Thoughts and illustrations on living with Asperger's Syndrome.

Sunday, November 17, 2013

The Autism Speaks "Truth Be Told" Fund Drive

This past week was a public relations nightmare for Autism Speaks, and autistic self-advocates made it happen. The largest autism charity came to Washington for a "policy summit," to speak for autistic people, with no intention of actually including us in the discussion. As well, co-founder Suzanne Wright's call to action continued an unfortunate trend of fear mongering and demonizing autism, igniting a firestorm among a great number of us on the spectrum. And so, Autism Speaks' arrival in Washington was met with an on-site protest, the resignation of autistic board member John Elder Robison, and an online flash mob of rebuttals to Wright's statement (scroll down). Autism Speaks was shouted down by those it professes to serve, as we exposed the disconnect between the charity's offensive messaging and our reality.

An organization the size of Autism Speaks depends on its fundraising and influence to continue its work, and one can only wonder how the backlash will affect their ability to garner financial support. Actually, I feel a little bad about that. What happens to their "national plan for autism" if the dollars dry up? Without our generous donations, Autism Speaks might be forced to live moment-to-moment. In anticipation of the donors' next move. In despair. In fear of the future.

So I thought I would help out Autism Speaks with a little fund drive for their benefit. I'm hoping you will all take part. And as a bonus, these wonderful gifts can be yours in exchange for your donation:

The Refrigerator Raider - $50-$99
  • You'll receive a brand new refrigerator for your child to strip off their clothes and raid -- which is a favorite pastime of autistic children, according to Autism Speaks. Your fridge features a reinforced surface optimized for nude climbing, and an adjustable thermostat so you can feel the cool breeze against your naughty bits. Guaranteed to provide a screamin' good time, well past Junior's bedtime!
The Homewrecker - $100-$199
  • A coffee mug that reads “World’s Best Marriage-Destroyer.” Because who broke up your parents' marriage? That’s right, YOU did, little Susie! High five! Your autism was such a burden, it split your family apart, just like Autism Speaks warned you. Autism knows where you live... and so does this fabulous mug! So drink a toast to your destructive power, in style!
The Thelma & Louise - $200-$499
  • We'll send you on a thrilling car ride off the George Washington Bridge. Guaranteed to be preferable to a lifetime of raising a child with autism, as noted by Alison Singer in the Autism Speaks film Autism Every Day. Makes an especially wonderful gift for the child with a special interest in bridges, as you can give him an up-close look at its structure on the way down! Buckle up, autism is a bumpy ride, but this is ridiculous!
The Take It on the Chin – $500-$999
  • Suzanne Wright will personally grab your autistic child’s chin to teach her eye contact! Because Autism Speaks knows that social courtesy trumps personal boundaries. At Suzanne's school of etiquette, your child will learn her place, and how to respect authority, especially high society. No longer will her autism stand in the way of proper manners, conduct, and character. Moms, this is guaranteed to be chin music to your ears!
The Crisis Responder – $1,000-$1,999
  • The National Guard will arrive at your home! Is your little one a tragedy, or a burden? Fear not, our nation's finest are at your service to combat the enemy that is autism. Autism Speaks will prepare a national plan of attack all about YOU, and don't worry about reviewing and signing off on the plan - in fact, they don't even WANT your input. Crisis? Did somebody say autism crisis? Not in your home!
The Peter Pan - $2,000-$4,999
  • We'll whisk you away to Neverland. Because Autism Speaks knows autistic children never grow up and become adults. As for where they go when they get older, well, nobody really knows... LA LA LA LA LAAAA WON'T SOMEONE THINK OF THE BABIES! Three million children may have been kidnapped by autism, but you'll live happily ever after in a fantasy world.
The High-Voltage Vacation - $5,000 and up
  • Reserved for our most generous donors, our premium thank-you gift. You and your family will receive a weekend getaway at the fabulous Judge Rotenberg Center. Experience Autism Speaks' idea of therapy at this esteemed service provider, including electric shock treatment. Live like the JRC patients do, and watch your unwanted behaviors (and your cares) simply melt away. The JRC has been recognized by none other than the United Nations for its brutal and torturous practices. Aw, c'mon, a little juice won’t kill you. Unless it does. It actually might.
This is Autism Speaks, and truth be told, this is what your donation buys: ignorance, negativity, and sensationalism. And, let's not forget that only 4 cents of every dollar raised goes toward helping people with autism and their families. Isn't transparency great? So make your donation today, and join generous Autism Speaks supporters, such as:

Private foundations
  • Far and away, the largest donors to Autism Speaks (over $1 million each), including the Marcus Foundation, the Allerton Foundation, the Mel Karmazin Foundation, the Gordon and Llura Gund Foundation, the Higgins Family Foundation.
  • Many of the companies you know, like Toys ‘R’ Us, the New York Stock Exchange, Newman’s Own, the National Football League, NASCAR, and Major League Baseball.
  • Numerous celebrities support Autism Speaks, including Sumner Redstone, Jerry Seinfeld, Tommy Hilfiger, Conan O’Brien, Stephen Colbert, Ricky Gervais, Sarah Silverman, Tina Fey, and more.
Say, what are the chances these donors are aware what their charitable dollars truly support? Imagine if they knew? Imagine if they pledged to withhold future support until Autism Speaks does the right thing, and speaks for autistic people instead of dehumanizing us. Imagine if these major donors instead supported other worthy charities which will put their dollars to much better use, such as the Autistic Self Advocacy Network, GRASP, or other organizations listed here. Perhaps if a flash mob made the suggestion through their social media, I dunno, just sayin.'

Money talks, and Autism Speaks is doing an awful lot of talking with its donors' money. Donors, it's time to listen... listen to what they're actually speaking about, and then listen to autistic people speak. Then decide where your charitable dollars, and your voice, can do the most good.

Sunday, November 10, 2013

Life Cycle of a Routine

1.    Chugging along, the Happy Idiot.

2.    Disruptive threat to the routine emerges.

3.    Dismissal of the threat as beyond the realm of the possible.


4.    Anger at realizing the threat is in fact real.


5.    Despair and befuddlement over how to deal.

6.    Tinker with or blow up the old routine, often under time pressure.

7.    Surprise.

8.    New routine, the Happy Idiot redux.

9.    Repeat.