Friday, February 27, 2015

Kudzu, #AutismSpeaks10, & The Autism Wars

When my son was 2 years old, something pervasive, noxious, and invasive entered his life and ours. No, I don't mean autism. I mean Autism Speaks. Autism Speaks, is quite literally the kudzu of the autism and autistic communities.

Clemson University researchers are nearly lost
in the overwhelming cover of kudzu vines,
which have spread over every surface,
object and tree in the area. (Credit: Clemson University News)
First I should explain what I mean by kudzu, for those who may not know. Here's a quick primer. Quoting The Weather Network's article,  kudzu is the
"Plant scourge of the South adding more carbon dioxide to the atmosphere, aiding in its own spread"
"It quickly covers the ground, buildings, and anything else around, blanketing fields and even climbing up trees. Any plants unfortunate enough to be overgrown (including trees) are deprived of sunlight by the dense cover of kudzu leaves and they quickly die out. These vines now cover over 3 million hectares of land throughout the U.S., mostly in the southeastern states - Georgia, Alabama and Mississippi - but it has spread south into Florida, west to Texas and north as far as Ontario. "

"While these growths have taken on epic proportions, that's not the only problem from kudzu. It's already been shown that kudzu causes more nitric oxide (which is also a byproduct of burning fossil fuels) to be released from soils, which has caused an increase in ground-level ozone levels during summertime heat. In addition, as the plants continue to spread northward, especially with climate change, they are actually increasing the amount of carbon dioxide released from the soil into the atmosphere, introducing a feedback loop. "

"According to Malcolm Campbell, a professor and the vice-principal of research at the University of
Kudzu seed pods credit Wikimedia Commons
Toronto, in his piece in The Conversation, the research of Nishanth Tharayil and Mioko Tamura, from Clemson University, shows that the plants choked out by the kudzu tend to lock more carbon into the soil."

"The study, published in New Phytologist, showed that despite a 22 per cent increase in soil litter (due to the abundant leaves the kudzu drops during winter), there was a 28 per cent decrease in soil carbon after a kudzu infestation invades an area."

"According to a Clemson University press release, Tharayil said: "Our findings highlight the capacity of invasive plants to effect climate change by destabilizing the carbon pool in soil and shows that invasive plants can have profound influence on our understanding to manage land in a way that mitigates carbon emissions.""

Flowering kudzu credit Wikimedia
We watched in stunned helplessness as Autism Speaks, like kudzu, invasively entered our lives and propagated gigantic, noxious campaigns that spread vapors of ablest humiliation, hopelessness, and resentment sprinkled with the occasional seasoning of inspiration pornography around the world. Their misguided doomsday scenario of fundraising by fear of an autism epidemic oppresses supporters to relieve that sense of helplessness by raising money to aid it in spreading its depressive rhetoric. Local autism nonprofits directly helping autistic adults, children, and families saw funds being choked off as Autism Speaks launched massive media campaigns to generate new fundraising revenue streams of tens of thousands of dollars towards odd research efforts (read about why Alison Singer resigned from Autism Speaks here) each year.

As kudzu spread north, killing every native plant in its path, Autism Speaks expanded into legislative efforts and advocacy, with all the finesse of a bull in a china shop, upending or appropriating efforts by informed legislative activists and organizations not in lock step with them while trying to mandate its own singular, damaging agenda.  Autism Speaks spoke about autistics while choking out their voices. It claimed it spoke in the name of all autism parents while demanding all parents accept their idea of what autism does to families and what autism policy should be. It has spent recent years trying to obliterate any other advocating voice for autism by such misadventures as:

  • attempting to come to Washington D.C. and mandate their singular biased opinion of a national autism policy all the while ignoring disabled disability rights activists and all other autism and disability nonprofits. (This effort continues.); 
  •  targeted releasing of another apocalyptic "autism the epidemic" PSA (Sounding the Alarm) and massively pitching and screening it privately, along with sprinkles of funding, to various schools of public health and health care facilities in order to add professional legitimacy to their private autism agenda; 
  • that disturbing genome database campaign in collaboration with Google  named and hashtagged "MSSNG" meaning "missing", implying their view that a puzzle piece is missing from our children's brains and bringing to mind disturbing and dangerous eugenic practices of the past that began with attempts to prove that any divergent population was less than another genetically
  •  going as far as traveling to self promote and attempt to control the autism conversation in Catholic countries by marketing their organization to the Vatican complete with founding member Suzanne Wright's unfortunate statement that families look upon their autistic loved ones as St. Francis looked upon someone with Hansen's disease. 

When autistic activists, who remember their lives as neurodivergent children in a world of refrigerator mom treatments, Lovaas punishments as therapy, shock treatments, institutionalization and unspeakable harm, raise their voices in protest, Autism Speaks unleashes their supporters to bully and insult these justifiably angry advocates. It is a sad spectacle to witness.

Parents attacking autistic adults is in a very real sense akin to those parents attacking adult versions of their own autistic children.  Their inability to see that in their frenzied passion to attack (in the name of a mega nonprofit that uses legal power and corporate might to defend itself with impunity) they are damning the only people who know firsthand what the futures of their own children will hold and are fighting like hell to insure better futures for autistic children is sadder still. Would they want some stranger to attack their children as viciously as they are attacking autistic adults under the cover of social media? It is heartbreaking to see this degree of hostility and compartmentalization in Autism Speaks supporters. Aren't we all also parents? Aren't we supposed to have maturity and control our online behavior? Melting down on social media over a hashtag trouncing is not the solution to what is happening. Asking why #AutismSpeaks10 is viewed with such enmity by adults who are truly like our children because they share their neurology might be a better place to start.

Mu, autistic, out and about representing Charm City
On Purple day. Purple has become the only shade of
blue we endorse. Please note the absence of the puzzle
piece. ©Kerima Çevik
Our family never recovered from the shock of seeing Autism Speaks' "Autism Every Day" PSA, which is still branded with their logo and available for viewing on YouTube. We never viewed our son in this manner and it upset us greatly to have autism parents presented in this way. Having learned our lesson about the depressive effect that Autism Speaks can have on us, we now set a blistering schedule well ahead of time for the month of April to avoid the media bombardment of Jerry Lewis telethon style content that leaves us dispirited every Autism month. Shopping for school supplies, groceries, and a host of other things is a challenge during the month of April. Kudzu, I mean Autism Speaks, and their pervasive puzzle piece logo, meant to represent a piece missing from our children's brains? Or the unsolvable "mystery" of autism, or something? is in our faces. Tenth anniversary celebrations will only make their annual month long assault worse.

Autism Speaks came into our lives like kudzu, destroying and divisive to those it presents itself as being in the service of. The good news is kudzu is edible. And if the right species are planted to counter it, things like soy, peanuts, and peas, those plants will give back to the soil and allow native plant life to grow back.
kudzu starch cake,katori-city, Japan ©Katorisi Wikimedia
So how can we fight the kudzu spreading in autismland?

By continuing to insist that Autism Speaks stop inciting panic and hopelessness to control the autism conversation and raise money. It is WRONG. Speaking out even if they use their massive media control to counter. Continue to inform people about what Autism Speaks does and why it is wrong.

Continue to insist Autism Speaks include autistic representation. Autism Speaks needs meaningful autistic decision making representation. This means either a collaborative working partnership on equal terms with autistic run organizations that have equal representation in deciding autism policy and  issues that have a lifetime impact on autistic children and adults, equal representation on the board of directors, or both. The composition of its board makes Autism Speaks appear to speak for wealthy, cisgender, white, parents, grandparents and professionals who have autistic loved ones.

Don't allow Autism Speaks to continue efforts to mandate national Autism Policy as they see fit while excluding all other stakeholders: Autism Speaks must stop insisting on forcibly attempting to promote their own agenda by mandating autism policy alone. Autism policy, whether they like it or not, must be inclusive of all stakeholders including autistic voices and the voices of other organizations who represent autistic people and their families and care providers. This is not a corporate takeover. This is a cause and human lives are in the balance.

Reclaim Autism Month: Autism month should not be the personal fund raising self gratifying palooza of Autism Speaks. It should be a time when the full scope of what autism is, as well as how autistic people have always been part and parcel of our society should be on display. It should be a month for understanding, educating, and beyond awareness, it should be a time for demonstrations of acceptance, positivity and hope.

So please Autism Speaks, do not obliterate other voices with the ritual explosion of 10th anniversary chest pounding. We get it. You've leveraged a fundraising model that worked for Susan Komen for years. You're flush with funding and more is never enough. That doesn't give you the right to smash the voices of those you claim to speak for and torture them with loud, sensory overloading, displays of power that are dangerous to autistics. Tenth anniversary or not, for the safety of the autistics you claim to serve, tone down the over the top antics a bit this year.

My wish for #AutismSpeaks10 is that Autism Speaks makes a conscious decision to cease being the kudzu of the autism community and act to reinvent themselves into what they should be, a nonprofit that has true autistic representation and allows autistic voices, including those criticizing them, to speak their minds without being the victims of personal verbal attacks and abusive rhetoric by overzealous supporters. We could suspend reality for just a moment more and pretend that Autism Speaks lived with us in the United States and understood that autistic people and families who aren't Autism Speaks members, volunteers or supporters, like all other stakeholders, had the constitutional right to speak their minds about policies and practices that directly impact their futures.

Further, we could push this make believe scenario and consider that if all autism organizations looked for points of policy everyone agreed on, worked on a summit that united these points into an autism policy plan acceptable to everyone, then everyone would successfully advocate for said joint autism policy and the acrimonious nature of the autism wars might pause for a cease fire.

Wars tend to end with cease fires.



  1. Beautifully said, and what a brilliant metaphor for Autism $peaks!

  2. Commie$ won't stay out in the freezing cold like they're supposed to! We need to cut this "Civil Rights" delusion and strike FEAR like neurodivergents know how to do...