Activism Through Art – What Autism Acceptance Means to Us

by Nicole Nicholson and Virgil S. Maday
Editors of Barking Sycamores

In the past, autism awareness efforts have at best promoted this kind of false tolerance and at worst have promoted outright lies that we are pathetic, helpless, unfeeling people or at worst tragic mistakes of nature or genetics. So, what good is awareness when it consists of fallacies, half-truths, and dangerous stereotypes? This is why the focus must shift from awareness to acceptance. During Autism Acceptance Month we at Barking Sycamores (http://barkingsycamores.wordpress.com) – a new literary journal created to showcase neurodivergent poetic voices – offer our own thoughts on what acceptance means.

First, let’s tell you a little about us. We are Nicole Nicholson, an autistic poet and Editor-in-Chief, and Virgil S. Maday, a musician and Assistant Editor-in-Chief. After her diagnosis with Asperger Syndrome in 2010, Nicole began trying to understand and explore herself as an autistic person through writing poetry. Throughout this journey, Nicole has met other autistic artists with incredible talent producing works of stunning beauty. Later, Virgil discovered that he, too, is autistic. And during our conversations about art and neurodiversity, we realized that without neurodivergent artists – profoundly creative individuals such as Wolfgang Amadeus Mozart, Vincent Van Gogh, Paul Robeson, Kurt Cobain, Emily Dickinson, and Hans Christian Andersen – the world would be a colorless and empty place.

We also realized that one of the best tools for activism is art – promoting understanding of autism and neurodiversity as a whole through artistic communication which opens doors to allow others to see our humanity. We were inspired by organizations such as Awe In Autism, The Art of Autism, and the Artists and Autism Facebook group, who were already showcasing autistic artists. Acceptance and understanding of neurodiversity through poetry was one of the prime reasons why Barking Sycamores was founded. It is in this spirit that we offer our views on what autism acceptance, and more broadly, neurodivergent acceptance, means to us.

1. Acceptance means that a neurodivergent artist’s voice arises unfettered, free of self-doubt or constraints placed upon the artist by other people.

2. Acceptance means that our artistic communication is not dismissed as savant ability, a fluke, or merely existing in a liminal space between genius and madness without any attempt to understand the message within the art. The lens through which neurodivergent artists are viewed must shift – instead of a call for us to change, points of view about us must change. No more Rain Men, no more assumptions that we are all like Dr. Temple Grandin, no more stereotypes of reclusive kooks or tormented, explosive creative geniuses. We are human beings with the gift to hold fire in our bosoms and turn it into whatever art it is destined to be – beautiful, raw, ugly, idiosyncratic, placid, detail-oriented, angry, or imbued with millions of colors.

3. Acceptance means we are not asked to dim our inner lights by changing behavior that is native to us as neurodivergent people. “Normal” is a lie – it is a social construct that creates an illusion of a majority population to which most belong and a minority population of outsiders who do not belong. When we as neurodivergents are pressured to conform through any means – peer pressure and bullying; behavioral modification methods which attempt to “wipe out” autistic behavior; psychology, psychiatry, and medicine which looks at us through a lens of pathology while ignoring the most important tenet of the Hippocratic Corpus – “first, do no harm”; dangerous and painful “treatments” and “cures” – we experience a similar reality to the Africans who lost their language, culture, and religion during the slave trade or First Peoples children attending “Indian Schools” in the nineteenth century who were threatened with punishment for speaking their native tongues or practicing their original faith.

4. Acceptance also means that neurodivergent traits are not discouraged, denigrated, or trained out of ordinary folks but yet tolerated or even praised in the rich and famous. Nicole used to hear an axiom in her late teens and early twenties – “he/she is rich enough to be that weird”. This is a lie. It doesn’t matter whether you’re Pharrell Williams or Tyrone Q. Public, Susan Boyle or Jane Doe, Jim Morrison or Mr. Jones. Social-economic status, race, gender, sexual orientation, and the like are neither reasons to excuse our perceived “eccentricity” nor reasons to insist that we conform to some kind of false “normal”.

Make no mistake, friends – acceptance is not tolerance. Tolerance, too, is a lie. Our modern connotation of the word “tolerance” often suggests – with a wink and a nudge – that “niceness” should be practiced to a neurodivergent’s face but yet bigotry is allowed behind their backs. This does no one any good, least of all neurodivergent people. Many of us desire open portals through which dialogue and education can occur to bring about the eventual goals of acceptance and understanding.

Virgil frequently likes to say the following: “Never allow someone outside your person to determine who you are”. We are rising up as an autistic community – and slowly, in a broader sense, a neurodivergent community – to accomplish just that. In the process, we must continue to challenge the havoc wreaked by “awareness”: stereotypes, assumptions, and demands for our conformity. We assert that we have the right to be our full-spectrum, neurodiverse selves – whether we be folks with computer minds, firework souls, and glass shatter hearts…or perhaps we exist in subtler shades of cinereal, seafoam, and cloudburst and we feel something inside ourselves closer to little sparklers or the pop and crackle of a stylus upon a vinyl record…or we find that we are somewhere in between.

To help be part of the solution, Barking Sycamores is dedicated to showcasing neurodivergent poetic voices. We invite you to “taste and see” as one of our favorite Bible verses puts it. Come read our first – and future – issues. We also invite you to send us your poetry, artwork, or essays about neurodivergence and poetics.

We are a little journal with high hopes, desiring to accomplish activism through artistic expression – one of the highest forms of communication. God willing, we will see a future in which our progeny will look back on this time in human history and laugh at the notion that there was anything unusual about neurodivergent artistic communication. But this cannot happen without acceptance – a full acceptance of our personhood and humanity.

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Acceptance and Defining Oneself

by Meg Evans

It’s in our nature as a storytelling species to filter our experiences through the narratives we create to explain them.  As humans, we go through life full of self-talk, whether or not we do it consciously.  When we plan an event we know will likely be stressful, such as traveling to a place we’ve never seen before, we rehearse it in our minds and tell ourselves why it will be okay.

Our culture goes through much the same process of creating new stories to explain advances in technology, changes to our traditional social structures, and greater diversity in our communities.  Having to deal with so many unexpected changes can make us very anxious, just because life feels so unpredictable.  We need simple, calming explanations that fit reasonably well within our existing mental maps and leave us confident of being able to manage the changes.

Now that we’re a half-century into the modern civil rights era, our culture has mostly gotten used to the idea that we shouldn’t expect everyone in our communities to look and behave exactly the same.  Although we still have much work to do on clearing away old prejudices, our society has made much progress toward the goal of accepting diversity.

But many of us find it harder to accept ourselves for what we are.  Mass-market advertising preys on our insecurities by suggesting that we won’t have any friends unless we wear the latest trendy fashion or drink the right brand of beer.  Whatever our physical traits may be, there are cosmetic products or treatments aimed at improving them, along with ads that proclaim how embarrassing it is to look like our natural selves.  If we don’t fit in with some clique at school or in the workplace, we could get bullied for being “weird.”

It’s not always easy to recognize such manipulation and bullying for what they really are.  Often we blame ourselves, thinking that we’d have more friends and get along better if only we could be more like other people.  Then we blame ourselves again for not doing a better job of dealing with our gloomy feelings and our anxiety.  We don’t take enough time to consider all the factors involved.

Defining one’s personal identity and finding self-acceptance can be even trickier in the context of disabilities, mainly because our culture hasn’t yet fully accepted them as part of human diversity.  Instead, our culture has created narratives about normality and what might happen to anyone who doesn’t fit neatly within its boundaries.  As a result, anything outside those boundaries—wherever they may be at any particular time—can be hard to accept as part of one’s own identity.

Well-meaning people sometimes offer advice along the lines of “accept the condition, but don’t let it define you.”  Such advice generally means not letting one’s potential be limited by low expectations.  As with person-first language, the aim is to put less emphasis on the condition, in hopes of avoiding the negativity often associated with it.  Put more simply, this advice is: Don’t settle for being defined by all the bad stuff our culture says.

Some may see this as acceptance—but it has the drawback of leaving all that bad stuff out there, unchallenged.  And when we don’t actively challenge prejudices, we often end up internalizing them.  That is why pride campaigns work toward reclaiming words and asserting control over their definitions.  Whether we’re talking about disabilities or any other human characteristics, leading an authentic life requires acknowledging their place in defining our identity.  We can’t truly accept ourselves as long as there is something we keep tucked away at the back of the closet, never mentioned above a whisper.

When we put acceptance into action we’re telling new stories, both to ourselves and to the world.  We’re creating new definitions that embrace all of who we are, rather than just the parts that fit someone else’s idea of who we should be.  This is how our culture grows and evolves.  Seen in this light, the telling of authentic narratives is a gift to the world, broadening its boundaries and strengthening its diversity.  No one should ever have to feel afraid or ashamed to speak a personal truth.

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Autism Acceptance: A Parental Perspective

For me, Autism Acceptance isn’t a single act.

But 1,000 acts of love, carried out every single day, in effort to improve my child’s quality of life.

Autism Acceptance is being flexible.
Sometimes it is cleaning up after a messy sensory exploration.  Other times it is happily waiting outside a busy museum with her watching her investigate various surfaces—while the rest of my family explores inside.

Autism Acceptance isn’t being overly permissive.  It isn’t allowing my child’s education or development stagnate.
For me, that has meant acknowledging that I have mistakenly failed to give her access to a functional language by insisting that she learn to speak…instead of giving her access to AAC so that she can communicate in the way that she is capable.  It is fighting for her to have access to a challenging and appropriate education which reflects the presumption of her competence.

Autism Acceptance is not forcing my child to conform to social norms. 
I will flap in joy with her no matter where we are.  I will glare in defiance at any person who dares to cast disapproving eyes on her.
Autism Acceptance is understanding that my child has very specific interests.
I will always present opportunities to engage in new activities.  When she declines in favor of swimming every day or watching the same Sesame Street, I don’t fret.  I smile.  It means that I  do not label her passions “obsessions.”  Instead, I encourage her to explore her special interests with enthusiasm and understanding.

Autism Acceptance is a struggle.
NOT a struggle against my child.
But a struggle to remember that what makes my child feel good is not the same as what makes me feel good.  A struggle to remember that it is not my job to desensitize her or immerse her in that which she cannot cope.
A struggle against those that insist that she must conform.
A struggle to keep my mind open—to continue to question the things that I think I know.
A struggle to balance my innate desire to protect my child with giving her the freedom she needs to learn and grow.

Autism Acceptance is infuriating.
Having to repeatedly insist that my child is a human being.  That she has the right to autonomy.  That she must be respected.  Pointing out, over and over, the ways which her basic human rights are being violated.

Autism Acceptance is being prepared.
For me that means never running out of yogurt.  Always being prepared to leave overwhelming situations.  Having an understanding of what she entitled to by law and being prepared to demand that the law is obeyed.

Autism Acceptance is loving parenting.
Remembering that the only thing I want for my child is happiness and that it is my privilege to help her get there.
Knowing that this is the child that I want and love.  And that a non-Autistic version of her is not only not possible—but not wanted.

Autism Acceptance in 2014

Another year

We’re back! While autism acceptance is always best practice, April is a month set aside for educating people about autism, autistic people, and a world wide enough for all of us. We’ve got some great stuff in store this year!

Expanded resources

For 2014, we have dramatically expanded the resources we offer! We’ve reformatted and expanded our factsheets, and added new links to other organizations providing practical support and insight. As in previous years, those resources are sorted by who might need them; we have customized resource pages for self-advocates, parents, educators, and people who are new to autism and autism acceptance. This year we also have a resource section started for employers looking to hire people with autism, as well as a 101 glossary of commonly used terms in our materials. Finally, we are maintaining a page which highlights links to community-driven autism acceptance-related content all across the web.

New PSAs?

Autism Acceptance Day is April 2nd, but Autism Acceptance Month lasts for 28 more days. In the following weeks, keep an eye on our Listen Up! PSA page–we might have a surprise for you in store.

What Does Autism Acceptance Look Like?

We want YOU!

We are looking for first-person and family perspectives on autism and autism acceptance to include in our “What Is Autism” section. We are looking for brief descriptions of what autism is like from the perspective of autistic people of all ages, and brief discussions from autistic people or their families about what autism acceptance looks like in action day-to-day and why it is important.

We have posed two questions to get people started:

“What does autism acceptance mean to me?”

and

“What does autism acceptance look like?”

Answer can be written (500 words or less), images, or video (5 minutes or less, in .MOV, .MPEG4, .AVI, .WMV, .MPEGPS, .FLV, 3GPP, or WebM format.) Answers should be sent to acceptance@autisticadvocacy.org, and will be posted on the Autism Acceptance Month website and shared via social media.

We look forward to hearing from you!

#AutismAcceptance

Throughout April, we’ll be using the hashtag #AutismAcceptance to promote positive, respectful, and accurate information about autism, encourage accepting and inclusive perspectives, share resources and Autism Acceptance Month-related content, and celebrate autistic people. We encourage you to join us! Share our resources and PSAs, check back in frequently, submit your own answers to “what does autism acceptance look like,” and make #AutismAcceptance go viral. We can change the conversation, one tweet, Facebook post, and story at a time.

 

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Awareness vs Acceptance: Do Words Matter?

by Sharon daVanport

Words, words, words.

Words express. Words set tone. Words reveal.

Compare two different examples in how parents of newly diagnosed children are first introduced to autism, and how these introductions serve to stage the way parents approach their child’s neurology.

“We’re sorry to tell you that your child has autism. Tragically, there is no cure. Unfortunately, your life will never be the same. Your marriage will never be the same. Expect your marriage to fail. We are sorry that your child has been stolen, but we are happy to put you in touch with organizations that will help you to become more aware of autism statistics and scientific research. In turn, these organizations will be happy to provide you with the tools for you to raise money for them so they can continue their search for the causes and cure of autism.”

“Your child is Autistic. Their neurology allows them to uniquely perceive their environment and communications. The world has yet to catch up with neurological diversities like autism, and unfortunately this creates the challenges your child will encounter. We are happy to put you in touch with organizations who can guide you toward understanding your child by hearing from Autistic people themselves. Their firsthand knowledge of what it’s like to be a person on the spectrum, as well as professional resources advocating for the importance of accepting your child’s differences, will help ensure your child’s all around success and happiness.”

Words, words, words.

Words evoke. Words lay bare. Words define.

As an Autistic woman, I find April and all the awareness hype in the autism community to be exhausting, painful and redundant. As a parent to a young adult with multiple disabilities, I challenge the destructive messages that cure-based awareness campaigns promote. These types of campaigns play upon the worst possible fears of parents. In turn, parents leap desperately towards tragedy-based medical-models of disability. And I understand this all too well, as I too was one of those parents after my child was diagnosed 15 years ago.

“It’s time for social skills. It’s time to learn how to blend in with your peers at school. It’s time…”

Those were my words, to my child, every week, for too many years.
Yet, no matter how many times I repeated those weekly words to my child, something felt awkward; something felt wrong – wrong in more ways than I have words to explain.

“I want to be a good parent, a responsible parent. I want the best for my child. And don’t the professionals know what’s best?”

Then, one day it happened. After too many words, for too many years, my child spoke up: “I’m not going to social skills anymore, mom. I hate it. I don’t want to be like everyone else.”

I froze. I smiled. Something felt right.

I still don’t know why or where the following words came from, but without hesitation, I turned to my child and asked, “What do you think about cures? Do you want to be cured?”

“Cured? No, mom. Why do people try to cure what they don’t understand? I don’t want to be cured; I want to be accepted for who I am.”

Words divulge. Words acknowledge. Words can heal.

And so began the unbridled acceptance of my child, and the acceptance of myself.

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Autism Acceptance Month is coming to a close. Thank you for your support!

Thank you so much for your support in making this an incredible Autism Acceptance Month! As April comes to a close, we at ASAN are profoundly grateful and impressed by how much backing Autism Acceptance Month has garnered from the public and from our supporters. It’s time for us to thank you for all we’ve achieved together this April, and also to look forward to the future.

This month, the Autism Acceptance Month web site has received tens of thousands of page hits. Our pledge has more than 700 signatures, 13 other organizations we approached have signed on as supporters of Autism Acceptance  (you can check them out on our Sponsors page!), ThinkGeek released three new T-shirts promoting neurodiversity and generously donated 100% of the proceeds to us, and we’ve published over a dozen guest blog posts by self-advocates and allies about what acceptance means to them personally. Similarly, our What Is Autism? page recently included a Personal Experiences sub-section, which hosts an additional set of short essays.

Our hosted events – numerous film screenings, a sensory friendly concert, the last Day of Mourning vigil, a video game tournament, an open mic Celebration of Autism, and an “Ask Me About” hosted by autistic adults – were all great successes! We at ASAN’s national branch in DC were delighted to meet our supporters during our two film screenings at the National Youth Transitions Center, and to receive reports from across the USA about other events hosted by national branches and by our supporters. We couldn’t have asked for more.

The real body of our work this month, though, has been our Resources page. We created it to be a compendium of articles, essays and information across the Internet gently introducing people to the concept of autism, as well as for Autistic self-advocatesparents of Autistic adults and children, and educators of Autistic people. The Resources page is where we listed our Autism Acceptance Month ebook when it came out: And Straight On Till Morning, a collection of essays by Autistic writers on awareness and acceptance. And, last week, we also added dozens of PDF fact sheets to each subsection, written by us and by our friends at MCIE, in the hopes that they can become a reference to people wanting to learn – or teach – about autism and being Autistic.

Finally, we’ve released our Listen UpPSA campaign for Autism Acceptance Month. These PSAs have also had thousands of views on Youtube, and right now we’re in the process of contacting national and local television networks with our friends and supporters, asking them to air Listen Up.

It’s been an incredibly busy and rewarding month. We couldn’t have even dreamed of this – any of this – happening without having, from the very beginning, your unwavering assistance, interest, input and passion. You helped us put Autism Acceptance Month on the nation’s radar for good. You helped prove what we’ve been saying all along – that anyone can achieve their goals if provided with appropriate accommodation and support. That’s invaluable, and it’s what gets us through these busy, intense and sometimes trying campaigns.

So thank you, from the bottom of our hearts. We hope and look forward to continuing to work together to create a world where everyone is accepted and included.

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Acceptance Begins at Home

by Jean Winegardner

We parents of autistic children talk a lot about wanting acceptance for our children. We want teachers, peers, potential employers, strangers, and the world at large to see our kids as the wonderful people they are, deserving of respect and embrace. Sometimes, however, the place where acceptance is lacking the most is at home and in our own hearts.

I remember when I was a new parent and autism was one of the scariest words I knew. I only knew a few things about autism, but I knew enough to worry when my oldest child played with his toy cars by carefully using them to line the truck bed of his little dump truck—and then melting down when they didn’t all fit evenly.

At the time, the possibility of autism seemed like the worst thing that could happen to a family.

Ten years later, I feel so very different. Autism has absolutely changed my family, but I am so grateful for the way we have been shaped by our neurodiversity.

Since those days, nearly everyone in my immediate family has been diagnosed with some sort of neurological difference. That oldest son has ADHD, my youngest son has sensory issues and a healthy dose of quirkiness, and my middle son, Jack, and I are both autistic.

For my family, the fear of autism was far worse than the reality.

I’m not saying that I didn’t worry about my son when we were first looking at him for autism. The uncertainty of his future scared me. It took me some time to find peace about his differences from his preschool classmates. I cried a lot that first couple of years.

But I laughed a lot too, because that boy was (and is) amazing and hilarious. After all of my fear of the unknown and the stress of learning how to work the special education system started to ebb, it wasn’t actually that much of a leap to acceptance of my child’s autism.

By the time he finally got his diagnosis, I was just relieved to have a word that gave me a direction to look for his community and resources to help him be the best Jack he could be. I couldn’t grieve his diagnosis, because it didn’t do anything to change him. Sure, our early years were stressful, but I can’t remember ever wishing he were different. Because have you met Jack? That kid is awesome.

I know that there are a lot of parents who really, truly love their children and would do anything to help them, but that hate their child’s autism. I know their children feel their love, but I worry that they feel that anger and remorse too.

I understand the fear and the uncertainty, but the river of our children’s lives are going to flow the way they were meant to regardless of how much we as parents try to alter its course. I found that stepping into Jack’s current with him and teaching him from where he swims is so much more productive than trying to make him walk upstream.

I have the greatest hopes for all three of my sons. They all have challenges ahead of them, but they will never have to think that I don’t like who they are. They will never have to wonder why I spent years trying to fix them, because I never thought they were broken. I love every part of them (except maybe the whiny parts).

It is impossible to imagine Jack without autism. If he were typical, would he still be so gentle and kindhearted? Would he still find so much joy in the world? Could he still look at life around him with his creative and imaginative worldview? Would he still have his curiosity? His charisma? His intelligence? His charming personality?

I could never be sorry about who Jack is. I don’t believe that there is some other child underneath his autism. Even if there were, I don’t want that child. I want my child.

Ten years ago, I was unable to fathom parenting a child with autism. Now I cannot—and do not want to—fathom my own child without it.

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Sharon Lewis Statement for Autism Acceptance Month

Hi! I’m Sharon Lewis, the commissioner of the Administration on Intellectual and Developmental Disabilities, at the Administration for Community Living, here at the Department of Health and Human Services. As we celebrate autism awareness and acceptance month this April, it is terrific that we are focusing on Autistic people. At the same time, we need to do so much more to move from awareness, to acceptance and on to appreciation.

I am not Autistic. I will never, ever truly understand what it feels like to have autism. But I do know that together, we can strive for understanding, acceptance, and a building of community in this country that ensures that every person, with or without a disability, is included, accepted, respected and loved. For isn’t that at the core of our human needs – belonging, and being members of a broader community?

Here at HHS, we’re doing our part to support people with autism and their families through the delivery of long-term service and supports, research and development, initiative to support improved employment outcomes, and dissemination of information through projects like Autism Now. We know there is so much more to be done, and we are striving to build upon our efforts. We also know that while critically important, government support is only one small piece of the solution. As individuals and as communities, we all must do our part.

It is very easy to be aware of autism these days. With increasing prevalence rates of diagnosed autism making the headlines every few months, awareness is not hard. It is less and less likely that you don’t know someone with autism, or that you don’t have a family member who is Autistic. There are many questions about why this is so, and we may never really know. But in the meantime we have a glorious, diverse community of Autistic people to appreciate, here and now.

My Autistic friend Nicole taught me that for her, autism stands for A. Amazing, U. Unique, T. Totally, I. Interesting, S. Sometimes, M. Mysterious.

Amazing, Unique, Totally Interesting, Sometimes Mysterious.

Without totally interesting people in our lives, where would we be?

I have friends who are great chefs. Yet I have friends who enjoy a McDonald’s hamburger more than anything else. I have friends who can do differential equations on the back of a napkin, and others who can’t add one plus one. Some of my friends cannot walk a single step, while others run marathons. I have friends who are far more articulate than I am, and I have friends who do not speak a word. I have friends who can only tell me what they need through their body movements and their facial expressions. I have friends who prefer to speak to me through social media, and friends who want to hold my hands and look deeply in my eyes when we talk. Many of my friends challenge my thinking and my assumptions in some way. And some are just easy comfort when I need them. And I appreciate each and every one of them, regardless of disability.

The Developmental Disabilities Assistance and Bill of Rights Act states that disability is a natural part of the human experience. So when do we all begin to understand that our strength, in the myriad of our differences, includes autism and other disabilities as a critical part of our shared diversity, to be honored, and to be appreciated? Both personally and professionally, my world would be so much smaller and so much poorer without any one of these friends.

We are more alike than we are different.

We need to be, not just aware, but to accept and to appreciate our commonalities and our unique strengths. I know that my Autistic friends and colleagues teach me, support me, make me laugh, and share my life. They accept my differences and quirks, and I accept theirs.

But more importantly than my awareness, and critical to my acceptance, I appreciate – and, in many cases, love – the people with autism in my life and the reciprocal community that we share.

I hope that you will take a minute or two during April, and consider not just awareness or even acceptance but to truly appreciate someone you may know with autism.

If you don’t, you’re missing out.

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Why We Need Autism Acceptance

by Paula Durbin-Westby

We need autism acceptance because too many Autistics, both children and adults, are being given the message that what we do, and who we are is not as important as “fitting in” or “becoming indistinguishable from our so-called peers.” (Our real peers are other Autistics.) Parents, educators, and the general public are being given the same message and feel like they have to comply with the mandate to normalize us or to only accept us if we are just like them.

The human race has a long history of both valuing individuality (which Autistic people have at the same time as being disabled), and also devaluing individuality, so that some of the worst of human behavior comes from extreme attempts to “all be the same.” Life is a balancing act, but recently, Autistics are getting the short end of the stick. Because we do not, by definition (including all versions of the DSM diagnostic criteria), “fit in,” there is an unhealthy focus on trying to make us something we are not.

In April, that unhealthy focus on our disability reaches fever pitch, and the unthinking (at best) and purposely negative (at worst) campaigns, such as “smothering” autism, “hacking” autism, and the like remind Autistics that we are under attack in some ways. No, my suggesting that we are “under attack” from these negative images is not any more offensive or exaggerated than some of the advertising stunts and well-meaning slogans I have seen this April.

Some of the organizations that have traditionally been the worst offenders when it comes to fear-mongering tactics are now tagging things on their websites with an “autism acceptance” label. It was inevitable. Autism Acceptance Day and Month, started by Autistics and our allies, have been very successful in countering demeaning videos and advertising. A glance at the articles and posts tagged makes it seem like those organizations are tagging things almost randomly, so that they can jump on the bandwagon of acceptance that our community founded. As my son, age ten, said regarding some of the articles misleadingly tagged with “acceptance” (one of which advocates NOT accepting autism!), “Íf you’re trying to cure something, it’s not all that accepting.”

In my work with Autistic-led acceptance initiatives, I hear a lot of questions and concerns. I will highlight just a few of these here:

I hear from parents who ask me, “At what age should I tell my child she or he is Autistic?” At the same time they tell me they have been putting it off, hoping that the child will be or seem so “normal” that they won’t have to do that hard work. If someone knows, and is told in a completely (and I have to stress completely!) accepting and positive way, that they have a “difference,” (this is not just limited to disability), and knows about it throughout their entire life, they will be OK. They won’t have to deal with the potential shock of learning about their difference for the first time when they are nine, or fifteen, and then having to rethink their self-concept.

I hear from Autistics who have been bullied in ways that are almost too hard to hear about. Some of these stories involve children who have been bullied by other kids, which is an all-too-frequent problem. An even more insidious problem is when children are bullied by adults, including teachers and parents, people who should be protecting them. Very little of the bullying literature I read discusses bullying by adults; it’s all focused on other children as bullies. I also hear from Autistics who can’t get jobs because they are “not like everyone else.” I hear about Autistics who are bullied as adults, at the workplace, or in their homes and communities. Rather than trying to make everyone in society conform narrowly to some ideal, acceptance is needed!

I hear from people whose first contact with the idea of autism comes from advertising campaigns designed to make everyone concerned and fearful. They then have to unlearn and re-learn what actual Autistic people are like, once they meet some of us.

I applaud other initiatives to promote true acceptance of Autistics and all people with disabilities and differences. To be highly successful, the concepts we Autistics have created need a wide audience and dissemination. Some misunderstanding and misuse of our ideas is to be expected, but not to be encouraged. I call on and challenge all individuals and organizations using the “autism acceptance” idea to:

  1. Acknowledge that the idea originated with Autistics- otherwise you are just appropriating our ideas and work and continuing the non-accepting, and discriminatory, model of devaluing us.
  2. Make sure that your acceptance ideas are appropriate and relevant to Autistics by including Autistics in meaningful (not token!) positions in your organizations, events, and initiatives.
  3. Think carefully about what real acceptance means. You can do this by communicating with many Autistics, by thinking about definitions of “acceptance,” by agreeing that Autism Acceptance is our term defined by us, and not using it if you don’t agree. Come up with your own idea unless you really believe in ours.
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Can You Have Inclusion Without Acceptance?

by Lauri Hunt

Imagine being told you can no longer attend your school or job because you are too different from the other people that are there. Would you challenge this or just say ok and leave?

Being told directly or indirectly that because your brain works differently that you must be educated in a segregated setting, outside of your community was hard for Henry to hear, but, because he’s been surrounded with people and information that counter this belief he was confident enough to stand up when confronted with it. Henry knows he is exactly who he is meant to be. Wonderful. Complete. Whole. He has grown up knowing that he does not need to be “fixed” but celebrated, accepted and supported. Why would he think school would be any different?

Some people truly believe that students on the autism spectrum and those labeled with more “significant” disabilities are better served in segregated settings. They feel that students with disabilities will learn more with other students with disabilities; that the presence of students with disabilities will hold back the students without disabilities. Replace the word disability with any other marginalized minority group and this all sounds so familiar. This is the same line of reasoning that was used to defend segregating people of color in schools. Brown vs the Board of Education demonstrated that separate was not equal then and the same holds true now.

Henry clearly saw that segregation is not ok just because that is all that is offered. He saw that this was not about him as an individual, but a problem with the system. He knows that he is valued, respected and accepted for being exactly who he is, not only by family and friends, but by countless others in the world.

We know that over thirty years of research demonstrates not only is inclusion socially just, it is a better way to educate all students. ‘Inclusion as Education Reform’, a research article by Caustin-Theoharis/Theoharis (2010), shows that test scores improve for all students when all learners are included.

We know that inclusion and acceptance are not privileges, but basic human rights.
Our entire family (most importantly Henry) had an absolute and unwavering conviction that attending his neighborhood school as a fully included sixth grader was the right thing.

There are many wonderful national and local advocacy groups to help support families and students with disabilities. We were extremely fortunate to have The Autistic Self Advocacy Network; The National Center on Inclusive Education, UNH/IOD; Autism Society of Florida; and people like Ari Ne’eman, Mary Schuh, Cheryl Jorgensen, and Ven Sequenzia who were directly involved and contributed significantly to our ability to approach the school district with the unwavering conviction that inclusion is the right thing.

Going to conferences on inclusive education, self-advocacy, autism, and special education law was very helpful to our entire family. It is hard to express how very wonderful it is to be in environments so full of acceptance, respect, appreciation, and generosity. It is life changing.

Three of the four people that were on the IEP call we know from conferences and were with them at the Autism Summer Institute in Concord, New Hampshire last summer. We were able to build our network that we relied on heavily for support and advice and, most importantly, Henry was able to build his.

Henry actively sought out role models and mentors for his advocacy. He decided to do something because he saw other advocates doing something, standing up for change. Henry took his stand. He created a social media campaign enlisting almost 10,000 supporters from around the world and the attention of local and national media.
Not only are advocates like Ari Ne’eman and Tracy Thresher leading by example, they are actively supporting young self-advocates in creating change within their own communities. Henry is now doing the same for others.

Acceptance and Inclusion go hand in hand.

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