Thoughts and illustrations on living on the autism spectrum.

Sunday, December 22, 2013

Crum Lynne

I’m riding the regional rail into Center City this early morning, thinking it might be nice to have an adventure.

They punch my ticket three times. I reach to take it back, but come up empty as they clip it to my seat instead.

On public transit, you have to let go of your control. This car pitches and sways and does what it wants, as do its occupants.

We trace a path through a landscape of refineries, industrial decay, the seedy underbelly, so to speak. Crum Lynne, Prospect Park, Glenolden. Various locales defined more by the railroad stop itself than any other feature.

We hover just long enough at each station, moving again before newcomers find their seats. My seatmate knits, I gaze out the window.

At my destination I disembark, and emerge into the busy hub. Not knowing which way is up, I must take time to orient myself.

And then out into the city. I crunch across icy walkways, dodging droplets of water beneath the overhang.

You can lose your way just wandering the near-deserted streets.You have to go down to go up, and the long way around to get back where you started. And where you’d like there to be stairs, there aren’t. Everything here is foreign to me. An intense world. A kind of uncomfortable that won’t fade with time or familiarity.

I don’t linger for long, retreating inside to a table and wi-fi, and the aroma of the delicatessen. How free can you be when your ride home rides on the clock?

The train home is “Late 2,” reads the timetable, but a few moments later it’s “On Time.” I climb to the platform and wait for it to arrive.

We retrace the morning’s stops in reverse, silence punctuated by noontime snoring, until we reach the end of the line. Home, I can feel the relief of my control returning.

I’m grateful for this expedition, knowing it will be easier next time, but knowing further that I’m not eager for a next time. I wanted adventure; I found more of a disruption. The search must continue another day, down a different track.

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.

Thursday, October 31, 2013

Real Monsters of Autism

November 1 is the 4th Annual Autistics Speaking Day, and the word is beware. Beware! For here be monsters. On Halloween we celebrate imaginary monsters, but monsters are all too real in the world of autism. So too are the dangers they bring. If you want to speak up for autistic people, then speak out against these monsters.

(Inspired by Toby Allen’s Real Monsters.)
The Curebie Quacksalver
The Curebie insists autism can be cured, and his bag of tricks is full of deadly potions he’s willing to try on innocent test subjects. Treatments like bleach, or chelation. He cares not for any ill effects of his remedies, so convinced is he that the patient can “recover.” The idea of autism acceptance, he dismisses as laziness. The Curebie’s dogged persistence is rooted in his deep-seated hatred of autism.

The Denier Diablo
The Denier is learned in the dark arts, able to raise from the dead theories that have been scientifically banished, most notably a link between vaccines and autism. With one head perpetually buried in the sand, he ignores reality while cherry-picking statistics to support his outlandish claims. His other head wears a gas mask to guard against environmental toxins. The Denier is prone to tirades about the “truth” behind what causes autism. His arguments against vaccination risk reanimating the most lethal of all zombies, preventable disease, like measles.

The Celebrity Spellbinder
The Celebrity is the Big Cheese, the High Muckamuck, the Top Banana. But it’s her ideas about autism that are truly bananas. This behemoth personality uses her fame as a platform for pseudoscience, legitimizing what would otherwise be a fringe movement. She is known to distort or overgeneralize information, smearing the name of autistic people, falsely linking them to evils such as pedophilia. The Celebrity has blood on her hands from her ever-mounting body count of deaths and preventable illnesses suffered by her followers.

The Surrogate Silencer
The Surrogate fancies himself a spokesperson for the disabled, though not disabled himself. With his oversize megaphone, he readily raises his shrill voice over others, his loud volume justified (in his mind) by his advanced degree or job title. Not satisfied to drown out autistic voices, he would even silence them, through rules like “quiet hands.” The Surrogate is a skilled ghost-writer, churning out policies and fundraising appeals without representation from those he purports to serve! This specter’s menace is his denial of equal rights, like educational opportunities, or organ transplants, based on disability. He makes it about you, without you.

The Poison-Tongued Phantasm
The Poison-Tongue espouses vile, bigoted attitudes about autism, which she liberally dishes from behind the safety of her masked face. She harasses autistic people and their families with threatening letters slipped under doors, asking that they “do the right thing” and move, or put their child away somewhere permanent. The Poison-Tongue leaves in her wake the use of slurs like the R-word, poor grammar, and liberal use of exclamation points. She may hide her face, but never her forked tongue.

The Cold-Blooded Caregiver
The Caregiver who murders her autistic child has decided it is better to be dead than disabled. She believes herself an “angel of mercy” who is saving her child from suffering, when she has lost faith in supportive services and her own ability to cope. Many times, if only a true angel had intervened, her challenges and fears might have been properly addressed, before she acted out of desperation. Other times, she is purely selfish, focusing on her own stress instead of her child’s needs, even to the point of winning public sympathy for herself, with the life lost seen only as a footnote. What could be more monstrous?

Incredibly, all these real monsters of autism claim they are actually doing good. As long as these misconceptions persist, autistic people face real danger. This Autistics Speaking Day, let’s keep it real, and call a monster a monster.