You call me expressive and miss the struggle it takes

Someone, back when I was in college, insisted I was expressive compared to an Autistic 10-year-old she knew: Yeah, but you’re different, you’re expressive. This post could go in a few different directions that I’d like to list because there were so many issues I (still) have with that statement:

  • that’s it’s okay to not be a wordsmith out loud or at all;
  • that comparing two people with an age difference of ten years – or comparing Autistic people to each other at all like that – isn’t useful;
  • that expressiveness doesn’t just come with words, so stop discounting people who don’t do them out loud well or at all;

and

  • my personal experience with the concept of expressiveness, movement, speech, and trying to go fast to keep up.

I chose the last one.

I may think in words, not pictures or concepts – but getting the worded thoughts to speech is another task entirely. Spontaneous conversation is hard. There’s this thing I do, which is simultaneously talk really fast, and not say half of what I wanted or meant to say. The speed at which conversations go doesn’t always give me the time to say the appropriate thing, so I spit out then closest thing in my head to what I mean. Sometimes it’s the wrong thing or makes no sense.

I don’t use spoken echolalia from pop culture and people around me so much as I use the same format for sentences over and over again, slipping in different words – or I stumble through words, speaking quickly but not always coherently.

I move in the same way I talk: scuffing and stumbling on stray objects. I can’t always find my body in space; I can’t always figure out object proximity because of visual processing and go crashing into it. I can’t cut food or tie shoelaces effectively, and learning how to do needlework was a short-lived venture. My feet drag the ground when I walk or I put my feet down with unnecessary force; there isn’t an in-between. Door frames are my enemy.

Or: I rock to other people’s rocking, flap to other people’s flapping, turn to look in the same direction as anyone I’m with – I’m echopraxic and copy movements. Or I don’t remember how to move at all. If I move, it’s fast, though – and it takes a lot of work.

I am tired of trying to move fast in conversations with non-autistic people (and sometimes other autistic folks). I am tired of the fast pace of movement I set for myself, lest I fall behind non-autistic standards. I am tired that the ways I communicate and move don’t seem to be enough for a lot of people.

Or, if you flip that coin, I am tired of the way people dismiss the struggle to move fast and the struggle to sound like I know what I’m talking about and call me expressive. 

I want to learn to stop going so fast. I want to learn that it’s okay for me to take long pauses, stimming idly as I let the words form and coalesce into sentences.

I don’t want to hear that I’m expressive.

I want to learn that it’s okay to never be able coordinate my movements when I turn toward a door frame, resulting in the inevitable collision. I want to learn that I can focus on my movements, unapologetically Autistic in the ways my hands move, slowing to let myself tap invisible pianos and move my hands back and forth to the music.

I want people to learn to value diversity in communication and movement. I want people to make the effort to understand me, as I make the effort to understand them.  I want people to learn that the ways I speak and move are, now and always, acceptable and valid.

I Fear for My Fellow Autistic People: On Media Misrepresentation

Recently, a piece appeared in a major news outlet. The main premise of the article described a mother’s fear that her autistic teenage son will kill her, her other son’s wish that his brother would die, and the lack of respite services where she lives. It was a very personal piece. This article more than irks me; it plays into very dangerous stereotypes. It plays into the idea that autistic people are inherently dangerous, that we are burdens. And dangerous stereotypes in the media, whether in fiction or opinion pieces or livetweeting an autistic person’s meltdowns have real life consequences.  

First, let’s talk about autism and violence.

Autistic people have many dangerous stereotypes about violence, particularly mass shootings (the idea that we are likely to be perpetrators) surrounding us; the mass shooting one is false. However, when individually aggressive, we usually have an outside stressor. When I was in school before college, it was people touching me; the overwhelming sensory overload; the frustration of not being able to put words to all my feelings; and the constant wear and tear of terrifying social interactions and bullying. I was flailing hands, panic attacks and tears, bolting down the hall, and slapping anyone who touched me. Fortunately for me, I was not considered intimidating and dangerous for a variety of reasons, just in need of more support. 

But continual aggression is usually a sign that something is very stressful. This is a checklist that can help identify those sources. Tumblr user Lysikan, a non-speaking autistic person, has created a set of posts that can help reduce meltdowns – one of the primary times an autistic person can become aggressive while overloaded and panicked.

Next, let’s talk about her other son’s hatred and death wish for his brother, and media narratives surrounding autism, disability, and our murders.

And also what I fear almost more than anything, the murder of another autistic or disabled person by their caregivers or family members. Let’s talk about filicide. Let’s talk about how the same story occurs over and over again. A disabled person is murdered by a caregiver or family member. The media picks up the story. Sometimes they report on it as a mercy killing. They almost always talk about the burden of caring for a disabled person. The victim is a throwaway in their own story. Many people have already explained this in countless blog posts. It should be beating a dead horse, but it’s really not. Many people act on their wishes. I have heard of far less, if any, killings of caregivers by autistic people than killings of autistic people by caregivers. This is why I fear the death of autistic people at the hands of caregivers and family members far, far more.  

Finally, let’s talk about responsible journalism, disabled people’s right to privacy – and real life consequences.

I will absolutely agree that there is a need for more respite services. I will absolutely agree that more services need to happen! But there are frankly better ways to deal with this than publicly posting in a major news outlet the intimate details of an autistic person’s personal life. There are better ways to deal with this than to promote dangerous stigma. There are private actions that could be taken that would protect the autistic person’s confidentiality and not promote stigma.

One is to actively work to reduce the autistic person’s meltdowns using the strategies linked above. Another, if this resource is accessible, is to see a professional about your feelings of stress or anxiety. And – these kinds of stories are not isolated. They are patterns; “autism parents” routinely post in and on public spaces and blogs intimate details of their child’s life and how miserable their child makes them.

This is extremely dangerous for autistic people.  First, it effectively outs them to the world, and could make it impossible for them to do things without people realizing it and judging. Second, it directly leads to real life consequences. Elizabeth Bartmess notes in “Autistic Representation and Real Life Consequences” that

This is shown in several similar ways in fiction and in real life. Autistic people are represented as burdens on others, particularly their families, when they embarrass neurotypical siblings or have greater support needs. This is more common for characters written to “low-functioning” stereotypes…. In real life, we are presented as burdens as well… This has consequences. At the extreme end, media or other parents justify parents murdering autistic children. Abuse is common, by friends, people on the street, caregivers, and others such as paid service providers, foster care providers, and transportation providers. In general, people with developmental disabilities have drastically higher rates of abuse; abusers may target autistic individuals…

The Pacific Alliance on Disability Self Advocacy (PADSA) resource guide on media misrepresentation states, “Even when people don’t directly cite these stories, they seep into culture. People form their opinions and take their actions based on prejudices.”

Both the autistic teenager’s mother and this major news outlet had a responsibility to autistic people to report in a way that does not increase stigma and cause more consequences for autistic people. They chose the stigmatizing, stereotyped, and dangerous way of talking about autism. I am afraid of these stories and will continue to speak out against them. I am not afraid for myself, but for all my autistic brethren living in dangerous situations. I think of all the people that may make harmful or fatal choices because of this irresponsible news story and fear for all my autistic and disabled brethren.

Additional Resources

On Disabled People’s Right to Privacy (Especially Those With Caregivers) and Media Misrepresentations

On Responsible Reporting and How to Respond to Media Narratives of Disabled People

For Parents on Autism Acceptance, Meltdowns, and Aggression

On Filicide

Other Articles Related To This

#AutisticPrideDay 2016

I am not sure how much I have to say; this is the third Autistic Pride Day I’ve written something for. It feels as though I have exhausted and extolled the mantras of pride, taking up space, having loud hands, and of having a neurodiversity community that will have each other’s backs as surely as we carry the weight of the dead, of injustice, and of trauma that can result in emotional whiplash among us. I will try anyway.

There is something to be said about the value of connection. There is something to be said about a group of autistic adults and self-advocates and activists whose previous generations are dead and lost, in institutions or just dead. There is something to be said about a group of autistic adults and self-advocates and activists whose future generations we try to teach neurodiversity and self-acceptance and self-advocacy to.

There is something to to be said about the pride we carry, that we carry as surely as we bear the pain of discrimination and the pain of things done to us. We carry it like the candles we hold up to the dusky, darkening sky on our Days of Mourning, lighting them together to build a torch. The torch has the power to light the way, or set fire to what we’ve built already.

The pride we carry can change things and people everywhere. The Lancet, a major medical journal, published an article on Autistic Pride. The Republic of Malta wants to build an inclusive rights agenda for autistic adults. California is shutting down its institutions for people with developmental disabilities. Maryland voted to end subminium wage for disabled people. All the Weight of our Dreams, the anthology by autistic people of color, has a webpage and is forthcoming. We had two Democratic candidates for president notice people with disabilities as a voting bloc and start supporting disability rights legislation. The FDA is taking comments on a proposed ban on contingent electric shock devices used on disabled students. There is a battle for the future of autism advocacy – something that previously would have been unheard of. More and more we’re creeping into mainstream publications like the Washington Post and other places.

Many of us are traumatized and a lot of us are scared. Many of us are in pain and many of us have doubts. Many of us have negative self-image and many of us are not sure how to move in this world. None of that has to preclude pride. To my autistic brethren who are there and talking about pride: remember that the torch we carry has the power to light the way, or set fire to what we’ve built already. And to my autistic brethren who don’t yet know how to be proud: I will wait for you, always.

 

The Real Tragedy of Eugenics and a Primer on Buck v. Bell

Many of the victims were, like Carrie [Buck], perfectly normal both mentally and physically–and they desperately wanted to have children.

-Adam Cohen, Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck

The tragedy of eugenics is not that it happened to ostensibly non-disabled people. The tragedy of eugenics is that it happened at all. The tragedy of eugenics is that people used the prospect of disability to justify it. The tragedy of eugenics is that anyone, disabled or not, lost their right to choose if they wanted children. They used the prospect of disability to justify sterilizing anyone they saw fit – disabled people, people of color, sex workers, women, low-income people, or a combination of those, for the most part.

Cohen is not alone in asserting Carrie Buck, the subject of the 1927 Supreme Court case Buck v. Bell, was mentally “normal.” Journalist Harry Bruinius discusses it in his book Better for all the World. Paul Lombardo has many words to say about Carrie Buck’s normality as well as that of her daughter Vivian’s in his book Three Generations, No Imbeciles. The Sterilization of Carrie Buck  by J. David Smith and K. Ray Nelson talks about Carrie Buck’s family being actually normal.

Cohen is not alone in therefore implying that there was a correctly targeted group. That Carrie Buck’s sterilization was wrong because she was “normal” and should never have been in the Virginia Colony for Epileptics and the Feebleminded. In one regard, he is correct. Carrie Buck should never have been in that institution. Neither should anyone else have been.

.  .  .

Carrie Buck was born in Charlottesville, Virginia, in 1906. Eugenics took hold as Carrie grew up. Her father Frank was dead, or had simply left – no one knew. Her mother Emma took to the streets and got put on charity lists to try and take care of her children. Emma may have had substance abuse issues with drugs. Emma sometimes went to having sex with different men to try and make ends meet. She had more children. A family called the Dobbses took Carrie from Emma when Carrie was three or four. Emma Buck eventually was put in the Virginia Colony. When Carrie was seventeen, the Dobbses’ nephew Clarence raped her. A pregnancy resulted. The Dobbses wanted to avoid scandal. They packed her off to the Virginia Colony as “feebleminded” after she gave birth to a girl, Vivian. Facts of the case were not observed. 

The superintendent chose Carrie Buck for a test case of Virginia’s new sterilization law. Carrie went before the board of the institution. They voted to sterilize her. Her appointed guardian filed an orchestrated appeal. It was not really on her behalf. The appeal traveled through all the court systems until it reached the Supreme Court.

Buck v. Bell was a devastating decision by the Supreme Court. The 8-1 decision – the only dissenting member Justice Pierce Butler – said that it was legal to sterilize Carrie Buck, a patient at the Virginia Colony for Epileptics and the Feebleminded. They said it was legal to sterilize people, mostly those in institutions, without their consent. It upheld the Virginia law that had passed three years earlier. Justice Oliver Wendell Holmes, Jr., wrote this infamous statement in the opinion: 

It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.

Buck v. Bell was an injustice done to Carrie Buck. It would have been if it were proven today she actually had an intellectual or developmental disability. It was an injustice to the tens of thousands of people, mostly in institutions, who came after her. It was an injustice to the women in the California prisons who underwent forced sterilization as recently as 2014, and to the women who went before a Tennessee district court prosecutor who forced plea deals involving sterilization. Buck v. Bell has never been overturned in its entirety, permitting legal loopholes. People are still being sterilized today, in the United States and elsewhere.  It is not considered a priority to overturn Buck v. Bell in its entirety. State eugenics laws were not overturned until the 1970s and 80s.

Buck v. Bell reached beyond the borders of the United States. The Nazi Party cited it as justification for some of their war crimes. They drew upon American eugenic ideals. United States officials acted as the primary agents in prosecuting Nazi officials, doctors, and others. Despite its association with Nazism, eugenics is not dead. Nor is its height and prominence a distant memory.

.  .  .

I encourage you to read the following if you have access to them. Sources to think about, and sometimes critique:

Books that Cost

  • The Nazi Connection by Stefan Kühl
  • Better for All the World: The Secret History of Forced Sterilization and America’s Quest for Racial Purity by Harry Bruinius
  • In the Name of Eugenics by Daniel Kevles
  • The Sterilization of Carrie Buck by J. David Smith and K. Ray Nelson
  • Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck by Adam Cohen
  • Three Generations, No Imbeciles by Paul Lombardo
  • War against the Weak: Eugenics and America’s Quest to Create a Master Race by Edwin Black
  • A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era, editor Paul Lombardo
  • Fit to be Tied: Sterilization and Reproductive Rights in America, 1950-1980 by Rebecca Kluchin
  • Inheriting Shame: The Story of Eugenics and Racism in America by Steven Selden

Physical Archives

  • The Carrie Buck archives at the State Library of Virginia (Richmond)

Resources and Articles that are Online/Free

Me Before Ableism

This post is loosely tied to the new film Me Before You. It is a story of me before ableism (#MeBeforeAbleism– a hashtag that sprang up in response. But in some ways, this post has nothing at all to do with the film, insofar as it does not talk directly about it. There’s a good article here by Emily Ladau if you need a primer on Me Before You.

.  .  .

Me before ableism: not pure. Not innocent. Certainly not. But I moved through the world for quite a while not really caring how other people thought of me. I was happy to be alone, digging in the dirt with a stick and creating rich tales of a city for ants – and building it in the old roots of the pine trees with raisin boxes. Yes, I knew I was different. I had received the diagnosis of ADHD in the first grade. To me, all that meant was that things were vivid and bright and I could move fast and talk fast. It meant that I could create the most beautiful stories and sit at my desk at home and write story after story about Tabby the brown tabby spy cat. At 14, I was diagnosed as autistic.

I am not sure when not caring what people thought about me and how they treated me and how they told me I was weird changed. Maybe it was in the third grade, when I had sensory issues about sitting next to my best friend’s much younger sister and did not know how to say it properly before I had a small meltdown. My best friend’s parents shunned me for the duration of our friendship. Maybe it was sometime in elementary school when someone sneered at me, “I heard you have a behavior chart.”

I am not sure when I started trying to stop being myself and started trying to be impossibly good. This made me feel even more broken because I didn’t know how to be the “behaviorally perfect” child. School constantly overwhelmed me through much of my life – the loud and jam-packed hallways, the jeering students, the constant not having room to breathe, the bullying. The only places I found true refuge was in the art teacher’s classroom and sometimes in other teachers’ classrooms. I never understood why I couldn’t just stop interrupting in class, why I couldn’t stop lashing out at people who touched me, why everything was too loud and and impossibly crowded for me. I knew I sometimes scared people and that everything I did was fodder for cruelty. I set a bar too high for myself.

.  .  .

I never went through any abusive therapies. I still learned that the way I moved through the world was wrong to people. I still learned that I was too difficult. The kid on behavior charts at school. The kid who freaked out at everything. The kid who lashed out with little to no provocation. To the kids at school, slurs.

Despite, for some period of time, making efforts at this – I never stopped looking visibly disabled in some way. Now I have come into autistic culture and community and the broader neurodiversity and disability rights community, and I am trying to unlearn the damage ableism has done with the help of friends and community.

Already I am less ashamed of being visibly different. Already I am less ashamed of not ever being able to hide. Already I am learning how to help others with the same feelings of shame.

Already, I know (even though I thought I knew already) that I am undeniably – and not regrettably or tragically, but proudly – Autistic and disabled.

the world is larger than my recycled words

How do I feel? The world is larger than the recycled words I can spit out to try to convince people of disabled people’s value. On December 2, I started my second day of work; on December 2, gunmen shot up Inland Regional Center in San Bernardino, CA. It was the second mass shooting of the day. Inland Regional Center served people with developmental disabilities. I followed a new routine, too tired in the evening to draft a blog post as my newsfeed exploded with the news.

Speaker Paul Ryan announced his intent to push for the Murphy Bill. The shooters shot up a center to serve people with developmental disabilities. The Murphy Bill intends to curtail the rights of people with psychiatric disabilities.

On December 2, I also received an action alert in my inbox from the Arc. The Senate was about to repeal parts of the Affordable Care Act – parts that have helped people with disabilities. On December 3, my Facebook trending topics switched to Planned Parenthood as the Senate bill passed their version of the bill to federally defund Planned Parenthood. A sidenote was that the bill also repealed the Affordable Care Act, which has helped many people with disabilities. President Obama is expected to veto the bill.

People expressed shock and sorrow that someone would do this to a center that serves developmentally disabled people. People fawned over the woman who thanked an autistic person for decorating a cake. Representatives and Senators tweeted heartbreak about San Bernardino. They’ve done their good deed now, right?

* * *

Please explain to me how it is a good deed to be objectifying autistic people into inspiration porn for decorating a cake. There are far more extreme examples, like having to hold a Day of Mourning: Remembering Disabled People Murdered by Caregivers because so many people murder the people they are supposed to be providing care and/or support for. Then explain to me how people can express shock that someone shot up a center that serves developmentally disabled people.

Please explain to me how it is a good deed to tweet heartbreak about San Bernardino when Congress just decided to repeal key provisions of the ACA that would materially help disabled people. Help, rather than just fawn over someone decorating a cake and think they’re helping, or assigning buddies in class to that poor disabled kid, or whatever.

Congress is moving the Murphy Bill rapidly through. H.R. 2646 is the, as Ari Ne’eman put it, “perversely named” the Helping Families In Mental Health Crisis Act.

The Murphy Bill would fundamentally strip people with psychiatric disabilities of their rights. It would
       community-based services.
  • This includes cutting the budget for the Substance Abuse and Mental Health Services Administration (SAMHSA)’s community integration projects.
  • H.R. 2646 will also encourage states to allow forced-medication programs. These would be through court systems. The best way to help people get mental health treatment is to reduce stigma, make it available, and provide support. The solution is not forced treatment.

It was introduced in the wake of Sandy Hook in 2013 to manipulate the public. Don’t let them.

Call or write your representative today. Tweet at your legislators. Find your rep at http://www.house.gov/representatives/ and then use the generic contact us form. Call to the Capitol Switchboard at 202-224-3121 and ask for your representative and ask them to oppose the Helping Families in Mental Health Crisis Act (HR 2646).

There is a federal relay service for d/Deaf peoplelisted at the bottom here  http://www.house.gov/content/site_tools/accessibility.php

* * *

Explain how the Murphy Bill helps anyone with disabilities. Explain how fawning over a cake helps people with disabilities.

Explain how the “good deeds” work then.

Re: Autistic boy, 11, kills himself

Re: Autistic boy, 11, kills himself

I phrase it that way. I don’t phrase it the way the article did. Blaming the autism and ADHD for suicide. This was a boy who befriended a locust in a tree. His mother said he felt like the adults at his school didn’t care and could not make connections in his class. Had a gift with animals.

***

Isolated and miserable, I managed to find refuge in certain places. The art room, where the art teacher encouraged me to explore with sharpies and gel pens and acrylic paints. The debate room. My 10thgrade English teacher’s classroom. The scene shop, where I would frenetically sweep and clean the entire area after school.

Unlike Shane Laycock, I had supportive adults in my high school. I don’t know how, considering the story told by so many of us of being shunned by even the adults who are supposed to care. I don’t know what would have happened without them.

***

It was never autism’s fault.

In middle school, I arrived with a set of liberal opinions from one of my parental units at a private school and set the school upside down. At a certain point, curiosity about the new student turned into vitriol. It was never autism’s fault. The way they treated me created a small, scared, desperate teenager by the time I hit high school. Failure to understand difference is at fault.
***

I spent most of my time in trees, befriending neighborhood cats, playing with my gerbils, reading, or lost in my head. I once climbed a 40-foot-tree. I lived in fantasy worlds.

Biking is still my outlet, speeding up and down hills, feeling the wind in my face.

***

He said he felt like the adults at his school they didn’t care. This is the experience of so many like us, shoved aside and written off and turned away. Not me (in terms of adults), but so many of us.

How can we make sure that people start to care? That people care about people like us? It was never autism’s fault. It is a society that teaches difference is failure, that autism is tragedy, perpetuating the constant isolation of autistic people and other people with disabilities.

And when talking about this…

When talking about this…

Talk about a boy who walked barefoot and befriended locusts… 

Talk about a society which chose to isolate him, talk about a society that failed to accept him. Do not blame him or disability. 

Yes, in a perfect, non-ableist world, there would still be forms of disability. Certain things are disabling. But to turn away from the role society plays in perpetuating isolation would be negligence. 

Defining Ableism

Defining Ableism

Note: This is U.S.-centric

***

Sometimes it feels hard to define ableism when it is all around us and everywhere and so much more than language. Language contributes to, and perpetuates, ableism. Ableist acts can include language.

But I keep thinking of the time in Fall 2013 when I started having seizures from a medication interaction. The seizures were atypical. No one knew what they were, least of all me, too out of it to tell that something was actually terribly wrong.

What I most vividly recall is not even the night I had my worst episode, but the day after, when my friend and I talked about it and she’d been terrified to call 911 because of the way I was presenting. Because I was slurring incoherently like I was having some sort of non-neurological or physically based episode, and she knew what happens to people in the psychiatric systems if they go wrong. She knew the way I was presenting would land me in the psych ward.

More drastically, I think of the man who ended up in the mental health system during a crisis, and the state of Maine put his cat down and sold his home.

When we have to be so afraid of our psychiatric system…? That’s the result of ableism.

Sometimes I think about all the dead and murdered people too, like Dustin Hicks, a recent one close to home. My chapter just had to write a statement on it. The news outlets declined to even reply to my encouragement to publish all or part of the statement. One news report discussed his mother and reasons why she might want to kill him. None mentioned that he deserved to live, or that his death was a tragedy. We know almost nothing about him.

When we have to issue statements over and over again urging people to report responsibly and call our deaths, not our lives, tragedies? That’s the result of ableism.

I think of all the various intersections we have between other identities, too. We are not a monolith. I think of the many, many people of color with disabilities who face racism and ableism, sometimes with deadly or injurious consequences. I think of the #FreeNeli campaign, and how long it took many of us white folks to start tweeting on it after the initial call for tweets. I think of Neli himself, unjustly incarcerated for being black and autistic, in isolation. The governor finally did issue a conditional pardon.

I think of Kayleb Moon-Robinson, one of the many students of color and students with disabilities disproportionately referred to law enforcement. An eleven-year-old charged with a felony. The school to prison pipeline is real…

I think of those of us who hold many identify facets, like being LGBTQ+, a person of color, a religious minority, as well as being disabled.

When we have those intersections meet in a dangerous way, amplified by multiple marginalized identities, the ableism and other -isms and -phobias become intertwined, and not the result of purely ableism. These intersections matter.

I think of how someone got kicked out of their house by their roommates for being autistic.


I think of history, too. I think of the sordid history of locking people with psychiatric disabilities, intellectual disabilities, and developmental disabilities in institutions…

I think of the nasty history of eugenics. (The .pdf is American and German history of eugenics only, as I lack a college library to find the other physical sources. Also, there’s a typo at one point where I meant to say “Indiana passed the first sterilization law in 1907.”). How it affected so many with disabilities (and other intersections).

I think of how nowhere was physically accessible, how Ed Roberts couldn’t go to school unless he lived in the infirmary.

I think of activists crawling up the Capitol steps to protest and demand the ADA’s passage. Don’t let the black and white photographs in the coverage of the Capitol Crawl let you think that this was long-gone history. We only just hit 25 years of the ADA.

I think of the long, long history ableism has. Ableism is not new.

***

Could I go on? Yes.

I fear being too depressing. I fear a lot of things. Mostly, I am sometimes frightened of the world.

We could stand to be gentler of people still learning the new words that change so much. Ableism is far more than a list of words and we need all the good hearts we can find. Clumsy language on the part of someone who is trying (and who may have communications-based disabilities!) is something to be less concerned about than the dead and wounded around us. Clumsy language on the part of someone who is trying should, perhaps, receive calling in, not calling out.

Ableism seems insurmountable, and there will never be a great sweeping moment where we crush it entirely. But I think we’re making a dent. We’ve come 25 years since the ADA. Seattle has some crappy curbs that Disability Rights Washington is taking them to task for. Ableism still goes on and on. But we’re making a dent. The largest non-profit in the nation dedicated to eradicating autism had its donations drop. Their president is resigning, though this may have been a planned move. We are producing documentaries of our pain and sorrow, of our challenges and stories, of our hopes and dreams.


We have people among us becoming lawyers and professionals and influencing that way. We have others in grassroots advocacy and policy advocacy. We have those whose advocacy is for themselves only, fighting to survive and be heard and respected (and that’s okay). We want our brethren to survive. 

Problems with Lorna Wing

Problems with Lorna Wing
I have personal problems as well as general problems with Lorna Wing.
Lorna Wing created Asperger’s syndromeas an interesting new syndrome to try and get people to accept their kids needed at least some services without the stigma of an autism label. Wing played into the binary that autistic people must either be high or low functioning, a binary I reject.
When I was diagnosed in 2007, I was nevernever told it was a disability because high functioning and quirky and depressed are all your problems! Or lack of problems. You suck with people, but everything else is fine! Except you’re depressed, but you’re a teenager, of course! Everything was downplayed.
I now call myself autistic. Under the DSM-IV, I would have gotten an autism diagnosis anyway at the age of two or three. But I was 14 when I was diagnosed.
Hans Asperger never called his patients as having Asperger’s syndrome. He called their behaviors autistic. He saw a multitude of patients, but up-played all of them to save them from Nazi Germany. It was Lorna Wing who found his works and decided to create Asperger’s as adistinction that has had consequences. It is what has enabled organizations to write many of us off as “oh, those high-functioning aspies are at it again saying we shouldn’t cure that terrible disease autism!” It is what has enabled people to write individuals with an Asperger’s diagnosis off as geniuses needing no services. It has enabled people to say, upon the folding of Asperger’s into autism spectrum disorders in the DSM-V,that we’re pathologizing normal people and robbing “significantly autistic” people of services. (The link is my response to the article saying that).

Lorna Wingcould have told the truth about Kanner creating diagnostic restrictions without evidence. About Bettelheim and Rimland creating interpretations of autistic people without evidence. Instead she created Asperger’s, and with it a divide that seems very hard to reconcile. 

Response to io9 article by Jennifer Sarrett

Recently io9 published an article by Jennifer Sarrett entitled “Is the Changing Definition of Autism Narrowing What We Think of as “Normal”?

The main premise of the article is that the DSM-V is too vague. According to Sarrett, this results in disparities in diagnoses among minority communities. Sarrett believes this will result in people being “pathologized” who would not have had a diagnosis before. Sarrett also states that this will stigmatize those who are “more significantly autistic.”

It is true that children of color are less likely to get a diagnosis of autism. But it is the implicit racial bias in the psychiatric system that sees autism as a white, male disability that I fault greatly. This bias will still result in diagnostic disparities. This is even if the DSM-V became less what Sarrett calls “subjective.” To blame it on the DSM-V for the most part is to deny the fact that racism is a core aspect of this.

Sarrett is partially-correct for stating some of the other reasons. This is that many families of color also don’t always have access to the same type of tools to get a diagnosis. This needs to change. We need to start listening to autistic people of color and their families. (You can start with MorénikeLydiaTimotheus,and Kerima, and many more, including the contributors of this upcoming anthology by the Autism Women’s Network.

The second part of Sarrett’s argument is that “people who would not previously have had a diagnosis are now being pathologized.” This is only true if you buy into a pathology model. It is true if you believe autism is the bogeyman in the closet. It is true misdiagnosis exists. But that is a separate issue than autism being a spectrum. There are many different people and presentations of it. And I doubt anyone who is autistic – whether they get a formal diagnosis or not – is treated as “what we think of as normal.”

Would Sarrett rather such divides over autism and Asperger’s diagnoses occur in the autism community? The folding of everything into Autism Spectrum Disorder creates a way for everyone to get supports. Many people with an Asperger’s diagnosis would be routinely denied supports and services. The diagnostic differences were the age at which someone began speaking. This is not the best way to describe what someone needs supports for. I have my own problems with the Level 1, Level 2, and Level 3 aspects of the DSM-V. These seem to be high/low functioning labels separated into three different categories. Ironically, this is what Sarrett seems to be doing, just without the explicit labels — “less significant forms of autism” vs. “significantly autistic”.

Or would Sarrett rather just diagnose people in the original Kanner sense, and cut out a large portion of the population for services? Leave an entire population of people stranded not knowing why they do the things they do and knowing they’re different but not having a name for it, nor supports to help them.

There is another argument in Sarrett’s writing worth addressing. Sarrett believes that by giving supports to everyone, you take away from those who need it most. These are people Sarrett terms “significantly disabled.” But why would that mean you have to take away from someone else to give to someone else? Need is need. Most autistics who seem successful or semi-successful by neurotypical society’s standards probably would not have gotten there without accommodations and dare I say it – significant support (I am not saying the goal of all autistics should be to look successful by neurotypical standards and achieve ~normalcy~, either). I know I needed heavy doses of support all my life to make it through all my schooling and other personal areas of my life.”

Finally, Sarrett writes that when “Rates of people with less significant forms of autism will rise and become the autistic norm… people who are more significantly autistic appear super-disabled, and then become super-stigmatized.” Except that’s already the case. Autism Speaks and groups and people before them – Kanner, Bettelheim, and Rimland – have made sure of that. Considered a prognosis worse than death, then and now, autism remains the bogeyman in the closet for so many people.

Lastly, authors writing articles on autism need to consult autistic people. This article presumes to speak for autistic people’s needs, and doesn’t do much to help in that regard. Sarrett may think the article is helping “significantly autistic” people, as the article words it, but I would argue that it’s throwing all autistic people under the bus. It creates division and more fighting over who gets the supports when everyone should receive whatever they need.