Why Autism Speaks is bad: it actually hurts Asperger’s / autistic people

The short version: Autism Speaks sucks.  It advocates (ineffective) “therapies” that do actual harm to autistic people and it promotes a 21st-century reincarnation of eugenics.  If you think Hitler was a bad guy, and you embrace tolerance, diversity, and unity, and abhor racism, bigotry, and discrimination, then please, please do not support Autism Speaks in any way.

The long version (I’m issuing a potential Trigger Alert: Sensitive Material)…

This “charity organization”, as you probably know, was founded by Bob and Suzanne Wright, grandparents of an autistic child (who later grew up to become an autistic adult, as autistic children tend to do).

I won’t delve much into their “I Am Autism” campaigns (link to YouTube video of commercial, with subtitles; here is a link to the written transcript on ASAN’s website) or the general fear-mongering that they’ve generated, because that’s been covered pretty well in many other blogs already; instead, I’ll focus on the tidbits that I found on my own.  Here’s what you may–or may not–know.

A quick investigation of Bob Wright himself yields the following information:

  • In college/university, he had originally majored in pre-med, but later changed his focus to psychology, with a minor in history.  (The popular phrase “those who don’t learn history are doomed to repeat it” was obviously lost on this guy…or maybe it wasn’t….)
  • He worked with General Electric (GE) as a staff lawyer.  (Wait…wasn’t GE founded by Thomas Edison, the same guy who essentially screwed over former-employee-turned-competitor (and armchair-assumed Aspergian Nikola Tesla?  Not that that means anything–it doesn’t–but the irony is interesting.)
  • He became CEO of NBC Broadcasting when GE took them over.  (So if you want to make a documentary, movie, or commercial about autism that promotes acceptance and dignity, don’t approach NBC with it.)
  • He launched Autism $peaks in 2005, as its chairman.  Immediately, A$ merged with Autism Coalition for Research and Education, followed by National Alliance for Autism Research in 2006 and Cure Autism Now in 2007.  (Sounds rosy, eh?)
  • During its first nine years, the “advocacy” group donated a half-billion dollars toward scientific research.  (Makes me wonder just exactly who they’re “advocating” for!  It certainly isn’t actually-autistic people.)  And as if that wasn’t enough, they also strong-armed the United States federal government into spending “billions” on autism research; apparently, as of 2014, the total was $3 billion USD, supposedly for “research and ‘monitoring'”.  (Monitoring?  I’m starting to wonder if there’s a registry or catalog somewhere…I’m also starting to wonder if I should strengthen my resolve to seek official diagnosis from someone outside of the US…)
  • On Wright’s watch, A$ teamed shook hands with Google on a project that would sequence a database of autism genomes.  (So there is a registry after all….)
  • He resigned his chair position last year, but as of the beginning of this year, he’s still heavily involved as a member of its executive committee.
  • As of this year, he sits on several boards besides A$; these include Polo Ralph Lauren, AMC Networks (god, I hate them anyway), and several others.  He’s also a life trustee of NY-Presbyterian Hospital (oh isn’t that lovely?  Putting a eugenics advocate in charge of a medical facility…)

The above points are all factual (link to well-sourced Wiki article) and all comments in parentheses are simply my opinions.

Now let’s head on over to A$ itself…I dug and found (mostly from the well-sourced Wiki link mentioned above):

(Don’t worry; if I link to any material from the A$ website, it’ll be through the archived website via the Wayback Machine, not to the A$ website itself. 🙂 )

  • A$’s research funding has been directed toward four primary areas: etiology (looking for genetic and environmental “causative” factors), biology (looking at cells, tissues, organs, and systems, and their functions), diagnosis (including lab-testable biomarkers, and epidemiology, or the occurrence, prevalence, and distribution), and “therapies” (including medication, behavioral therapy, and therapies for ailments they think are “unrelated” to autism, such as sleep disorders)
  • They fund the Autism Genetic Resource Exchange (AGRE), which is a “DNA repository and family registry” of both genotypes (what your genes are) and phenotypes (how those genes express themselves), and this repository is available to autism researchers worldwide.  (Yep, there’s yet another database.  And this one includes the rest of the family, too…)
  • They support something called the Clinical Trials Network, which is primarily focused on pharmaceutical (medication/drug) treatment of people “with” autism.  (So….if Johnny/Janie can’t assimilate or stop flapping his/her hands, we’ll just shove pills down their throats…)
  • The goal of the whole Google project is to use 23andMe genome testing to create the “largest database of sequenced genome information of autism”, hosted on Google’s cloud-based genome database (Google Genomics).  The name of the project itself?  Mssng, pronounded “missing”.  (Oh my, how heart-warming…)
  • The WHO (World “Health” Organization) has adopted some of A$’s approaches.  (More than a little frightening, for those of us on the spectrum; nobody in the world would be free of A$’s influence…)
  • As mentioned above, A$ swallowed the National Alliance for Autism Research (NAAR), whose board was made up entirely of neurotypical people: a small group of parents that included a lawyer, a chemistry professor, and two psychiatrists.  (Yep, let’s drug ’em some more…and be intimately familiar with any possible loopholes in the applicable laws while doing so…)
  • NAAR’s stated goals were to support research that investigated causes, treatments, and cures for autism.  They also headed up an initiative known as the  “High-Risk Baby Sibling Autism Project” and its own genomic NAAR Genome Project.  (Yep, cures for autism, and yet more, more, more on those genetics…  The eugenics truth is taking shape…)
  • The group A$ swallowed in 2007, the Cure Autism Now (CAN), was founded by the father of an autistic son who actually wrote a book called “Strange Son”; excerpts from this book are in themselves worth their own Potential Trigger Alert: “There is a small group of people in this world to whom an event so devastating has occurred that they may have even stopped believing in God” and “maybe, just maybe, you could bring someone back from the dead.”  This was in reference to an autistic teenaged boy who did not speak, but wrote his own autobiography of poetry.  (Oh my goodness, is ableism ever in its full glory…)
  • CAN, like NAAR, included a bunch of parents, doctors, and scientists devoted to the prevention, treatment, and cure of autism.  (There.  They said it: PREVENTION.  The eugenic agenda is official, in case there was ever any doubt.)
  • A$ signed on to the (Bill) Clinton Global Initiative with other executives and philanthropists, with the goal of “dealing with” the “autism ‘crisis'”.  (So…just how much would we be able to trust Hilliary, if she were elected?  How do we know she’s not pandering to us now, saying sweet words (talk is cheap), only to stamp us out later?  The truth is, no one knows.  But this tidbit, however tiny, doesn’t look all that encouraging.)
  • A$ has, since at least the first archival scanning of its website, advocated ABA, or Applied Behavioral Analysis.  This has been highly criticized by those who have been subjected to it (link to Amy Sequenzia’s article).  A quick look at the ABA description estimates the need for between 25 and 40 hours of therapy per week with an ABA professional.  I’m sure those professionals don’t work for free, so when the “I Am Autism” ad claimed that “Your money will fall into my hands, and I will bankrupt you for my own self-gain”, they probably weren’t lying, at least to the parents they had snowed–or were trying to snow–into seeking ABA for their children.  (Or….could they possibly be referring to themselves?  They seem pretty hell-bent on grabbing donations; might the “bankrupt you for my own self-gain” part actually be a subliminal suggestion?  Just wondering…)
  • A$ has invited the Judge Rotenberg Center to be part of its (2013!) resource fair (link to article on AutisticHoya, which contains a scanned PDF of the brochure); chances are pretty fat that A$ also referred people to the JRC for electro-shock “treatment”, that has been described as a torturous “aversion”-like therapy, that came under public scrutiny in 2012, resulting in documents being filed with the FDA in 2014.  Of course, A$ is now apparently (finally, as of Sept 2016, in an A$ website “news” headline so new that I was the one who submitted it for archiving) backtracking on this stance (linked through the Wayback Machine archival site), and “supporting the FDA’s proposed ban” (which leads me to wonder exactly how toothy that FDA ban proposal is, because don’t believe for a second that A$ has done that much of an about-face on electro-shock therapy in just three years).
  • And of course, the lack of actual autistic people serving on A$’s board has been given heavy criticism.

So far, we have:

  • Exclusion of actually autistic people (at least, up until recently, and even then, it’s kind of a “whitewashed” version)
  • Alliances with providers of harmful, painful “treatments”
  • Forced behavior modification and personality stifling
  • Fear-mongering
  • Strong eugenics undertones (or maybe not so “under”; they’re pretty overt)
  • …And little actual assistance (by comparison) to real autistic individuals and their families

Way to go, A$.  “Thank you”…for SUCKING.

As bleak as it may look, we, the people on the spectrum, are not completely helpless; here’s what we CAN do…

  • Boycott companies that support A$.  Yes, this includes NBC and AMC TV networks.  Yes, this includes Home Depot.  A more comprehensive list of corporations and their contact information can be found here (link to BoycottAutismSpeaks).
  • Raise true awareness; “come out” to as many people as you feel comfortable with, and don’t be afraid to talk about it with those people.  They probably are/would be interested!
  • If you haven’t already, start a blog.  It’s free, quick, and easy, and you don’t even have to be a great writer.  You’re not necessarily looking for Pulitzer Prize here; you’re trying to spread the word.  Write about the truths about A$ and the Asperger’s/autism spectrum in general.  Try to highlight the “good” along with the “bad”.  We could also try to use the words “autism” and “speaks” in our posts, so that as people search for it, they’ll probably come up with some of our links in their search results, too.
  • If you live in the US, be cautious and tread carefully if seeking an “official” diagnosis; you never know what “registry” or database you may wind up in.  This is true for other parts of the world, too, but especially the US.
  • If you do get your genome analyzed by 23andMe (or any other of those ancestry/genomic services!), use an alias (fake name) and a different birthdate and address (pick someone you trust).  DO NOT use your real name or birthdate.  Certainly don’t provide any other uniquely-identifying information.  DON’T fill out any questionnaires (even if health-/ancestry-related and even if they seem benign/harmless).

The problems are large, our own funding is out-numbered, and the available solutions are slim.  But again, we’re not completely powerless.

After all, remember…at the “alarming” rate (for autism) of 1 in 68 (or 1 in 42 or whatever numbers they want to spout this week), there are more of Us, the Spectrum People, than there are of Them.

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8 Comments

  1. When I was first diagnosed one of the first things I discovered was the saying “Autism Speaks, but it doesn’t speak for us”, so I avoided it like the plague. Then when I read that John Elder Robison walked away from them too it confirmed what others had already been saying.
    On the subject of haplotyping, yes I did mine but a long time ago and that was way before autism was even mooted with me. I live in the UK and I did it as part of a project when I did my second M.Sc. so I don’t think I need worry on that score.

    Liked by 2 people

  2. The only reason that I, myself, don’t put a dollar-sign into the name of “Autism Speaks” is that money’s too good for them. When they don’t deserve my money, they don’t deserve its symbol.

    Liked by 1 person

    1. Heck yeah! You raise an awesome point!! 👏🏼👏🏼👏🏼. Totally agree 😊❤️

      Like

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