Pepper Shakedown

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Hard-Ass:P

It’s nice to believe that we all fit in somewhere, but do you think it’s really true?
Some of us find fitting in's not so easy, no, it’s not so easy to do.

Always being the odd one out, the misfit wherever you go,
Try as you may to find where you fit, seems it might never be so.
Have you been broken, have you been bent, crushed, or pounded to make yourself fit?
Have you been rotated, overturned, relocated? But still excluded. Sounds familiar, don’t it?

If you’re autistic, you’ve gotta work extra hard, for the same rights as everyone else.
When you’re faced with a problem, no one else will deal with it, so you’ve gotta handle it yourself.
Self-advocacy’s not for the faint of heart, it might be the hardest thing you’ll ever do.
But if you lie down and take it, your needs will be trampled, self-advocacy starts with you.

You’ve got to be a hard-ass.
A hard-ass:P.
You got to show them that you should be heard, and accepted. It’s the only way to be free.
Might mean you feel like the bad guy,
But it’s well past time to be the nice guy.
Your own troubles matter, above and beyond, don’t worry ‘bout how they’ll react.
Your own wants and needs matter, know this and remember, and you’ll find the courage to act.
It’s not enough to have the right.
You still have to fight the fight.
And be a hard-ass.
A hard-ass:P.

Self-advocacy takes everything that you’ve got, takes you out of your comfort zone.
It’s gonna take spoons, when you’re all out of spoons, got to dig deep, find strength of your own.
When you’re feeling your most attacked and most battered, you can simmer, and seethe, and slow burn.
Or say enough is enough. They wanna play rough? Show you’re not to be messed with. They’ll learn.

Say you want peace and quiet, when loud noise surrounds you?  Well guess what? You got to get louder.
Got to get their attention, stand up for your sensory needs, it’s all in your power.
Say you’re given directions, that weren’t so clear? It means that you’ve got to be clearer.
Explain you’re confused, and which part, and why – you’ll find understanding is nearer.
And if you wanna fidget, and they tell you sit still, don’t let them interfere with your motion.
Keep right on rockin’, cause it don’t hurt nobody. Rock their world with a tolerant notion.
And if they want you to speak, when you want to write, you have the right to insist.
Same words, different medium, so choose your own. When you make sense, who can resist?
You got the right to exist. As you are.
That’s how to be a hard-ass.
Be a hard-ass:P.

You might think that it would fine with most people, if you were to just disappear.
"They’d be okay with me out of the way. What they don’t understand, they fear."
But you do have a place, the same rights as the rest, and the only way in is to shove.
And you’ll find that you fit, without breaking or bending, when you stand your ground and get tough.
You might get your way or maybe you won’t, but you won’t find out ‘less you attempt.
And you may find you matter, you may find respect, much more than you ever had dreamt.
And you’ll tell ‘em, “Damn right, I’m a hard-ass.
“Autistic and proud, you see.
“I’m a bad-ass, and you know it. Dude.
“I’m a hard-ass:P.”

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.

Corporations

• 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.

Individuals

• 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.

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.

Autistic People Should Do the Harlem Shake

Baauer - Harlem Shake .mp3

Found at bee mp3 search engine

Autistic People Should... Blog
Beat the Autocomplete: A ranking of the factors influencing Google autocomplete

Diagnostic & Statistical Merriment

 

Vigil for George

George Hodgins, autistic man allegedly shot and killed by his mother - thAutcast
March 30, 2012: Nationwide Day of Mourning for Disabled People Murdered by Family and Caregivers - ASAN
Video: San Francisco Vigil for Murder of George Hodgins – CBS

Chasing Typical

Today is the 2nd Annual Autistics Speaking Day, a day for those of us on the spectrum to make our voices heard, to raise awareness, and to self-advocate through blogs and social media. If you’re a first-time reader, welcome. I encourage you to read as many points of view as possible today. Then, if you wish, join me in turning your support into action, by making a charitable donation to an autism organization of your choice, such as ASAN.

This is a day for autistic pride. We have so many reasons to be proud. Yet it remains difficult to be as proud as we should. Because for all the awareness we raise, we still feel like aliens on this planet. We do not fit in. It is hard to be proud, when many of us carry with us a sense of shame. If you are a neurotypical (NT), I would like you to understand where this shame comes from. Because every day, however unintentionally or implicitly, you expect us to behave as neurotypicals do. This is an expectation we cannot meet.

I have been told, throughout my life, I have so much potential. I could do so much more. If only I would learn to be more outgoing. I heard it as a child, before anyone knew I was autistic. I still hear it as an adult, from people who know I am an Aspie.

In school, I was an A student. I had “outstanding” math ability, “far exceeded my peers” in grammar, and was “a prepared and excellent test-taker.” In art class, my teacher said of my talent, “Such expressions of beauty and acute perception reveal a mind and soul of rare sensitivity.”

I was a good student. Good, but not good enough.

I would not take part in class discussions, they said, because I “found the contradiction or assent of others too risky.”

I had made “a decision to not communicate orally,” which “stifled my development.”

I was “unmotivated” to discuss class material, “refused to get involved,” and “had no debating skills other than with pen in hand.”

I was disruptive, disrespectful, and a discipline problem.

Consider the effect of such criticism on a middle school age child who was also a victim of bullying by his peers. It was for my own good, they said. These flaws would hold me back in life, and what a shame that would be.

“I can’t do what you ask,” I told them.

“Not can’t,” they said. “Won’t.”

They were so sure. Scornful, even. As if my choice was obvious. As if I was sitting on a treasure chest full of potential, and chose not to unlock it to see what was inside.

No one had heard of Asperger’s back then. But I suspected that I was different. There had to be some reason I could not do these things others found so basic. It would be some 20 years before autism gave it a name.

But at the time, I could not help but develop a sense of self-doubt. A sense I would never be good enough. A sense of shame.

As an adult, learning about the autism spectrum lessened this burden somewhat, but not completely. Our world is an NT world. It will always be an NT yardstick we are measured by. Our world values smiles, phone conversations, small talk, and fitting in with the group. It values extroverts.

As an adult, I continue to receive constructive criticism, well-intentioned, to help me reach my potential. I’m not enough of a leader. I’m not assertive enough. Not engaging or friendly enough. It still hits like a punch in the gut.

I can explain now, that I am autistic, and I may not meet these expectations. I am glad to say people are more understanding, when they know. It still bothers me though, to fall short. It hurts to have to say, “I’m sorry, I can’t do what you ask.” Not because I am defiant, or think I am special, or know better than you, or am not trying. I am differently abled, though I may not look it. “Different, not less,” is still a long way from being reality.

I’m reminded in indirect ways, too, that I fall short of the NT ideal. I’m reminded, every time your conversation swirls around me, and I’m not a part. I’m reminded, when you can’t read my mood by my expression. I’m reminded, in your moment of surprise that I didn’t anticipate what you were thinking. I look like you, but I do the unexpected. I can confuse you, and I feel guilty for that.

I also must allow for the possibility that in fact, I can, and should, be working to improve my social weaknesses. Everyone is capable of self-improvement. I don’t believe being an Aspie should give me a "free pass" against anything I find too hard. Could I be a leader if I tried? Could I have better phone skills? I don’t know. I’m not sure where the line is between “can’t” and “won’t.”

On this Autistics Speaking Day, my hope is that by sharing my point of view, NT’s may understand why I will not always meet your expectations. As one of my readers recently put it, “Too many people are not aware of how far out of our ‘skin’ we go to do things sometimes. Some of them don't realize how it is to push yourself on things that come easy for them.”

It will always be an NT world. Despite the progress we have made in autism awareness and education, I still feel that I am “chasing typical,” looking for something more that will “complete” me. Is there more of my potential inside that locked chest? Or is there nothing but an empty box? Maybe all that potential is already here, outside the box. Maybe I am squandering what I already do best, in chasing after something more that might be inside.

My hope is that a day will come when I no longer have to compare myself to the NT ideal. When I can stop chasing after what I can’t do, and start going full speed ahead at what I can do well. When I am truly free to be different, not less.

To read more posts from participants in Autistics Speaking Day, please visit the AS Day blog or Facebook page.