins later, which might increase their chance of a hopeful and successful life.
    How about in school? Why should there be a national curriculum which underserves those who struggle with language? Why are we encouraging teachers around the country to share lesson plans and methods that work only with people of certain neurologies? Could it be because of Autism $peaks’ corruption?
    But – there is no international plan.
    And – our futures depend on it.
    According to Autism $peaks, it costs $2.3 million dollars to care for one Autistic person for their lifetime, and they say it will be well over $137 billion dollars for all of us.
    But that is because that is all we are to them; not people with varying levels of ability, only costs to be considered. They are very careful never to say what the real cost is to someone who raises money for them in the faint hope of receiving help for their child, help that is unlikely to be beneficial even if it is given. They also do not state the fact that most of the real cost of $1.4 million dollars to support an Autistic person throughout their life is down to the fact that no one wants to give us a job because of the prevailing belief that Autistic people are always severely affected, meaning people who are nonverbal, people with intellectual disability, and people with a host of co-occurring conditions, thanks to Autism $peaks PSAs that portray people with CDD as Autistic.
    What is our plan?
    We can’t even craft one – without collaboration.
    Close your eyes and think about an America where six million Americans and counting are told they cannot take care of themselves without help, even when they can. Imagine six million of our own – unable to dress or eat independently, unable to use the toilet on their own, unable to cross the street, unable to judge danger or the temperature for themselves, unable to pick up the phone and call a friend because their parents and guardians have been brainwashed into believing that they will never achieve these goals when all that is required is the right support at the right time, just like for non-Autistic people.
    This is an international emergency. We need an international action plan – NOW.
    I am posting this as a call for action on an international plan – NOW. I am asking the Autistic Community to respond to the threat of Autism $peaks with all the urgency it deserves – NOW.
    Autism $peaks – here we come – because we have an equal right to life – NOW.
    Suzanne Wright and her husband Bob co-founded Autism $peaks in 2005, and they have been ripping off their donors ever since by massively underproviding the services they were set up to deliver.
    Copyright © 2014 Romersa’s Protégé. Individuals and groups are free to copy and share this work for all purposes except large scale distribution, subject to credit being given and any derivatives being released under the same or a similar licence. All other rights reserved.
    Adapted without permission from an Autism Speaks blogpost under an exception for the purposes of criticism and review enshrined in the CDPA 1988.

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