Autistic Author, Artist, Advocate, and Speaker

Tag: inclusion

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. However, nowadays people may have been showing eagerness and are trying to be sensitive towards the topic. Additionally, there are health firms like NovelBiome and others similar to them that are committed to help families of kids affected with autism.

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.]

Neurodiversity: Creativity and Innovation Thrive When We Welcome Diverse Minds

Sparrow Rose Jones

[image description: Sparrow Rose Jones at the podium. A smiling white transmasculine person with metal-frame glasses, short dark hair, a dark red button-down long-sleeved shirt, jeans, and a black belt with silver buckle. Photo credit: Dr. Evelyn Chiang]

This presentation was delivered at the University of North Carolina’s Fourth Annual Disability is Diversity Week celebration, on Wednesday, November 9th, 2016 in Asheville, North Carolina

content warning: mention of suicide


Thank you for having me here this week to share in your celebration of disability as diversity. I travel all over the country and I have quickly grown to love Asheville and this university for setting such a shining example to the rest of the country when it comes to opportunities for Autistic people and their families.

Let me start by telling you a little bit about myself and why I am talking to you today about neurodiversity, the diversity of human minds, and the crucial role universities play in fostering and supporting diverse minds both in academia and in the world at large. I’m Autistic. In a perfect world, my telling you that would not be much different from my telling you that I’m white, 49 years old, a musician, or a nature-lover. It’s a fact about who I am.

Being Autistic means that my nervous system, including my brain, is wired differently. Some of my senses, like hearing, are tuned so high that the world can be a painful place for me. Other senses, such as my proprioceptive sense — that is, my sense of where my body is located — are tuned so low that I have to move around a lot to feel comfortable. That’s just one small sample of the ways that my body and mind respond to the environment differently. My nervous system has a wide variety of interesting twists and turns and some of those twists can vary from day to day or even moment to moment. Each Autistic person has their own interesting nervous system and that’s why we can be so different from one another in so many ways yet all be Autistic.

As a child, I had a lot of difficulty with school. I wasn’t getting adequate support and so I tended to be disruptive in class, trying to get the sensory input I needed for those senses that were turned on low and trying to escape the sensory inputs that were too intense for me to handle. Any of you who have worked with Autistic children know what kind of challenges I was up against, not to mention the challenge I presented to my teachers. Those were less enlightened times and it can fairly be said that I got an education in spite of school rather than because of it.

We still have a long way to go, but our understanding of autism has evolved and more and more Autistic children are getting good educations as they grow into Autistic teens. There are even programs being set up to help the parents of babies with special needs, like the Babies Can’t Wait Program, which offer support and guidance on how to handle caring for and raising them. More and more Autistic young adults are graduating high school and seeking a university education.

Everyone deserves to have the chance to have a university education, regardless of whether they have a disability or not. And now this is possible, and we only have the high schools and universities to thank for this. A university graduate can help to put them in good stead when it comes to pursuing the career of their dreams. Once the Autistic teens have completed their degree, they can recruit somewhere like this resume writing illinois service to help produce a high-quality resume to kickstart their job search and career. You see, there are only advantages to see from this. This is a terrific turn of events and universities are scrambling to set supports in place to help neurodivergent students succeed in college.

Neurodivergent? Some of you will be very familiar with that word while others have never heard the word before and are figuring it out through context. Neurodivergent is just what it sounds like: some people, like me, have minds that diverge from the mainstream. We are neurodivergent. You might have heard the word neurotypical used to describe people who aren’t autistic? Today I want to talk about the importance of supporting neurodivergent students — all those students who are not neurotypical.

Although I am Autistic and autism is the neurodivergence with which I am the most familiar, both because I have lived Autistic for 49 years but also because I have hundreds of friends all over the world who are also Autistic, autism is not the only neurodivergent neurotype.

All these neuro- words! The root of these words is Neurodiversity, the main word in the title of my presentation today — Neurodiversity: Creativity and Innovation Thrive When We Welcome Diverse Minds. I want to unpack that word a little bit because understanding what neurodiversity is (and is not) will help you understand why it is, or should be, such an important part of the university mandate.

There are three different but interconnected things I can mean when I use the word neurodiversity:

First, neurodiversity is simply a biological fact. We all have brains and all our brains have variations. We might use a word like “neurotypical” or talk about “the neuromajority” or even say things about “the average brain” or “a normal brain” but hopefully most of you realize that there is no such thing. Everyone’s brain is different from everyone else’s brain in ways both subtle and significant. Those of us who are identified as neurodivergent have more significant variation from the majority, but all brains differ and thus the word “neurodiversity” is a word that describes every one of us.

This is neurodiversity as a simple, undeniable, scientific fact. All of nature supports diversity and we have noticed that our natural environment thrives best when we work to preserve biodiversity. The world of ideas is not dissimilar from nature and universities have fostered a spirit of fearless inquiry and seek to create a sanctuary for human knowledge and wisdom. More on this notion of intellectual diversity and its intersection with neurological diversity shortly.

A second meaning of the word is found in the phrase “the neurodiversity paradigm.” The neurodiversity paradigm is a philosophical approach to the biological fact of neurodiversity. The neurodiversity paradigm holds that neurodiversity is not only a natural trait of human existence but that this diversity of minds is a valuable attribute of our species. The neurodiversity paradigm maintains that it is wrong to value one type of brain above another because each has its particular benefits and contributions. Just as we would rightfully cringe at the thought of determining which gender, religion (or lack thereof), or ethnicity is the best, the neurodiversity paradigm instructs us to stop playing favorites with brain types and seek instead to foster all that is great about every brain and every human being in whom those brains dwell and for whom those brains and their larger nervous systems serve as the seat of thought, feeling, will, perception, and identity.

A third meaning of the word neurodiversity is political: “the neurodiversity movement.” The neurodiversity movement, which was born in the Autistic community but exists to serve and support all neurologies — particularly those of fellow neurodivergents such as people with ADHD (many of whom have chosen to identify as Kinetics to escape a pathologizing label), dyslexia, anxiety, bipolar, schizophrenia, and more — is a political movement seeking justice and equality for all those “differently-brained” people in every sphere of society, including the university.

So neurodiversity is a biological reality, a philosophy about that reality, and a political movement informed by that philosophy.

Now back to the mandate of the university and why I posit that upholding the neurodiversity paradigm – the philosophy that all brain types are valuable – is, or should be, part of that mandate.

Over 160 years ago, John Henry Newman wrote a book many still value today for the way he explained and defined the concept of a liberal education, “The Idea of a University.” In that book, Newman explains why it is important for a university to offer areas of study that still garner criticism today, such as the humanities.

“it is a great point,” he wrote, “to enlarge the range of studies which a University professes, even for the sake of the students; and, though they cannot pursue every subject which is open to them, they will be the gainers by living among those and under those who represent the whole circle. This I conceive to be the advantage of a seat of universal learning, considered as a place of education. An assemblage of learned men, zealous for their own sciences, and rivals of each other, are brought, by familiar intercourse and for the sake of intellectual peace, to adjust together the claims and relations of their respective subjects of investigation. They learn to respect, to consult, to aid each other. Thus is created a pure and clear atmosphere of thought, which the student also breathes, though in his own case he only pursues a few sciences out of the multitude.”

What Newman is describing could be called academic diversity or intellectual diversity and you will be hard-pressed to find academic faculty who believe a university should narrow its range and exclude wide swaths of intellectual disciplines from the educational menu offered to students and, by extension, to the world at large. At one time or another nearly every discipline universities embrace has been threatened with extinction by legislative budget cuts coming from outsiders unable to recognize the immense value that comes from art history, philosophy, musical performance, political science, theoretical mathematics, foreign languages, even English. Economic pressures and political forces focused more on everyday pragmatism than on the sort of creativity and innovation that fires the human spirit to ever higher achievements seek always to convert universities from temples of knowledge to cookie-cutter vocational pathways.

Universities resist this attempted narrowing of the collective mind every day. Yet what of the narrow range of the types of minds welcome to engage in this Great Conversation of universal learning?

Not only is there a place in academia for a wide range of minds, including those which diverge from the dominant majority of neurotypes, but the university needs neurological diversity in order to thrive and grow.

All great thought and innovation has benefitted from diversity of one form or another. African-American minds brought us the blood bank (Charles Drew), open-heart surgery (Dr. Daniel Hale Williams), an understanding of bioluminescence (Emmett Chapelle), the traffic signal (Garrett Morgan), the gas mask (Garrett Morgan), the synthesis of medicinal drugs from plants (Percy Lavon Julian), not to mention the literature of Maya Angelou, James Baldwin, Octavia Butler, W.E.B. DuBois, Ralph Ellison, Langston Hughes, Malcolm X, and so many more.

Given that blood banks are required whenever there is a loss of blood, whether due to an accident or an operation, we must recognize Charles Drew’s accomplishments. Since then, several other inventions have been done, for instance, the development of medical refrigerators and freezers that allow vaccines, blood, and other materials to be transported.

We celebrate the accomplishments of so many brilliant minds of people from various sexual and gender minorities such as Alan Turing, John Maynard Keynes, Margaret Mead, Florence Nightingale, Oscar Wilde, Willa Cather, Emily Dickinson, Eleanor Roosevelt, Leonard da Vinci.

Accomplished and brilliant women are far too numerous to name, but a few of my favorites include Emmy Noether, who developed much of the mathematical modelling of Einstein’s theory of relativity, Rosalind Franklin, whose x-ray photograph of DNA revealed its helical structure to Crick and Watson, Jocelyn Bell Burnell, who discovered pulsars, Chien-Shiung Wu, who disproved a law in physics, the law of parity, that had been believed for thirty years prior to her work, Nettie Stevens, who discovered X and Y chromosomes.

I’m sure most of you are familiar with the Autistic agricultural scientist, Temple Grandin, and realize that it was her innovative work that is revolutionizing the cattle slaughter industry, making it simultaneously more efficient and more humane.

There are so many more great neurodivergent thinkers: John Nash won a Nobel prize for his work with game theory. Vernon L. Smith won a nobel prize for his work in experimental economics. Michelle Dawson has conducted great work studying cognition and perception in autism. Charles Dickens wrote classics of literature still lauded over 100 years later. Franz Liszt, Vincent Van Gogh, Scott Joplin, J.D. Salinger, Kurt Godel, Max Weber, Sylvia Plath, William Styron, Georg Cantor, Robert Pirsig, Jean-Jacques Rousseau, Joseph Pulitzer, Charlotte Perkins Gilman

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