2023 Update

This is a personal blog started in 2011. It is no longer active, updated, or maintained. Unfortunately, it appears that I've also irreparably broken some of the links by accident.

21 January 2012

Having Loud Hands

Unlike a good, large number of people in the autism community, I had never heard the phrase "quiet hands" until fairly recently, when I read this article by Julia Bascom, which so eloquently describes the abusive side of Applied Behavioral Analysis—commonly touted as the most common "evidence-based" intervention or therapy for autism. I almost cried.
"When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed."
— Julia Bascom
Quiet hands. It means to be still and proper. It means to stop flapping or squeezing or flicking or rubbing. It means, in translation, "Stop looking so damn Autistic already!"

It is a quick, easy way to silence Autistic people. Especially Autistic people who don't talk, for whom behavior is unquestionably communication.

Having quiet hands means giving in to systemic ableism and letting external standards of "normality" and "acceptability" dictate one's behavior at all times. Having quiet hands means hiding being Autistic and suppressing natural ways of speaking and moving. Having quiet hands means shutting up and putting up and giving up.

I don't want to have quiet hands. Ever.

And that's why I'm writing about the Loud Hands Project. Loud Hands are the opposite of quiet hands. Loud hands means to be Autistic and proud. Loud hands means to move and speak and act as comes naturally. Loud hands means to eschew externally defined ideas of "normality" and "acceptability." Loud hands means to be comfortable in being Autistic.

It means moving beyond "There's something wrong with you."

The Loud Hands project, spearheaded by Julia Bascom of the "Quiet Hands" piece and sponsored by the Autistic Self Advocacy Network, is a transmedia project that seeks to give a broader platform to the diversity of voices, both literal and metaphorical, of Autistic people throughout the community. The initial $10,000 necessary to fund the publication of an anthology of essays by Autistic people was reached in an amazing nineteen days (just under three weeks), but there's plenty more to come.

Julia has described the next three benchmarks for future funds:

Benchmark 1: $15,000 “About us, without us”
“About us, without us” is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism. If we make the $15,000 benchmark, we’ll be able to pay for Julia to go on the road and collect interviews and footage, and cover production, editing, and initial distribution costs.

Benchmark 2: $20,000 “Welcome to the Autistic community”
- With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012—Autism Acceptance Day.
- Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.
- Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.

Benchmark 3: $25,000: Connecting to Community Together
To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.

This is why the Loud Hands Project is important. So that the next generation of Autistic people will have a precedent for having loud hands and embracing themselves as complete human beings with value and dignity as Autistic people. So that there will be no more "There's something wrong with you." So that little by little, we can strike down the bricks that have institutionalized ableism across our society, in our schools, in our policies, in our everyday interactions.

Coming only days in the wake of Martin Luther King, Jr. Day, it is imperative to remember that the fight for civil rights is not over. Autistic people are routinely disenfranchised, discriminated against, and subjected to "quiet hands." Our voices are constantly de-legitimized with all manner of straw-man and no-true-Scotsman fallacies not merely online but at conferences and in IEP meetings and in policymaking. Our rights are routinely ignored.

Loud hands are necessary. In the wake of enormous volumes of disinformation and misinformation about autism and who we are as Autistic people, in the deluge of vitriol and cacophony displacing any notions of community, we need to have loud hands to assert both the discrete individuality of Autistic people and the group cohesiveness that comes with Autistic culture.

And this is why I am supporting the Loud Hands project -- to empower Autistic people to be leaders now and to provide a role model for the next generation of Autistic people. They could be your children. Let's work toward a world in which your children will face less discrimination and stigma. Let's work toward a world in which your children can have pride in being who they are, and can find stellar examples of activism, advocacy, philanthropy, and self-fulfillment in today's generation of Autistic adults and youth.

That's what money to the Loud Hands project will do. It will make these projects possible, and expand the platforms that currently exist for Autistic people to express themselves and seize the mantle in our own advocacy. The Loud Hands project will be accepting donations for the next two months -- through 15 March 2012, and can be made here, which is also where you can watch the project's introductory video! (And yes, I made a donation -- better to put that money toward this phenomenal project than toward food not from the campus dining hall.)

Another way you can contribute? The upcoming anthology is looking for Autistic people to contribute essays. (Guidelines here.) And yes, I will be earnestly writing a submission. (It might even be good.)

14 January 2012

Life Not Worth Living

Trigger warning: Extensive discussion of ableism and eugenics, mention of forced sexual assault, repeated quotes of the r-word, and extended direct quote of narrative of an extremely triggering situation. Also some nasty comments.


An accessible audio recording of this post:

Update 15 Jan. 2012: You can sign both petitions here and here, thanks to Sunday Stilwell and Katy Ahern. I've provided email addresses of the transplant team and administration, so all signatures will send an email to all of the targets.

Life Not Worth Living

Shame on the Children's Hospital of Philadelphia. A crying shame.

Just four days ago, on 10 January 2012, a young girl with Wolf-Hirschhorn Syndrome, a rare genetic disorder, was taken to CHOP for a nephrology appointment.

I can't describe what happened. I can only give it to you straight from Amelia's parents.

I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”

The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.

I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”


I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.

“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?

The social worker is writing some things down. Not sure what. She casually gets up to take a call. My eyes follow her to the phone and I see Joe’s face. His mouth is open, his face is pale and he is staring straight ahead of him at the white board.

Rage fills the room. I point in his little, brown pudgy face. “Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP.”

I see the social worker quickly writing down what I just said. Joe hasn’t moved. Amelia is still asleep.

The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”

I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”

She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”

In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”

The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”


“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”

I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”

“And then who do I see?”

“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

You can read the rest at "Brick Walls."

So this doctor thinks he can play God. Decide on a whim who will live and who will die, who deserves to live and who does not. Isn't that exactly what Adolf Hitler did? Following the widely successful idea of eugenics, Hitler adopted it to whole populations. People with disabilities? Little people? People with mental illnesses? People with intellectual disability? Gay, bisexual, or transgendered people? Jewish or Romani people? Serbs or Poles? Untermenschen. The best translation I can produce for that German word is "sub-humans." Not quite worthy to be called human.

It starts with this. The assertion that because Amelia has intellectual disability, hers is life not worth living. That statement cannot be isolated and confined to this one incident, this one doctor, this one point in time. It has tremendous ramifications for all of us, quite possibly for anyone who regularly reads this blog.

I once read speculation1 that Hans Asperger's seminal paper had been couched in Nazi-style terminology in order to escape deep scrutiny, and that Asperger wanted desperately to save the children at his clinic from being subjected to the eugenic policies of the Nazi Party. Because people with developmental delays, people with developmental disabilities, people like me would have been among the first to go to the death camps.

Autistic people fall under the broad umbrella of people with developmental, intellectual, or cognitive disabilities. We are as diverse in our disabilities and differences as we are in our personalities, but this we share with Amelia. We share the stigma, prejudice, and bigotry to which people like us are routinely subjected. We are collectively victims of deeply institutionalized ableism -- the idea that certain groups of people are superior or inferior to other groups of people on the basis of ability or disability.

How can any doctor who has taken the Hippocratic oath not-to-harm insist that because Amelia has intellectual disability, hers is a life not worth living? Doctors are sworn to protect and preserve all life. It does not matter if the person rushed into the emergency room is a serial rapist and murderer of small girls and babies, or if the person in the intensive care unit was one of the murderers under the Khmer Rouge or in the Srebenica massacre, or if the person needing surgery were Ayman al-Zawahiri, Al Qaeda's new number one. Under the Hippocratic oath, there is no room for judgment or assessment.

No life is more valuable than another.

Doctors swear this.
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow. I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God. I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure. I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm. If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Their oath is to serve all human beings. Not some human beings. Not righteous or morally upright human beings. Not non-disabled human beings. Not typical human beings. All human beings.

What this doctor said can be translated thus -- Amelia is not a human being. She is sub-human. Untermensch.

But who is he to judge her quality of life? How can anyone look at any person with a developmental or intellectual disability and judge the quality of that person's life? Only that person can do that. We too have the capacity to live happy, meaningful, and fulfilling lives. We too have the right to determine our needs and desires as far as we possibly can. We too have the capacity to love and to be loved, to feel empathy and to receive empathy. We have loving families, like Amelia's loving parents. We have the capacity to form friendships. We have the capacity to make meaningful contributions to society, even if those contributions are comparatively small or not particularly newsworthy.

What is our quality of life, for we disabled people, we people with developmental or intellectual disabilities? We define it.

The moment people like this CHOP doctor state that people like us are ineligible to undergo a life-saving procedure because our quality of life is not good enough, we have lost. We have lost.

Because that is playing God. Who are you to determine whose life is worth living? Amelia's life is worth living. My life is worth living.

Your eugenic theory of ability-superiority can go to hell.

1 I believe this may have been in Adam Feinstein's A History of Autism, but I do not have a reference offhand.

11 January 2012


Trigger warning: This is mostly about ableism and a response to other, very triggering things, as well as including lots of direct quotes of ableist stuff.

An accessible audio recording:


I'm tired of being misrepresented. I'm tired of seeing the principles of self-advocacy misrepresented. And I'm tired of seeing the autism rights movement misrepresented.

Let me be clear. I'm not talking about allies, or about people who were just thrust into Autismland and don't yet know much, if anything, about the constant conflicts that erupt here. This isn't about you.

This is about people who write things like John Elder Robison's "Looking forward at the autism spectrum," or Mark L. Olson's "Autism's Fly-Over Population," or the comments on Susan Senator's "The Parents Vs. The Autistics." It's been a week of frustrating, misleading, and outright hurtful writing.

And I'm tired.

I'm also a little bit furious and a little bit frustrated and desperate to write something. My hands are numb right now, and it has nothing to do with my feelings. It's kind of cold in here, actually.

Some background. John Elder Robison, as most people know, is famous because of his memoirs, Look Me In the Eye: My Life with Asperger's. So he is Autistic, though you'll almost never hear him use that word to describe himself, as he prefers the supercilious Aspergian. More recently, he wrote a book called Be Different: Adventures of a Free-Range Aspergian. Fairly recently, I think around 2009 or perhaps 2010, Robison accepted an appointment to the scientific advisory board of Autism Speaks, an organization notorious for its lack of meaningful representation of Autistic people in leadership positions as well as its harmful and ableist rhetoric. I personally cannot comprehend why any Autistic person in his or her right mind, fully informed, would want to work with or for Autism Speaks, but there you go.

And Susan Senator is the non-Autistic mother of adult Autistic son Nat, as well as the author of Making Peace with Autism, The Autism Mom's Survival Guide, and Dirt (a novel.) I don't always agree with her, but she writes well and is genuinely interested in engaging and dialoguing with Autistic people as equals rather than interesting curiosities. Her most recent article, linked above, engendered a spat of disgusting, disturbing, and sometimes outright frightening comments, mostly from non-Autistic parents.

I think I've read enough disgusting, disturbing, and frightening things last week. I've been triggered pretty badly a few times. In fact, I'm slightly worried about opening the tabs next to this one in my browser, where I have those three pages open, just to get the quotes for this post. If you've read this blog before, you've probably caught a significant change in the tone and style of this post from previous ones. And it's because I'm sick and tired of stuff like this.

(I'm inserting a second trigger warning here: a long list of direct quotes of incredibly ableist and possible very triggering stuff.)

"High-functioning autistic and Aspergers self-advocates who put themselves on an island by arguing that only the disabled can and should decide about the disabled to the exclusion of parents, family, caregivers and outsiders need to accept that they are only advocates for themselves, not the entire disabled population."
-Mark L. Olson, LTO Ventures and parent

All self-advocates are not "high-functioning autistic and Aspergers" as Olson so arrogantly generalizes. The assumption that Autistic people who do things like blog or use speech must therefore automatically be "high-functioning" is fallacious at best and actually harmful at worst. I know firsthand of not a few Autistic people who cannot consistently perform activities of daily living such as cooking, cleaning, keeping a schedule, traveling, or maintaining hygiene without assistance from a family member, friend, or aide. Yet some of those same people often face ridiculous assertions that because they must be so high-functioning or "just Asperger's," their advocacy clearly is illegitimate and unfounded.

Other self-advocates might never be called things like "high-functioning" were you to meet them in person. Amy Sequenzia, of Rockledge, Florida, an Autistic self-advocate who regularly meets with government officials and expresses her opinions rather eloquently in the media and elsewhere, does not speak and travels everywhere with an aide. She communicates by typing via alternative and augmentative communication. (By the way, Amy prefers to refer to herself as"autistic" rather than "person with autism." That too is not something that only "high-functioning people with Asperger's" do.)

And Sequenzia is not alone.

Self-advocates Larry Bissonnette and Tracy Thresher are both non-speaking Autistic adults who communicate via AAC. In childhood, they were presumed mentally retarded and ineducable. They were in segregated classrooms and never mainstreamed or integrated with students without disabilities. Bissonnette and Thresher starred in the 2011 documentary Wretches and Jabberers, which follows their advocacy. Both men have served on the Board of the Autism National Committee, an organization that includes both non-Autistic and Autistic people in the fight for civil rights, and whose constituency has traditionally been non-speaking Autistic people (or Autistic people with limited speech) and their families.

They too are not alone in fighting for Autistic rights. Sequenzia, Bissonnette, and Thresher are only three of innumerable non-speaking Autistic people who are self-advocates. The majority of non-speaking Autistics face even more discrimination than do those who have learned to use speech, and by no means are they excluded from the model of self-advocacy, self determination, and autism rights. Olson's assumption that all self-advocates are "high-functioning autistic or Aspergers" is grossly inaccurate and egregiously hurtful.

Non-Autistic parent Todd Drezner, in his 2011 documentary Loving Lampposts: Living Autistic, further explains why the use of the disputed "low-functioning vs. high-functioning" dichotomy is invalid and not useful when discussing Autistic people, and especially when dismissing so-called "high-functioning autistic self-advocates." In one segment of the documentary, Drezner interviews an elderly non-Autistic mother to an adult Autistic man in his 60s. "Lyndon is employed and lives by himself in his own apartment," says Drezner. "Is he high-functioning? His speech is severely limited and he needs support to perform life's daily tasks. Is he low-functioning? And would it make any difference at all in Lyndon's life if you could answer these questions?"

And what about people like Dora Raymaker? A board member of the Autistic Self Advocacy Network (ASAN) and Co-Director of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), Raymaker does speak but prefers to communicate by text-to-voice. When she speaks, her words are not always articulate, as you can hear in Loving Lampposts: Living Autistic, and could lead the uninformed -- or people like Olson -- to make the assumption that she is "mentally retarded." Clearly, that is not the case.

Olson's second mistake is his blanket assumption that the principles of self advocacy seek to exclude "parents, family, caregivers and outsiders." That is not true. Self advocacy seeks to ensure that Autistic voices are always heard and prominently so in any conversation about autism, along with the voices of parents, family, caregivers, and outsiders. Autistic adults welcome non-Autistic allies. People like Todd Drezner, Susan Senator, Kristina Chew, Kim Wombles, and Amy Caraballo are living proof of that. (And again, these names are only a very representative few of the innumerable allies, many of them non-Autistic parents of Autistic children, and some of children who might be described as "low-functioning" or "severely autistic" -- insert a collective gasp of "WHAT REALLY THEY'RE NOT PARENTS OF ASPIES?" here.)

The principles of self advocacy are not that only disabled people can speak for disabled people, but that they must be involved with any advocacy. "Nothing about us without us" has been a motto of disability rights for a long time. There is nothing in that statement that suggests that non-disabled people have no right to be part of advocacy. What is at stake is that the most important stakeholders -- the people for whom the advocacy is occurring -- are routinely excluded, marginalized, and treated with the kind of contempt that Olson displays.

We, as Autistic people, whether we have been called "high-functioning" or "low-functioning" or both (at different times in our lives), have the right not only to advocate for ourselves individually, but for the rights and needs of Autistic people at large.

What I want to know, really want to know, is what parent in his or her right mind, would not want his or her child to advocate for him or herself? And what parent would not be proud of his or her child advocating for other Autistic people? When a non-Autistic sibling of an Autistic child starts an advocacy or awareness initiative, parents everywhere applaud. Why do you react with horror when Autistic youth and adults want to make the world a better place for your children? That's what involving Autistic people meaningfully in advocacy means. We're not in it for ourselves. We're in it to work toward a world where all Autistic people, children and adults, speaking and non-speaking, can live better, happier lives.

Why would you oppose that?

"The image of autism is going to get lots of attention as more children with autism age into adulthood. Those who don’t see autism as a disability are talking about HF or Asperger’s. The DSMV slated for 2013 will officially expand the spectrum to include Asperger’s and my fear is that 'Aspies' will become the face of autism. It’s much less disturbing to talk about autism and include who seems, outwardly at least, like the boy next door. It’s easier to believe that autism has always been around when we’re talking about someone with amazing abilities or high levels of intelligence combined with some quirky behaviors. My friends with severely affected children have tremendous fears about the future. They clearly don’t need their children further marginalized by those who advocate just for awareness and acceptance."
- Anne McElroy Dachel, Age of Autism

"When self-advocates’ autism talk shifts primarily to rights and entitlement, the need for new therapies, treatments, and services is forgotten. When we focus on entitlement, we create the impression that our problems can be solved by legislative action, much like the civil rights laws did in the sixties."
- John Elder Robison, Autistic author and parent of an Autistic son

Here comes another grandiose misconception. Autistic self-advocates, with some exceptions, are not people who "don't see autism as a disability." If you don't believe me, read closely the following sentences:

1.) I am Autistic.
2.) I am a self-advocate.
3.) I believe autism is a disability.

If you didn't catch that, please scroll up a little and read that again.

I do believe that disability is entirely defined by society, but because of our society and our history, yes, being Autistic means that I am disabled. All Autistic people are disabled. Some Autistic people might be more disabled than other Autistic people, but if you are Autistic, you are automatically disabled.

The people to whom McElroy Dachel appears to be referring probably belong to an "autistic supremacy" or "Aspie supremacy" kind of ideology, the kind of people who believe that being Autistic means they are better, more evolutionarily advanced, or more morally upright than non-Autistic people.

Most self-advocates aren't supremacists. We're not advocating for "Autistic supremacy." We just want equal rights. And yes, rights means services. It means accommodations. It means therapies. It means appropriate education. It means employment opportunities. It means housing opportunities. Rights isn't a vague euphemism for "we don't need help of any kind."

It's a bold, revolutionary statement demanding that the right of all Autistic people to equal access and opportunity as non-Autistic people be honored. And how is that right honored? At least partially, through appropriate services and accommodations, ad nauseaum. We have the right to receive services and accommodations without which we could not have equal access and opportunity. Some Autistic people would benefit from more services or accommodations, and others would benefit from very few.

Advocating for rights is not merely advocating for "awareness and acceptance." McElroy Dachel misses the point entirely. We want all Autistic people -- including non-speaking Autistic people, including Autistic people with self-injurious behaviors, including Autistic people with destructive or violent behaviors, including Autistic people who need an aide 24/7, including Autistic people who cannot complete higher education, including Autistic people who cannot travel on their own, including Autistic people who have not yet learned to communicate with non-Autistic people -- to have better lives. And that very often means better services and accommodations.

McElroy Dachel is wrong. And so is Robison.

"Could it be that on the autistic-side-of-the-dichotomy, they are not able to see/perceive/understand/know well-enough outside of their own specific-ability-disability to accept the parental-dimension of autism?"
- Barbara, self-identified as not a parent
This one just blows my mind. I can't win.

No matter what I say, it can't be me; it must be "just my autism talking," as Autistic writer Melanie Yergeau puts it.

So firstly, everything that I say or write is suddenly de-legitimized because (insert sarcasm here) obviously, an Autistic person is unable to understand someone else's perspective or that someone else might have different challenges or needs. Absolutely and unequivocally wrong. At least one study (I believe there were more, but without citations, [and I'm too tired to find them now] I don't want to list anything else) has demonstrated that Autistic people not only experience empathy, but in certain cases, experience more empathy on average than non-Autistic people.

And empathy has a lot to do with perspective-taking, doesn't it? I'm a writer of fiction as well as of this blog. (Currently working on my fifth and sixth novels simultaneously, in fact.) I of all people should know right away that the answer is yes. For one, in my writing, I seek to humanize all of the characters -- and I write crime novels that often focus on religious-inspired terrorism. (Disclaimer: I do not support or condone any form of terrorism for any reason. It's sad, but after the NDAA, that has to be there.) I want the readers to be able to empathize with the characters. ...and people like Barbara seem to think quite horrifically that people like me are incapable of perspective-taking and empathy.

It's sickening and dehumanizing in the worst sense. For my part, I think Barbara is the one lacking empathy here. Sorely lacking, at that. The irony never fails to astound me.

Secondly, her statement is so patently untrue. There are Autistic people who are also parents of Autistic children, such as Melody Latimer or Paula Durbin-Westby or Phil Schwarz (Autism National Committee). So obviously, Autistic people can understand and even appreciate from personal experience, "the parental-dimension of autism." By the way, all three people listed (who again, are only three people out of innumerable possible names) also happen to be self-advocates.

Thirdly, we Autistic people are more keenly aware of the diversity of disability in our own community than anyone else. How it could be otherwise? And as I've noted repeatedly in this rant of an essay, advocating for rights for Autistic people isn't just advocating for the rights of some Autistic people or of the so-called "high-functioning autistic or Aspergers" people. (Where are those people, by the way? I'm beginning to think they're almost mythical. At the very least, as Todd Drezner [again, a non-Autistic parent of an Autistic child] observed, it can not only be difficult if not impossible to define what makes someone high vs. low functioning, but also not particularly helpful in helping an individual person.)

"I think the dividing line in the autism community is ultimately if a person can achieve those goals of independence. At some point when a child is in 'transition' the parents (finally) have to acknowledge that their child will or will not meet the criteria for adult social service support (medicaid, SSI, and services). At that point, the life paths will differ between those that are 'high functioning' and those that need government supports."
- Marjorie Madfis, parent
Again, it's not so clear-cut. Kathryn Bjørnstad, one of the co-creators of Autistics Speaking Day, cannot travel independently. Kassiane Sibley, a highly articulate Autistic advocate, cannot cook and clean consistently for herself. Other Autistic advocates have noted that they do not live independently and or receive any number of government support or services. Most of the same people are blanketly labeled "high-functioning" in a frightening attempt to de-legitimize their voices.

If you blog, then you're obviously high-functioning and very fortunate. Therefore, you obviously have no place advocating for people who are far more disabled than you are.

That's how the assumptions go. And they're just that. Assumptions.

Blogging does not equal independent living. Writing does not equal using speech offline. Advocating does not equal being "high-functioning autistic or Aspergers." A large number of people who get called "high functioning" actually need government supports. And a large number of those people are unable to get the supports and services they need.

"Yes, I am upset that my daughter would rather play Pixie Hollow on her computer for hours rather than visit with a friend or interact on Facebook. And I do think this behavior will impede her from being able to lead an independent life. That is why I try to intervene – even though she does not like it."
- Marjorie Madfis, parent
What if she's happier playing Pixie Hollow? What if playing Pixie Hollow is a self-calming coping mechanism for anxiety, sensory overload, or social overstimulation? What if she, like a non-Autistic student in my computer science course this semester, simply sees no use for Facebook? What if she doesn't have friends who value her for who she is as an Autistic person?

Did you ever think to ask those questions, Marjorie?

Most times, most of those "behaviors" are our way of coping with a world not meant for people like us. It seems another lesson in empathy could be used here.

"So, the argument from HFA’s that the problem is the expectations of society, that people learn to mesh into societal norms of manners, eye contact, and reciprocal language (body and verbal) seems just that……A tantrum over not having it their way……"
- Yvette Hansen, parent
Can't win. No matter what we say, anything that challenges the status quo must be attributed to some terrible expression of our autism -- in this case, throwing a tantrum. A tantrum. It's reading ableist comments like this that sorely tempt me to actually throw a tantrum. But I don't. I write these articles instead, hoping (maybe in vain) that people like the ones I've quoted will read them and alter their perceptions, bit by bit.

(I won't even bother addressing the HFA thing here. That horse has already been beaten to death in this piece.)

But all I see here is another profoundly disturbing attempt to de-legitimize the voice of any Autistic person who expresses his or her frustrations. And all those expressions are met with such hostility and condescending accusations as Hansen's, which inevitable evokes only more frustration.

It's hard enough living a world where it is expected that a treatment protocol or behavior plan or intervention for an Autistic child or adult is in place ultimately to eliminate "Autistic" behaviors and replace them with "typical" ones. To make the recipient of those types of therapy appear and act as non-Autistic as possible.

That's not saying that all services and therapies are bad; many are very good and sorely needed -- the kinds of services, supports, and therapies that teach coping skills, cater to emotional needs, address sensory problems, accommodate in a classroom, assist with employment, and provide strategies for coping in social situations with non-Autistics. But these practical considerations are not the goals of most therapies or services.

So when we grow up learning that to be normal and healthy is to not be Autistic, when we are told to suppress obviously Autistic behaviors like echolalia or stimming, when we are sent to social skills classes for the purpose of making us appear more "normal" rather than giving us tools to better interact with non-Autistics, it can get very frustrating indeed. Hansen's utter lack of empathy for the enormous difficulties and anxiety that Autistic people face -- and especially the very verbal Autistic people who often get called "high-functioning" -- because of the pressure to pass is telling.

It hints at the deep, systemic ableism that penetrates not just society at large, but also an unwittingly large number of the parents of Autistic people.

"At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten [from the New York Times article "Navigating Love and Autism"] who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living. They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as 'typical' Americans."
- Mark L. Olson, LTO Ventures and parent
Actually, the majority of so-called "high-functioning and Aspergers" Autistic people are often unable to access or receive the vast majority of supports and services. I don't understand why so many people automatically assume that the Autistic people who speak and or can go to college are also the beneficiaries of most supports and services. Because for those Autistics, the ones whose disability is far more invisible than visible, asking for any kind of support or services usually results in a metaphorically slammed door.

"You're asking? You? Well if you can ask, then you obviously don't need any help."

And whoever said that we wanted to live the exact same lives as non-Autistic people? Equal access and opportunity means exactly that -- access if desired and when desired, and opportunity if desired and when desired. Most Autistic people don't socialize the same way as non-Autistic people. Sometimes we have a different sense of humor. Sometimes we like to eat, work, and play in very different ways. So obviously, we're not advocating to live the exact same lives as non-Autistic people.

We simply want to be able to access a theme park. Or a movie theater. Or a church. Or the RMV. We simply want to have the opportunity to go to college. Or join a civic organization. Or vote. Or work in a field related to our skills and interests. Or live in an apartment or house where we feel safe and at home. And what's wrong with that? What parent wouldn't want barriers for their Autistic children eliminated? Olson's line of thinking seems twisted in incredulously ironic ways.

"Some disability self-advocates argue [that my daughter's] only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person."
- Mark L. Olson, LTO Ventures and parent
Um, no. The proposed Home and Community Based Services waivers under Medicaid, which you can read for yourself right here directly from the federal Government Printing Office, have no such stipulation about living such a distance from another disabled person.

They state that a home or community based setting
must be integrated in the community; must not be located in a building that is also a publicly orprivately operated facility that provides institutional treatment or custodial care; must not be located in a building on the grounds of, or immediately adjacent to, a public institution; or, must not be a housing complex designed expressly around an individual’s diagnosis or disability as determined by the Secretary [and] must not have qualities of an institution, as determined by the Secretary. Such qualities may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community.
The proposed regulations further state that
A setting that is integrated in the community is a setting that enables individuals with disabilities to interact with individuals without disabilities to the fullest extent possible. Further, we believe that such settings do not preclude individuals’ ability to access community activities at times, frequencies and with persons of their choosing. Such settings are not segregated based on disability, either physically or because of setting characteristics, from the larger community. In addition, such settings will afford individuals choice in their daily life activities, such as eating, bathing, sleeping, visiting and other typical daily activities.
These do not mean that a group home, a residential institution, or a closed campus setting could not receive government funding. Such settings will still be able to receive funding from any number of other sources.

What they do mean is that a home or community based placement is one where the person is not placed on the basis of being disabled, as in an institution or group home. A place that is not essentially a ghetto, segregated from the community, solely for disabled people. That's all. It says absolutely nothing about choosing to interact with, become friends with, or voluntarily choose to live with or on the same street as other disabled people. In fact, many of us Autistic adults like to be around each other. It gives us a sense of, you guessed it, community.

And as aforementioned, there are a large number of Autistic self-advocates who do in fact receive home-based services, including the services of part and full time aides to assist in activities of daily life. That can happen no matter where the person happens to live. So living in one's own apartment, a la Lyndon from Loving Lampposts: Living Autistic, is not mutually exclusive from receiving appropriate services and support.

"But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our 'fly-over' population. Their story deserves to be told too. They deserve the right to choose how they want to live."
- Mark L. Olson, LTO Ventures and parent
Suddenly we are the ones who resist progressive thinking and innovation? Quite the contrary. We are advocating for more inclusion, more integration, better access, and more opportunity. Equal rights. The right to self-determination. The right to receive appropriate supports and services. The right to live in a fully integrated community setting -- with non-disabled and disabled neighbors -- or to choose, of one's own accord, to live in a setting like a group home.

And there have been a number of initiatives, many of them by Autistic self-advocates, to create progressive, forward-thinking workarounds to challenges with regard to employment, higher education, and even aviation security procedures.

I think we have here a case of selective vision. Censored and redacted vision, perhaps even.

"As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves. By doing so, they are altering the public’s perception of what or who an autistic person is or may become. This reshaping of perception has moved the public’s concept of autism higher on the IQ range, with more and more people seeing 'autism' as a euphemism for 'eccentric geek,' or, 'genius,' which is [sic] most assuredly is not. Popular television shows like Parenthood and Big Bang Theory reinforce that trend. At the same time, the population of people with intellectual disability and severe autistic impairment remains fairly constant. Those individuals are not generally able to speak for themselves. They are most often out of the public eye, and they may rightly feel they are rendered nearly invisible by this change in perception."
- John Elder Robison, Autistic author and parent of an Autistic son
Maybe not to you. But in my experience, most people I've encountered picture a non-speaking child in a corner growing up to be an adult in an institution when I mention autism. Most people don't actually believe me when I tell them that I'm Autistic. (And I was diagnosed by a neuropsychologist who specializes in the autism spectrum and sat on the board of an autism organization.)

Furthermore, two studies, which you can read here and here, have shown that not only is the rate of intellectual disability in Autistic people far lower than it has been assumed to be for decades, but that intelligence (or IQ, more specifically) is regularly underestimated in all Autistic people, both those with the Asperger's label and those without it. So it seems that Robison is a bit behind in his facts.

In my experience, as an Autistic person with fairly invisible disability, I am not the face of autism. People do not look at me and assume that I am Autistic or associate my behaviors with being Autistic. When I disclose, I am frequently met with disbelief, dismissal, or denial. There has been very little change in perception of autism and what it means to be Autistic. And even less change toward the positive -- of viewing all Autistic people as neurologically different from non-Autistic people, not diseased or disordered, but genetically and phenotypically divergent. Sometimes in disabling ways. For many, in severely disabling ways. But being Autistic is not a negative or unfortunate or bad or defective or lesser or inferior way to be human. It's a different one.

"Every time a person with milder autism speaks of his own challenges, those words add to the body of information the public uses to define autism. The more we move that balance from disability toward eccentricity, the more we harm our cause, albeit unwittingly and with the best of intentions."
- John Elder Robison, Autistic author and parent of an Autistic son
Again. Whoever said that Autistic self-advocates, who again, are not homogeneously "high-functioning autistic or Aspergers," collectively deny that autism is a disability? Most of us are the first to recognize that being Autistic means being disabled.

And how can Robison not see how awfully offensive and insulting this statement is? So whenever a highly verbal Autistic person talks, he or she "harms" the cause. That's about as true as saying that whenever a white American woman convert to Islam who does not wear hijab speaks about issues facing Muslim women, she somehow unwittingly harms the cause of advancing civil rights for Muslim women. Is she any less Muslim than a Saudi woman who wears a face-covering niqab or a Pakistani woman from the tribal Pakhtunwala? She may not look stereotypically Muslim or behave (in this case by not covering) in stereotypically Muslim ways, but she is equally Muslim. Her voice is equally valid and equally important.

Autistic people who are not visibly disabled are still Autistic. Just because the average layperson would not immediately assume that I am Autistic does not mean that I therefore have no right to speak about my challenges or the challenges of other Autistic people. In fact, if I do not speak, if I stay silent, then the world will never know that Autistic people are as diverse in our being Autistic as Muslim women are in their being Muslim women. The more Autistic people who speak (literally or metaphorically), the more advanced our cause will be.

Whether it is Amy Sequenzia or me, not speaking is infinitely more harmful toward the autism rights movement than speaking.

"The autism spectrum still includes a large population – several hundred thousand in the US alone – who currently have no realistic hope of substantial employment. That is a tragedy. And it’s not because they are discriminated against. It’s because they are disabled. Not only that, they are disabled for reasons we don’t understand and in ways we don’t know how to fix."
- John Elder Robison, Autistic author and parent of an Autistic son
Actually, it is because they are discriminated against. Autistic people are routinely discriminated against because of their disability. Autism does not prevent a person from being able to work in a meaningful job using his or her skills and abilities. But discrimination does.

Any Autistic person, with appropriate supports, services, and accommodations, can work in a job using his or her skills and abilities. Some Autistic people can work in professions that might be considered impossible, such as in academia, the law, or medicine. Some might work in stereotypically geek professions, like in computer science or other technological fields. Others might work with animals, or in offices, or doing research in obscure but oddly specific fields. Autistic people can do just about anything non-Autistic people can do.

Can every individual Autistic person do any possible job? No. But neither can any non-Autistic person selected at random.

If a person who is perfectly capable and qualified for a job is not hired because he didn't make eye contact during the interview, and he doesn't make eye contact because it is infinitely easier for him to process what is said to him if not making eye contact, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because she doesn't communicate with speech, but can do the job without using speech, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because he needs a few minor accommodations and the employer doesn't want to deal with them, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because she needs an aide to accompany her, that's discrimination.

Robison is wrong.

And he's wrong again -- we understand exactly why autism is disabling. It is disabling because of the society in which we live. Let me quote from an earlier article, "Disability is a Social Construct: A Sociological Perspective on Autism and Disability."
Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.
It's perfectly understandable and perfectly explainable. There's nothing mysterious about it.

But I'm tired of explaining away misconceptions. I'm tired of picking my jaw off the floor after reading such outlandish accusations that I'm throwing a tantrum for not getting my way, or unable to empathize with other people's perspectives. I'm tired of seeing such incredulous statements by people who ought to care very deeply that there are other people, including Autistic self-advocates, trying to make the world a better place for their children. And by people who ought to understand a lot more than they do, as evidenced by their harmful and insulting assertions.

Are you tired, too, now? Because I am. And a few days ago, I almost threw in the towel. Because doing this is rarely rewarding and rarely satisfying. It rarely leads to closure and rarely creates lasting or meaningful change. It's wrought with frustration and disappointment, and frequent personal attacks. That's not just projecting either. It actually happens, and in public, too. Thoughts of leaving the hard work to other people crossed my mind. Maybe other people could deal with all of this. Maybe other people could accomplish things, and I could sit comfortably from the sidelines and applaud them when they received their due rewards. I don't have to do anything, after all. I almost made that decision.

But I didn't. I'm still here. And I'm tired. But I'm not defeated. And I'm far from done.

03 January 2012

There's something wrong with you

Trigger warning: Extensive discussion of ableism and identity.

An accessible audio recording of this post:


"I do have [autism] but I don't like to be reminded that I do. It makes me feel abnormal."

"There was something affecting and influencing my mind that wasn't...me."

"It's like I have a disease and there's something wrong with me."

Each of those quotes come from Autistic teenagers whom I know. And in all three situations, I felt powerless and terribly on edge, triggered by the statements that had just been made. The first came in a private message from a young woman, and was disguised as an offhand remark. The second came during a conversation over instant messenger during a conversation about sensory issues, and was written by a young man. The third came from a young woman during a social skills group therapy session, and at the moment she said it, she was crying with her shoulder shaking.

Each situation triggered me badly, but in every instance, the most adequate word to describe my emotional reaction was devastated. I was -- am still -- devastated that young people grow up believing that difference is bad, that autism is something terrible, that there is something wrong with them for being different, for being disabled.

That's how pervasive ableism is in our societies. The most well-meaning of parents, teachers, and professionals unwittingly, and in most cases, unintentionally, perpetuate this mindset -- that something is wrong with you if you happen to be Autistic. If you're different or disabled at all.

If you follow the rationale behind the vast majority of therapies and interventions for Autistic people to its natural conclusion, the end goal of most of these therapies and interventions is to make the Autistic person appear and act as non-Autistic as possible. Applied behavioral analysis works feverishly to eliminate stimming behavior. But the vast majority of stims, such as hand flapping or rocking or pacing or fiddling with objects, do not harm anyone. Including the person engaging in the behavior. What's wrong with stimming? The only thing wrong with stimming is that the vast majority of non-Autistics don't do it, and view most stims as bizarre or frightening. That's all. It's an attitude.

What is the purpose of most social skills therapy? To make an Autistic person indistinguishable from his or her peers. And of course, some therapies from out of left field like chelation, which have the explicitly stated purpose of looking to recover or cure Autistic people. (The point being to make the Autistic person actually become non-Autistic.)

This does not mean that all therapies or services are bad. Certainly not. It's a gross misconception at best and an egregious slander at worst to assert that "Autistic self-advocates" somehow oppose all forms of therapy or services or accommodations. There are positive means of therapy. Plenty of non-Autistic people benefit from seeing a counselor. So can Autistic people. Some Autistic people benefit from medications, often for co-occurring conditions like depression, anxiety disorder, or bipolar disorder. Many Autistic people can benefit from the services of a part or full time aide, whether to assist with travel or seeking employment or with taking care of hygienic needs. Some Autistic people might need more services and supports in order to live happily, while others might need far fewer services and supports -- and some might be able to thrive with none.

It's when the goal of therapy is to eliminate autism -- or the appearance of traits associated with autism -- that there is a problem. This is a reflection of ableist ideas in our society. Even the language commonly used when discussing autism reflects this ableism.

Despite best efforts from both person-first language advocates and Autistic people who oppose person-first language, major newspapers still write that people suffer from autism, or suffer from Asperger's syndrome. Reputable news sources often refer to autism as devastating and frightening and mysterious. Autistic traits are frequently described as deficits. Parents asked about their children often say, "I knew something was wrong with my child." Some parents talk about their children -- young or adult -- in this way even when their children are in earshot or sometimes the same room.

We understand what you are saying. We hear very clearly that something is deeply wrong with us. With our brains. Or with the way we are.

That's more than troubling. It's beyond frightening. The year is now 2012. People have been talking left and right about the successes and advances the autism and Autistic communities have made in the last year. Plenty of folks look forward to expanding initiatives, launching projects, continuing good work. It's the New Year. The prevailing attitude of a new year is always one of hope and optimism. Away with the old; it's a clean slate; we have a chance, 365 days of chances, to do something good and right and worthwhile. And that's perfectly fine.

But unless we can begin to grasp the depth of the ableist backbone to societal attitudes toward disability in general and autism in particular, we will not make any progress to combat these attitudes. More young people will break down in tears, confessing their deep-seated fear of being looked at as abnormal. More young people will be marginalized and made to feel alone. The societal insistence that something is wrong with you will drive more Autistic people into depression and anxiety and learned helplessness, and in some cases, to suicide. This external attitude, all pervasive in our societies, will turn into an internal mantra -- something is wrong with me.

Autistic children need to be taught from an early age that they are okay. That nothing is wrong with them. That there are people like them. That some of those people have gone on to become happy and successful in pursuing their passions. Autistic children need to know that they are different, but that different doesn't mean bad. Autistic children need to know that being Autistic means being disabled, but that disability doesn't mean inability to live fully or happily. Autistic children need to be around other Autistic children, so they'll know there are kids like them. That they're not alone. Autistic children need to have Autistic adult role models in their lives, so they'll know that people like them can grow up and learn to cope with the challenges of being Autistic in a world dominated by non-Autistics.

One Autistic child at a time; that's how the paradigm of something is wrong can change. That's how institutionalized ableism can be fought. Little by little.

I have a dream that one day, no Autistic children or youth will be subjected to something is wrong with you. I have a dream that one day, no Autistic children or youth will be found crying, terrified that some "disease" makes them "abnormal" and less than human. I have a dream that one day, all Autistic children will be raised to have confidence in themselves as people. I have a dream that one day, all Autistic children will know from an early age that they are okay. That nothing is wrong with them.