Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Category: Media Representation

Book Review: The Luis Ortega Survival Club

July 23, 2023 /
The cover of the book The Luis Ortega Survival Club by Sonora Reyes. A colorful digital art image of four people facing the viewer in a high school hallway: a person with white skin, a purple shirt and green hair; a person with brown skin, a red shirt, and black hair; a person with black skin, a pink shirt and black hair; and a person with black skin, a yellow shirt and black hair with a pink watchcap.

The Luis Ortega Survival Club by Sonora Reyes,
Balzer + Bray, 2023.

Content note: sexual assault; exploitation of the vulnerabilities of women, autistic people, and people of color; victims being unheard.

The Luis Ortega Survival Club is a serious and important novel that is also a compelling read with moments of humor and joy appropriately mixed in. It is marketed as a YA novel and I am reviewing it as a 56-year-old Autistic adult. It is a novel almost entirely about women of color (I noticed only one white character in the story) and I am a white, transmasculine, non-binary person. So I will start by apologizing for my inevitable oversights as a person outside the demographics of the novel and its intended readers.

As a writer and an Autistic reviewer, I read fiction on multiple levels and I will review this novel the same way. This review will address the questions: Is The Luis Ortega Survival Club a good novel? Is the Autistic character good representation? Is this novel politically and/or socially important?

This is a very well-written novel. The plotting is tight and the twists the story took were not predictable. I found myself 3/4 of the way through this novel, still feeling anxious: would the villain get what was coming to him? It really wasn’t clear if, or even how, the novel could have a satisfying ending because Reyes kept the story moving and turning throughout. Yes, the ending was satisfying! (No spoilers!) It tied all the story threads together and there was enough foreshadowing for the ending to make sense and not feel like it came out of nowhere.

There were only two spots where I felt pulled out of the story for a moment: one was when the protagonist used the more medical sounding phrase “self stimulatory behavior” before shortening it to the more common “stim”. It pulled me out of the story because it didn’t feel as accurate to how autistic people tend to talk about stimming. If the full medical term gets used, it happens second, in the explanation of what a “stim” is.

The other spot where my head was pulled out of the story is during a serious conversation between Ariana and her parents. It was a great conversation, it just felt too “easy” for me. (This could be a generational thing. My parents were members of the “Silent Generation” but Ariana’s parents are more likely “Generation X” or even older members of the “Millennial” generation.) I can’t say more about that conversation, because it would require spoilers, but I will say that even though I couldn’t relate to parents sharing with their teen child on such a deep level, I was still emotionally moved and I found the content of the conversation believable.

Other than those two, minor moments, the book COMPLETELY captivated me, pulling me in and through a story that felt very real. In some places, a little bit too real, considering the subject matter. I survived my own “Luis Ortega” so this story was personally affecting for me in that respect.

Luis Ortega is a predatorial high school boy. He targets high school girls and non-binary students assigned female for sexual encounters that range from highly pressured (which is to say, non-consensual) to outright r*pe. The novel opens with Ariana struggling to cope with the aftermath of her own encounter with Luis Ortega. Reyes writes this difficult story with great sensitivity: we know what Luis did but we never have to watch him in action. The novel is intense enough as it is. Showing the assaults in any kind of detail might have made the book too emotionally gutting to read. Reyes writes the topic of teen sexual assault with a delicate touch, deft, and professional. Is this book triggering? Oh, yes. Is it manageable? Also yes.

Ariana is a bisexual Latinx teen girl with situational mutism. She has no formal diagnosis but has identified herself as Autistic. This fact alone is realistic and politically important: as a girl and as a person of color, a formal autism diagnosis is much less accessible to her. Sonora Reyes, the author, has disclosed their own autism online (when I searched to see if Reyes were Autistic, I was delighted to find their disclosure on Twitter as part of a terrific thread about why Reyes identifies Zuko, from Avatar the Last Airbender, as Autistic.)

The beginning of a Twitter thread by Reyes about Zuko and autism

Ariana is a classic “unreliable narrator”: from the beginning, we, the readers, are far more angry and outraged than Ariana, who seems more confused and hurt than anything. Throughout the story, Ariana very believably misjudges others, thinking people are friends who clearly aren’t Ariana’s friends, while feeling unsure about people who clearly are her friends. I felt like this made me root more strongly for Ariana to find her way through the emotional and social maze she was stuck in.

Ariana is a strong character with a lot of personal power waiting for her to discover and tap into. The friend circle she develops as the story progresses is filled with equally strong characters I felt invested in. I wholeheartedly recommend The Luis Ortega Survival Club as a novel you won’t want to put down.

I am overjoyed by the autistic representation in this novel. Ariana is believable as an autistic young woman who has managed to fall through enough cracks to be in regular education, making above average grades, and not speaking at school. Because she wasn’t a behavior problem and her grades were exceptional, Ariana could have just gotten passed along through a system where it was clear that an evaluation might find “something” but no one put in the extra work to get her an evaluation because she was doing the work and doing it well. An evaluation would have cost more money, more time, more resources. Her quiet focus on schoolwork meant the system could leave her alone and focus its spotlight on other students who were causing problems or failing academically.

As narrator, Ariana was able to normalize her autistic traits for the reader. Showing us the contents of her mind on every page helps the reader to associate her articulate thoughts with her silent presentation, giving us the unwritten message that we should not judge the depth of another’s mind by the loudness of their speech. The combination of deep insight and social naiveté Ariana demonstrates reminds the reader not to judge people’s understanding based on one realm: someone can be both insightful and naive at the same time (and we Autistic folks often are). Ariana is an example of why concepts like functioning levels and IQ are pointless (and often harmful) pigeonholing of complex human beings.

Politically, The Luis Ortega Survival Club is an important novel, both for autistic representation and for bringing more awareness to the #metoo movement and how necessary it is to keep that movement alive. Reyes’ novel shows us what predatory assault looks like in one setting — a high school — and shows the traumatic effects one person can have on a community. Reyes even brings generational experiences of trauma into the story, making it clear how important it is for all of us to prevent and address assault. Reyes’ story shows how sexual assault affects far more than the individual victims of the assault. Trauma has ripples that touch every single person in a community. No one is left untouched and Reyes’ novel is important for showing that fact without preaching or spoon feeding readers.

The Luis Ortega Survival Club shows a mostly non-speaking autistic character taking charge of her life and acting with agency and autonomy. This novel is not fairy-tale autism like some representations I’ve seen on television. Ariana does not have “autistic super powers” and she isn’t doing anything that leaves the reader shaking their head and thinking “this could never happen in the real world.” Ariana, her thoughts, her choices, her actions, the effects of her actions — all of it is believable and real and very possible in the world outside the novel. That is politically powerful storytelling that has the potential to shift how readers view autism and Autistic people.

Finally, this novel is politically important because it centers Latinx people and culture. Many people from others cultures will read The Luis Ortega Survival Club and learn more about life in Latinx families. As a white reader, I was grateful to learn more about the food and feelings, celebrations and beliefs of the characters.

I grew up in an era where most of the stories available for me to read were about abled, cishet, white people. People of color either didn’t exist, or were minor characters, often servants or slaves. Disabled people were plot devices and objects of pity. Queer people were too scandalous to mention. Growing up with those sorts of novels led me to have skewed, unhealthy ideas of what the world was really like.

I am grateful for novels that center people who are different from me so I can continue to work on opening my worldview. I am grateful that Latinx teens and Queer teens have novels to read about people like them. (I wish I’d had novels with Queer characters to read as an isolated and alienated Queer teen!) I am grateful that the generations coming up are reading novels filled with Queer, BIPOC, Disabled characters. Novels that normalize the diversity of the real world are politically important and The Luis Ortega Survival Club is terrific in that aspect.

I recommend this book as a great read, great autistic representation, and a politically important read. Not only is it a wonderful YA coming of age novel, but it’s a story that readers of all ages can enjoy (if I may use such a pleasant word for a story with such troubling elements) and learn from. The subject matter is difficult, but the treatment is welcoming toward the reader, helping us read about trauma without feeling weighted down or hopeless. This is a positive and empowering novel and I’m glad I read it. I hope you will read it, too.

A is for Autism Acceptance

April 5, 2017 /

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

February 2, 2017 /

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

October 15, 2016 /

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, and for all those that just read the word porn and thought what the heck, inspiration porn is nothing like actual porn like Tanya Tate doing anal at sites like https://www.tubev.sex/?hl=ja, porn is now used as a word for lots of pictures of something i.e. food porn which is lots of pics of food. Not to be portrayed as the haunting menace that will destroy families, society, the economy, and all of civilization. Just as how people view an escort hamburg has as a negative thing (which has its own issues), this viewpoint must be changed as a whole. In the same way, masturbation should be normalized as a whole. Whether by using sex dolls or without. The taboos surrounding this whole topic should be dissolved because masturbation can be a means of self-pleasure for those suffering from depression. In addition, people need to stop being judgmental about other choices. For example, one should not be judged for going through a sex doll review so they can get a better idea before purchasing one.

Also, 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

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