Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Category: Media Representation

A is for Autism Acceptance

This post originally appeared on April 1, 2015. The book that resulted from this Autism Acceptance Month project, The ABCs of Autism Acceptance, is available from Autonomous Press.

Autism Acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses.

[image description: A quote card, white with olive green highlights. It says “Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses…” – Sparrow R. Jones. Beneath the quote is the word ACCEPTANCE in all capital letters, an ornate font, and olive green. The bottom left corner of the image says FB/UnBoxedBrain, indicating the facebook page of the creator of the quote card.]


A is for Acceptance

You may have noticed in the last half-decade or so that there is a growing trend toward speaking of autism acceptance instead of autism awareness. By now, most of you probably know why people are making that choice, but just yesterday I saw a lot of people arguing about the topic, so I think we still need to make it clear.

Autism awareness, in and of itself, is not inherently bad. By now, most people are aware that there is a thing called autism but, in my experience, most people are not very aware of what that autism thing actually is. So I do, at least partially, agree with the people who say we still need more awareness.

What I have a problem with is the form that awareness tends to take.

A week ago, I had to stop listening to the radio because all the stations were already gearing up for April with lots of “awareness” and lots of advertisements about awareness events. I heard a lot about children with autism and nothing at all about Autistic adults. Not only do we “age out” of most services when we turn 18, but we also become invisible. It’s as if the entire world stops caring about us once we are no longer cute children to worry about and, instead, inconvenient adults to be stuck with.

I heard a lot of scare talk, including hearing us repeatedly compared to diabetes, cancer and AIDS. Diabetes, cancer and AIDS kill children. Autism does not. Diabetes, cancer and AIDS are illnesses laid on top of a child’s underlying identity — they can change a child’s philosophy but they do not change innate aspects of their identity. Autism is a cognitive and perceptual difference that is so deeply rooted in our neurology that it cannot be separated from our identity. Beneath cancer, there is a healthy child hoping to break free. Beneath autism, there is more autism — it’s autism all the way to the core. Autistic children do not “go into remission,” they develop coping skills and they mature into Autistic adults, and they work to learn ways to communicate with those around them. There might be suffering that can be alleviated — seizures brought under control, gastrointestinal disorders treated, methods learned and sometimes medications taken for mitigating anxiety. Autistic adults often do not resemble the Autistic children they once were — we grow and develop all our lives — but Autistic adults are still every bit as Autistic as they were when they were children, no matter how many coping skills are learned, no matter how “indistinguishable from their peers” they become.

At the center of the autism awareness movement is an organization known as Autism Speaks that functions like a giant magnet, drawing all donations to them. In the ten years that Autism Speaks has been around, local organizations have watched their funding dry up. Autism Speaks dominates the autism charity scene now and, as a result, they have the power to set the tone when it comes to “awareness.” And that tone is one of despair and misery. We are portrayed as burdens who break up marriages and destroy the lives of those around us. We have been compared to “lepers” (an outdated term for people with Hansen’s disease) and our parents to saints for taking care of us. The awareness that is being put forth is shaped around a rhetoric of fear. Autism Speaks is one of the few organizations that is widely hated by the population it was established to serve. Only one Autistic person was ever accepted in a leadership role and he resigned, saying, “No one says the Cancer Society does not speak for them.  No one describes the Cystic Fibrosis Foundation as an evil organization.  All that and more is said of Autism Speaks every day.  I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.”

So that is autism awareness. That is what we are rejecting.

What is autism acceptance? Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not. Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of autism and Autistic people in ways that presume competence and communicate value.

“Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you, and not despite your differences, but because of them.”” – Kassiane Sibley

“Acceptance is about recognizing that an autistic person is, and will always be, different but not less — even as some challenges are addressed. ” – Amy Sequenzia

“Autistic people are not viewed as able beings, this view makes us suffer.” – Emma Zurcher-Long

“Autism Acceptance means supporting the Autistic person in learning the things they want to learn and in gaining the skills they need for what they want to do. Autism Acceptance is the radical assertion that at the level of broad, overarching principles, what Autistic people need isn’t that different. We need to be accepted for who we are. We need to hear that we’re OK, we need to hear that the things we have trouble with don’t make us broken or lazy or horrible people. We need people’s actions towards us to reflect that. We need people to listen when we say we need help, and we need people to listen when we say we don’t. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities.” – Alyssa

“Good teaching is based in deep respect for the individual, the cognitive learning style of each student, the shared excitement about the topic of study. Best practice in teaching autistic students isn’t any different, though these faculty would be insulted if I told them so.” – Carolyn Ogburn

“Over the past two years, I have asked Tyler many times how he feels about having autism. And while he clearly understands how the autism negatively affects his social skills and attention, he always tells me that he likes his autism. Although he has also told me, at times, that he wants to be “normal,” he continues to insist that his autism helps him. So if he likes his autism, do I really have the right to counsel him otherwise?” – Kymberly Grosso

“If you have the autism acceptance song in your heart, add Paula and Estée’s voices to your blog rolls, Subscribe to their blogs. Tweet, ‘like’, and show your respect and support to these powerful women. Don’t allow their names to fade into internet oblivion as others try to opt into autism acceptance because it is now the fashion. They were doing it before it was cool. It is easier to say accept autism now because others paid the high cost for daring to say it before us.” – Kerima Çevik

Acceptance means accepting yourself as you are, even in the face of persistent attempts throughout your life to get you to be what you are not. Especially in the face of persistent attempts throughout your life to get you to be what you are not. The best you can be is Autistic. Let me explain. “The best you can be is Autistic” means that you are at your best when you are being fully who you are, able to express yourself and move through the world in ways that are right for you, comfortable for your body. “The best you can be is Autistic” does not imply impairments, “less than,” “can only do so much.” On the contrary, it means that you are who you are- your pervasive Autistic self (which actually includes those parts that observers might think are “typical” just because they can’t see anything that looks unusual to them), and that encompasses all of who you are, not just the parts that have been “permitted,” and not just the stuff that whatever the DSM of the moment says are your deficits.

“You have the right, or should, to grow in ways that are good for you, that you think are good for you. You have the right to make changes in your life that you think are the correct ones for you.” – Paula C. Durbin-Westby, founder of Autism Acceptance Day/Month/Year/Decade

ABCs of Autism Acceptance

[image description: a full-color image of the book cover of The ABCs of Autism Acceptance by Sparrow Rose Jones. The cover features a semi-abstract drawing of the alphabet done in rainbow colors and a doodle style of drawing. Copyright 2016, Sparrow Rose Jones and Autonomous Press.]

Stop “Diagnosing” Donald Trump

campfire

[image description: a small campfire burning in the dark night. Copyright Sparrow R. Jones, 2017]


Everywhere I turn, it seems, someone is calling the current United States presidential administration “crazy” or “insane.”

Do you not realize that these are slurs along the lines of The R Word? Do you not realize that everything I have ever said about the R Word applies to the C word and the I word as well? Using words that describe vulnerable populations to describe the actions of those who are not members of that population who are engaging in behavior that displeases or distresses you is the verbal equivalent of picking up a disabled person to use them as a bludgeon. You’re not likely to hurt your target but you are crushing those of us who become your lazy go-to when you can’t find the words you really want.

“But wait!” someone always responds. “You don’t understand! He really is crazy! He’s got Narcissistic Personality Disorder! A psychology professor said so!”

First off, that professor was behaving unethically if they diagnosed Donald Trump without even meeting him.  There is a rule in the psychiatric professions called the Goldwater Rule, so called because it arose after similar speculations were made about Goldwater.  Section 7.3 of the APA Code of Ethics says:

On occasion psychiatrists are asked for an opinion about an individual who is in the light of public attention or who has disclosed information about himself/herself through public media. In such circumstances, a psychiatrist may share with the public his or her expertise about psychiatric issues in general. However, it is unethical for a psychiatrist to offer a professional opinion unless he or she has conducted an examination and has been granted proper authorization for such a statement.

That means that it is unethical for a professional to announce a diagnosis of Donald Trump. And if you are not a professional, you are not qualified to diagnose Donald Trump.  The only people qualified to determine if a person has a psychiatric disability are trained professionals and the individual themselves.  Furthermore, revealing a person’s diagnosis without their explicit permission is a violation of HIPAA regulations specifically and a violation of privacy in general. No one has the right to disclose another person’s medical information without their consent.

Secondly, if someone you view as having authority has told you that Donald Trump has Narcissistic Personality Disorder (NPD)  (or if you have taken it upon yourself to  lay-diagnose him as such), you are wrong.  The doctor who wrote the diagnostic criteria for NPD  has publicly stated that Donald Trump does not meet the criteria. Dr. Frances goes a step further and explains why these casual lay-diagnoses of public figures are so harmful. You really should read his words: This Doctor Nailed The Problem With Diagnosing Donald Trump With Mental Illness.

I have even seen some people suggesting we “push for Trump to submit to psychiatric evaluation.”  Forcing psychiatry on an unwilling person is the height of human rights violations.  I never thought I’d find myself in the position of defending and protecting Donald Trump, but society has put me here by insisting that the basic human rights we hold so dear do not apply to him. Call him evil, call him authoritarian, call him a fascist …. but do not suspend his human rights unless you are willing to see your own human rights suspended next.

It is unethical to diagnose a person without an examination, regardless of credentials or lack thereof.
It is a human rights violation to attempt to force a person to submit to psychiatry against their will. Some reading in the psychiatric survivor literature will help you to understand what a gross violation it is.
Fighting dangerous leadership by weaponizing psychiatry against the president will only serve to hurt vulnerable Americans as those arrows will be twisted by the government and turned against us.
We already have a Vice President who supports the use of involuntary “anti gay therapy” against minors. We do not need to use their evil tactics against them. We can fight evil without becoming evil.
Study authoritarian regimes in other countries and other decades and you will see psychiatry repeatedly being weaponized against the resistance.  Audre Lord said “the master’s tools will never dismantle the master’s house.”  Nick Walker brought that philosophy into the battle against the pathology paradigm with the essay “Throw Away the Master’s Tools.”
Authoritarian dictators are the ones who routinely weaponize psychiatry to silence the Resistance. Those aren’t the tools we need to be using to dismantle the master’s house.

Autism Speaks Hasn’t Really Changed Anything

millipede

A millipede at the Antietam Battlefield. It’s coming right at you! Photograph copyright 2016 by Sparrow Rose Jones.

You can’t have missed it. It’s everywhere you look: the announcement that Autism Speaks has dropped the word “cure” from its mission statement. It’s being lauded as a great sea change in the organization’s approach to autism and a sign that Autism Speaks is finally starting to listen to the activists who have rejected the cure mentality for so long and called on Autism Speaks to reject it, too.

Except it’s not a sea change. It’s not a change at all. Autism Speaks hasn’t changed a damned thing except their wording.

Look at their  mission statement. The cure mindset is still front and center:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.

from: https://www.autismspeaks.org/about-us/mission

Allow me to unpack this shining new mission statement.

Autism Speaks is now promoting solutions instead of cures. Except that one of their definitions of solutions is not only synonymous with what “cure” actually meant, it is even more chilling with the new wording. But I’m getting ahead of myself; you’ll see what I mean further on in this essay.

“Cure” was code language — something called a “dog whistle” because it’s language meant to only be truly understood by certain people just as dog whistles can only be heard by certain ears.

To the general population, “cure” sounds great. When you hear the word cure, you naturally think of an alleviation of suffering. You think of a cure for cancer. You think of the cure for the common cold. You think about kind-hearted, humanitarian scientists coming up with ways to soothe the discomfort and fend off death. Who could possibly be against a cure, right? Cures are good and make people happier and healthier.

But what does a cure for autism look like?

Autism is a difference in the structure and function of the brain. All the behavioral differences you see, all the perception differences we experience are informed by differences in neurological structure and function. The brain is the seat of our individual human identities. Autism is the ownership of an autistic brain. Curing autism would mean changing our brains.

Maybe it could be done carefully and someone could cure the pain and nausea I experience when I hear certain sounds without removing the musical parts of my brain. Maybe I could be cured so that I could listen to a soprano singing without my whole body trembling in pain but would I still have been able to learn to read sheet music at age four and play Chopin sonatas on the piano and compose and record my own music? Maybe.

Maybe I could be carefully and precisely cured so that I don’t regularly lose the ability to speak. It would be nice to not have to type to communicate sometimes. People aren’t very patient when I can only communicate by typing. They talk over me, they ignore what I tell them, they ask me five more questions while I’m still typing the answer to their first question, overloading and overwhelming me. Maybe I could be cured so that I never lose speech again without removing the parts of my brain that make me a skilled writer. I am as skilled with the written word as I am because it is my first language and the spoken word is my second language. Maybe I could be cured so that I could speak all the time, reliably, without losing my writing skills. Who would I be if I weren’t a writer? It is such a deep part of my personal identity, crafting written words. Anyone who has met me, heard me present, watched my YouTube videos knows that I speak well but I write so much better than I speak. Maybe my intermittent mutism could be cured without destroying my writing. Maybe.

You can see where I am leading you, right? There really isn’t a cure for autism. Once my brain was wired this way, my life trajectory was always going to be divergent from the bulk of life trajectories around me. Once my brain was wired in an autistic configuration, a cure would mean untangling my neurons and pasting them back together differently. Curing my autism would quite literally mean giving me a different brain. Giving me a different brain would quite literally mean erasing who I am. A “cure” for a living Autistic person is impossible because once you make such major changes to a person’s brain, you haven’t cured them; you’ve removed them and replaced them with a different person who might (or might not) share their memories. If you enjoy reading science fiction, read Elizabeth Moon’s novel, The Speed of Dark, for an eerily realistic example of what a cure for autism might look like.

So now I’m hearing some people praising Autism Speaks for removing the word “cure” from their mission statement, but has anything really changed? Let’s look at their new word, “solution,” adn see why it’s much more frightening to me than “cure.”

“Autism Speaks is dedicated to promoting solutions” …. let’s enumerate those solution goals:

1. across the spectrum
2. throughout the lifespan
3. for the needs of individuals with autism
4. for their families
5. through advocacy and support
6. increasing understanding and acceptance of autism spectrum disorder
7. advancing research into causes for autism spectrum disorder and related conditions
8. advancing research into better interventions for autism spectrum disorder and related conditions

And, for comparison, here is the old mission statement:

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder.”

1. Across the Spectrum

If these words mean what are claimed, this would be a sea change worthy of advertising. I am suspicious of all the focus on the removal of the word “cure” when “across the spectrum” is a much bigger change. Why is no one talking about this?

For years, those of us Autistics who could communicate using words, whether spoken or typed, were told to sit down and shut up. Autism Speaks wasn’t talking about us, we were told. They were only talking about those ‘poor unfortunates’ who could not speak for themselves. Sure, we got counted whenever Autism Speaks wanted to share the huge numbers of millions of Autistics they needed funding to help. They wanted us to be counted as warm bodies for fund-raising purposes. They just wanted us to be silent warm bodies. Shut up, Autistics, you’re getting in the way of us helping.

If Autism Speaks is truly committed to offering solutions “across the spectrum,” they need to look at how many of us are homeless and hungry. They need to look at how many of us are slipping through the services cracks because there’s nothing out there for us. They need to look at holding universities accountable for the accommodations Autistic students need to succeed and thrive in an academic setting. There are massive unmet needs among the Autistics that Autism Speaks has traditionally told to shut up. If we really are part of their mission statement now, are they going to make good on that? Or are those just words designed to shut us up yet again. “There, we mentioned you in our mission statement. Now sit down and shut up.”

Put your money where your mouth is, Autism Speaks. And by that, I don’t mean the $1,167,786 spent on catering.1

Autism Speaks likes to make you think they are giving a lot of direct financial support to Autistic people and their families by rolling several categories together in their pie charts. They told us they spent $24 million on “family services, awareness, and advocacy”2 because that hides the specifics.

It hides the actual amount that went to family services: $4.6 million

Versus the amount that went to advertising: $52 million

It hides how much of that advertising, “awareness and advocacy” was spent on promoting programs like MSSNG that teach the world that Autistics are “missing pieces.”  Notice what they chose to leave out of the word “missing”: We Autistics are missing “I” – identity, humanity, self.

And what are the missing pieces that the MSSNG is discovering? Autism Speaks is sequencing thousands of genomes. “The best research minds in the world are going to mine this database of DNA so we can uncover and understand the various subtypes of autism. Then we can get to work developing customized treatments and therapies so we can improve the quality of life for so many people who need help.” – Liz Feld, President, Autism Speaks.3

Customized treatments and therapies? This would be great news for everyone, Autistic or not, if that’s what they’re actually doing. One-third of Autistics have epilepsy, so people with epilepsy would rejoice because those customized treatments would help them, too. As many as three-quarters of Autistics have clinically significant sleep disorders and that means the 25% of the general population with sleep disorders would rejoice because those customized treatments would help them, too. If MSSNG is really doing what it claims to be doing, the entire world should rejoice because the things we Autistics suffer with are not autism-exclusive things. Every treatment or therapy customized to our genetics will help thousands of non-autistic people who suffer those same things.

Except I’m not convinced. What are you developing, Autism Speaks? Will I be able to go get a genetic test and get targeted treatment for the digestive distress, neurological circadian rhythm sleep disorder, dyspraxia, anxiety disorder, and connective tissue disorder that are my genetic hitchhikers, the traveling companions of my autistic genetics? That would be a dream come true — not just for me, but for the millions of other people of all neurological profiles who also suffer these conditions and may share the particular genetics related to them.

I think MSSNG is more likely to be part of that “cure mentality” Autism Speaks claims it has jettisoned by changing the wording of its mission statement. I think MSSNG is a way to detect autism in the womb. I think MSSNG is a way to provide a “solution” to autism….. I think MSSNG is a way to make most future Autistic children be as missing as the estimated 80% of Down Syndrome children who are not born, thanks to genetic testing.

Prove me wrong. Fix my digestion and connective tissue and my sleep patterns that are too messed up for me to be employable. Please, do prove me wrong.

I am part of that “spectrum” you now speak of reaching across. Show me the solutions.

2. Throughout the Lifespan

This is another “I’ll believe it when I see it.” The entire world still thinks of children when they think of autism. They think it so much that we don’t ever really grow up, we become “adult children.” If Autism Speaks has a new commitment to “solutions” throughout the lifespan, let’s start seeing the word “adult” appearing more often. Alone, as a noun. Not as an adjective to modify the noun “child.” We grow up and we need help.

What are you going to do about the 10%+ of Autistic adults who end up in the penal system? what are you going to do about the 10%+ of Autistic adults who end up homeless? What are you going to do about Autistic adults who are deemed “too high functioning” to get services but “too low functioning” to be helped by Vocational Rehabilitation? What are you going to do about the Autistic adults languishing in sheltered workshops because no one cared enough to introduce supports to help them into the mainstream workforce with real wages? What are you going to do about the Autistic adults stashed away in institutions who could be living independently in the community with adequate supports?

You, Autism Speaks, are vacuuming up all the money from all the local communities, to the tune of $122 million per year and you are giving back only $4 million of that in actual services. You can change the wording of your mission statement all you want, but until you start helping the thousands of Autistic adults who are homeless, hungry, or imprisoned because there was nowhere for them to go and no services for them (because there was no money to help them, since it all ended up going to Autism Speaks) then your new mission statement is nothing but words designed to provide a louder and more elegant “sit down and shut up” to the inconvenient Autistic people who actually need the help you love to pretend you are giving them.

3. For the Needs of Individuals With Autism

Oh, yes. About our needs.

We need schools to accommodate us, from pre-school to university level. We need the supports and accommodation to attend school within the community, not segregated. We need programs that understand that our academic needs and our social needs can be on radically different levels and that both those needs must be addressed or you have failed us and, by extension, all of society.

We need to be spoken of in respectful terms, not called a tsunami or a public health crisis. Not to have our beautiful brains compared to cancer, AIDs, and diabetes. Not to be called a disease. Not to be used as inspiration porn. Not to be portrayed as the haunting menace that will destroy families, society, the economy, and all of civilization.

We need real access to healthcare, not to have our co-occurring conditions dismissed as “that’s just what autism is like” and not to be subjected to quack treatments like bleach enemas, worms, chelation. We need medical professionals who will take the time to understand our healthcare access barriers and work with us to overcome them. We need to have it understood that having spoken communication does not automatically erase our support needs and we need to have it understood that not having spoken communication does not automatically erase our intelligence and autonomy.

We need safe places to live, access to people we love, adequate healthy food to eat. We need to not be isolated from the community. We need to not have our autonomy overrun. We need help with employment for those of us who can work and we need help with financial support for those of us who cannot. All of us need support for the activities of daily living, and we need to have our support needs recognized, understood, and respected even though they can look very different from one person to the next.

And all that’s just for starters. Can you address this baseline, Autism Speaks? It’s in your mission statement now. We’re waiting.

4. For Their Families

The number one thing our families need is to see us provided for. Our families need the peace of mind that comes from knowing we will be okay when they have passed on. Our families need to see us being educated appropriately. Our families need a level of social understanding of autism that lets them not get harassed by neighbors for living with us in their homes, that lets them go shopping or to a restaurant with us without being judged as bad parents, that lets them hire a sitter to watch us for a reasonable price.

Presenting us as terrible burdens does not help our families. Calling us a public health crisis does not help our families. Encouraging traumatizing ‘therapies’ that create anxiety problems and PTSD in us does not help our families.

5. Through Advocacy and Support

Yes, what kind did you have in mind? We don’t need any more of that ‘advocacy and support’ like the “I Am Autism” video. We don’t need to be told we’re “MSSNG” (the two Is that are missing are the ones they are trying to pull the wool over.) We don’t need to be called a tsunami or called lepers or have it said that we are so pure and innocent because we don’t care about money. (I can show you an awful lot of Autistic adults who care an awful lot about money because they don’t have enough to pay the rent.)

How do you intend to advocate for us now? Is your support going to change? Are you going to spend more than the pitiful 3% of your income you currently spend on services for us and our families? Do the people who lovingly volunteer their time and resources to organize your fundraising walks realize that only three cents of every dollar they raise is actually going back to the community?

You’ve got to do much better in your advocacy and support than your track record, Autism Speaks, for anyone to take this new mission statement seriously. Where are your solutions that come through advocacy and support? What are you planning to solve?

6. Increasing Understanding and Acceptance of Autism Spectrum Disorder

This is where your alleged solutions start to sound like little more than buzzwords, Autism Speaks. You have latched on to the word “acceptance” without understanding what it means. I know you don’t understand what it means because you never would have listed this as one of your solutions if you really understood “acceptance.”

Yes, we have been calling for acceptance. We have been calling for acceptance of Autistics! You are calling for acceptance of Autism Spectrum Disorder? Seriously?

Accepting Autistics means accepting that we often look and sound and choose differently than other people but we are no less worthy of dignity and respect. Accepting Autistics means working with our patterns of strengths and struggles to help us find our way in this fast-moving and chaotic world. Accepting Autistics means making room for us at the table. We deserve to live independently in the community, with whatever supports we need to accomplish that. We deserve a chance to work, to go to school, to have a family, to shape a meaningful life — meaningful from our perspective and our needs and desires, not meaningful according to your judgment of how you think we should live.

You are calling for accepting autism spectrum disorder. What does that even mean? How does that help us? We are different and disabled but not disordered and we do not need you to accept a disorder; we need you to accept us. If you have real solutions, they will be about accepting us, not about accepting a disorder.

7. Advancing Research Into Causes for Autism Spectrum Disorder and Related Conditions

Here! Here! Here! This is it right here! This is why your new mission statement is far more terrifying than calling for a “cure.” This is why your emphasis on “solutions” is so chilling to me!

You want to study the causes of autism? You are dedicated to promoting solutions related to finding the causes of autism??? If you find out what causes autism, what solution are you planning to implement? Why do I keep hearing the word “final” every time I think about your solutions for the causes of autism? This is why I do not trust your shiny new mission statement. This is every bit as much entrenched in the cure mentality as your old mission statement. This is a piercing dog whistle for pre-natal testing and abortion.

This is why I read your new mission statement and I still see a huge organization draining all the money from local communities — money that could have helped us, our families, our schools, our vocational aspirations, our future — and using that money to research how to kill us before we are born.

This is why I say you have not changed a damned thing. You have slapped a fresh coat of paint on the same terrifying eugenics agenda you’ve always had, Autism Speaks.

You only took the word “cure” out of your mission statement. You did not remove the hatred of our existence. You might have fooled some people, but you aren’t fooling me.

8. Advancing Research Into Better Interventions for Autism Spectrum Disorder and Related Conditions

Meet the new torment; same as the old torment. Are these the better interventions that strip away our autonomy more efficiently, leaving us even more vulnerable to predators? Or is this more support for “treatment centers” that use electric shock on us? Or are these the better interventions that prevent us from being born in the first place?

No thank you, Autism Speaks. You have to do more than draft some buzzier buzzwords for me to trust you.

In fact, I think I agree with my friends who have said that the only thing you could possibly do at this point to win our trust is completely dismantle and donate all your money to other organizations that are Autistic-led and doing the real work to make our actual lives better.

Who cares what causes autism? What good can it do Autistics to learn why we exist? We are grossly under served — all of us, “across the spectrum and throughout the lifespan” are not getting what we need to thrive and you are taking the money and volunteer time that could help bridge that gap and throwing it at research designed to eradicate us.

No. You have not changed a damned thing. I still don’t trust you. I still don’t trust those who support you.

All the carefully worded mission statements in the world will not change that.

1. https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf
2. https://www.autismspeaks.org/sites/default/files/docs/annual_report_9-11.pdf
3. https://www.autismspeaks.org/science/science-news/autism-speaks-launches-mssng-groundbreaking-genome-sequencing-program

Ann Coulter: A Reprise

Content note: the R-word, bullying, threats of outing a disabled person’s identity at their work/school

Four years ago, Ann Coulter called President Obama the R-word. That was a significant event for me because it made me angry enough to change from anonymously blogging to writing openly under my name, thanks to a movement, led by blogger Jill Smo, for all of us developmentally disabled people to show our faces and let Ann Coulter know who she was hurting.

By choosing to use the R-word as an insult, thus using our disability as a bludgeon with which to beat others, Coulter showed a crass disregard for others, especially more vulnerable members of society. Coulter believes it only hurts the person she aims the R-word at, but she is wrong. It hurts all of us because hurtful words chip away at the foundation of civility and disregard for the humanity of disabled people destroys the humanity of the offender most of all.

This week, Coulter did it again, using the R-word when she tried to defend presidential candidate Donald Trump for mocking a disabled journalist. Clearly, Coulter is not reachable or teachable. But I want to re-blog my original post from October 23, 2012 anyway because it was a landmark post for me: the moment I stepped out of the shadows and came out publicly as Autistic. I was in graduate school and was being harassed and bullied by a fellow student who was threatening to tell my department about my disability. I decided to make his threats moot by coming out and I’ve never looked back since.

Until now. 🙂

So here’s my post in the original, except for the photograph of me which somehow got lost along the way. I’ve substituted in a more recent picture of me, but all the text remains as it was in the original post. Thanks for reading.

To Ann Coulter: Calling Our President the R-word Was Beyond Inappropriate
originally published by Unstrange Mind on October 23, 2012

Ann Coulter has made a name for herself by being angry, offensive, and over-the-top. She does it so often that most of us just ignore what she says. But I have to speak up about the twitter message she posted after the third presidential debate:

coulter_tweet

Ann Coulter’s offensive tweet from 2012. It reads: I highly approve of Romney’s decision to be kind and gentle to the retard.

This is wrong on so many levels! A pejorative term based on a medical label for a vulnerable and disenfranchised population is not an appropriate insult. One blogger, jillsmo of the blog Yeah. Good Times., has written a post protesting Coulter’s choice of words. Dear @AnnCoulter: This is who you insult with your words. In this entry, jillsmo asks for all disabled people who have been called “retard” to post a photo to show Ann Coulter the real faces of the people she is insulting when she uses the r-word as a pejorative.

I felt this was a perfect post to re-open my blog with. Some of you may remember the blog I kept here two years ago. I was blogging anonymously at that time and a colleague at my university began making hateful posts here and threatening to out me in my department as autistic. (Not that many people would have been terribly surprised. Despite being deeply in the closet at the time and struggling to pass as neurotypical, I’m “strange” enough that no one was fooled. They may not have figured out my exact diagnostic label, but anyone who got to know me figured out pretty quickly that there was “something up” with me.)

I was so upset by the attack and I feared so much for my position at my university and my future career that I closed down this blog.

Now I’m ready to re-open it and I’m ready to come out of the neurodiversity closet. Now is the time to post my photo and let Ann Coulter see who she hurts when she uses “retard” as an insult. She hurts me, Sparrow Rose Jones, doctoral candidate at Idaho State University:

Sparrow Rose Jones

Sparrow Rose Jones

My official diagnosis is Asperger’s Syndrome (soon to be “Autism Spectrum Disorder: Severity Level 1” when the DSM-5 comes out in May of 2013.)

I first recall being called retarded in first grade. I would slip out of my desk and crawl on the floor to the back of the room where I’d hide under the table. If I was caught, I’d begin meowing like a cat. I was reading at a high level but refused to participate in reading lessons. I did not interact normally with the other children and my teacher did everything in her power to have me removed from her classroom (and eventually succeeded.)

I may have been called retarded before that point – I certainly demonstrated severe impairments in pre-school and kindergarten. But Miss Katzman, my first grade teacher, is the first person I know of to have used the term in reference to me.

Through the years, many other people have called me “retarded” or “retard.” A few times I’ve been called “mental,” which I assume either means retarded or mentally ill. I have been at the grocery store and overheard: “see that girl over there? Is she retarded?” I have been asked to my face: “are you retarded or what?” And I had to undergo a battery of tests so my school could decide what to do with me after Miss Katzman declared me to be retarded and unsuited for her classroom.

So, Ann Coulter, this is the face of one of the many people you have insulted and deeply offended with your off-hand remark. I am sensitive, I am vulnerable, and I have a lot to offer the world if I am given the chance to do it and not stymied by the sorts of judgments that tend to come from a society that thinks words like “retard” are appropriate insults.

I stand in solidarity with everyone else who has ever had the term “retard” slung at them for any reason. We are many different sorts of people from many different walks of life with many different talents and traits of value. Every time the r-word is thrown about, all of us are devalued. All of us suffer. And all of society suffers as a reult of what is lost when we are treated like jokes, like garbage, like useless nothings suited only to be used as a comparison when one wants to say nasty things about other people.

I am proud to welcome President Obama into our ranks. No, he is not from the same vulnerable underclass as many of the rest of us who have had the r-word slung in our direction. But he has shown recently that he cares about us and wants to help us live fuller, richer lives. I welcome you, Obama, as an honorary member of our group. You are our ally. Ann Coulter has used our existence to slap you with. You, on the other hand, have listened to our difficulties and created legislation designed to support and accommodate our needs so that we can move into more fulfilling, more productive lives.

I think it is obvious, between Barack Obama and Ann Coulter, which is the one with valuable things to say and do with respect to the more vulnerable members of our society and which is the one working to maintain an oppressive status quo under which vulnerable people are little more than tools to be used for insulting others.

Coulter has done one useful thing, however. She has inspired me to come out of my disability closet. I’m here and I’m willing to be counted. And as long as there is breath in my lungs or muscles twitching in my fingers, I will use my voice and my words to speak out against stigma and injustice.

An Open Letter to Time Magazine and Joel Stein

Time Magazine Article

[image description: A screen shot of an online Time Magazine article with a highlighted sentence reading “Now the web is a sociopath with Asperger’s”]

update 8/18/2016: Time Magazine removed that sentence, either while I was writing or shortly after in a response to a flood of Twitter protests.

Waaaaaaaay down at the bottom of the article, the included the most bland apology possible: “Editor’s Note: An earlier version of this story included a reference to Asperger’s Syndrome in an inappropriate context. It has been removed.”

Just below that, it says, “This appears in the August 29, 2016 issue of TIME.”  If that means what I think it means — that the hate slur is also in the print edition, where it cannot so quickly be erased, Time Magazine owes the Autistic community a MUCH more sincere apology than has yet been offered.

update 8/20/2016: I just looked at the print version of this issue. As I suspected, the slur is there. You can see photos of it on my Facebook Page.  TIME Magazine and Joel Stein owe the Autistic community a HUGE apology for using our neurology as a slur.

Dear Time Magazine and Joel Stein,

I am Autistic. In your article published online this morning, you engage in the behavior you purport to bemoan. You have trolled me on the internet.

You see, I was already having a pretty horrible day today. It started with my usual morning activity: crunching the numbers and figuring out if I will be able to survive another month.  I have a really hard time keeping myself fed because I have multiple disabilities, including hypernychthemeral syndrome, which is like having my sleep-wake symphony conducted for an orchestra playing on Mars. No one wants to hire an Autistic who can’t stay awake, so I have been living 20 percent below the poverty threshold on government benefits while trying to build enough income through writing to support myself and my cat. We live in my van and we’ll make it another month, but only if I stop off at Salvation Army to pick up boxes of food.

Your article writes about a culture of hate online? Try living with half a dozen serious disabilities in the culture of hate that is everywhere around us. I’m talking about that culture that is always angry about “those people” who live off the government. I’m trying, I really am. But I started out behind the eight ball and it’s really hard to see my way out of poverty from back here.

So after that refreshing morning activity, I turned to this blog, writing an entry about how desperately disabled people need to be able to have emergency savings funds. We aren’t allowed to because if we have too much money, our benefits get taken away and we have no medical coverage, no place to live, nothing to eat. So we have to live on thin ice, hoping we never have an emergency or end up stuck with an abuser. In the case of Autistics, good luck on that last count. 83% of women with developmental disabilities have been sexually assaulted at least once in our lives. That’s dangerously close to all of us. And half have been assaulted more than ten times. More than ten times. Imagine that for a moment. Imagine the level of hatred a person would feel like their entire culture had leveled against people like them to allow such a travesty. That, Time Magazine and Joel Stein, that is a culture of hate.

You wonder why we’re losing the internet to a culture of hate? Have you lifted your head from your computer screen and looked around you lately? The internet is embedded in a culture of hate. It goes far beyond me and my petty problems, but let’s get back to my problems for now since you are part of them today.

After writing my blog entry about how hard it is for Autistic people to avoid getting abused by everyone who walks through our lives, given that so few of us have savings to fall back on when people start leveraging our fundamental human needs against us…not to mention those of us not allowed to have savings. Or marry. Did you realize that people on SSI lose a quarter of our income if we marry? And those of us living in group homes are often forbidden to have a romantic life at all. Our lives are carefully managed for us and too often our options are rebel and end up in a worse situation or quietly put up with what we have. Anyway, after writing about that, I took an academic survey about Autistic lives, social media, and quality of life.

That survey dropped me into a pretty deep funk. You see, there were a couple of questions that were a one-two punch to my gut:

“Please describe what the phrase “quality of life” means to you. Please also share what quality of life means for your own life.”

This question was almost too difficult to answer. All I could manage to do was define the phrase ‘quality of life’: “Quality of life is the assessment of how much or little a life is worth continuing versus committing suicide.”

That primed the pump and the next question was where the devastation really occurred: “How would you describe how autism affects your quality of life?”

Time Magazine, Joel Stein, I’m going to clean up my language for you now. This is the censored version of what those academic researchers got from me: “Autism does not affect my quality of life. The way the world treats people like me is what really messes with my quality of life. Then, as a nifty little reward for the PTSD I live with after putting up with a life of abuse for being different and predation for being extra vulnerable, the world tries to decide for itself whether I have quality of life or not. The world stops asking me and people like me if we think we have quality of life and decides people like me shouldn’t even exist. It dives deep into research on how to detect us early so we can be removed from our mothers’ wombs. Autism is fine. It is abusive jerks who refuse to understand what autism really is who are, to paraphrase Orwell, stamping on my quality of life like a jackboot smashing a human face forever.”

That is the culture of hate in which I live. It is a culture where the late Suzanne Wright of Autism Speaks was applauded for telling the Pope that we are innocents with no financial cares. She said we were like lepers and our parents were like Saint Francis, nobly taking care of us despite our affliction. She said that and I listened and I wept because I can’t afford to feed myself. I have friends who are starving, who live in housing without running water, who live with daily abuse. I have friends who have barely managed to leave facilities where they were repeatedly, painfully shocked on their skin any time they expressed a personal desire, such as wanting to leave their coat on instead of taking it off. I have friends who live in fear because their Autistic teens are large and Black and growing facial hair and that puts them in line to be the next Reginald Latson or Arnaldo Soto. Sadly, white Autistics don’t fare much better. Just ask the survivors of David Levi Dehmann or Kayden Clarke.

And here, into my not-so-awesome day in this not-so-awesome culture of hate we’re all steeped in, comes your article.

When you, Joel Stein, wrote these words and you, Time Magazine, published them, did you not get the irony of asking how the internet was turning into a culture of hate-filled trolls as you used my disability as a bludgeon? Did you not realize that you were crafting words of hate that are massively damaging to a population that already suffers hate and abuse? Did it not occur to you that your words would feed the depression of countless Autistics — myself among them — who grapple with depression, anxiety, PTSD, and a pervasive feeling that we live in a world that would rather see us dead than help us have quality of life?

Did you realize that there are studies out there that have found that youth with Asperger’s have a suicide rate 28 times higher than non-autistic peers? Did it occur to you that your words are exactly the sort of brickbats that contribute to that astronomically high rate? You are part of the problem you attempted to describe.

If you truly care about a culture of hate on the internet, you will retract your hate speech. You will apologize to Autistics and people with Asperger’s. You will do something active to make this world a better, safer, less hate-filled place for Autistic people, and you will never again deem it appropriate to use a vulnerable disabled population to make a pithy point. We are not your linguistic color; we are human beings.

 

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