Category Archives: Acceptance

#Autismisnotacrime Flash Blog

Today Gretchen Leary is hosting a flash blog with the theme #Autismisnotacrime in response to the recent (and not so recent too) stigmatizing media portrayals of autism and autistic people.

I’m low on words but after reading some of the ongoing coverage of the UCSB shootings, I made a couple of graphics:

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 Image description: Green text on white background that reads “Autism is:” followed by four choices that read “Not having friends, Being withdrawn, A lack of empathy and A neurological difference.” The first three phrases are struck out and the last phrase has a check mark next to it. Below the choices is the text “#autismisnotacrime”. 

 

as-fb

 Image description: Green text on white background that reads “Aspergers is:” followed by four choices that read “Not having friends, Being withdrawn, A lack of empathy and A neurological difference.” The first three phrases are struck out and the last phrase has a check mark next to it. Below the choices is the text “#autismisnotacrime”. 

**Because the news articles of the past two days are using the Aspergers label almost exclusively, I made graphics that use both Aspergers and autism. Feel free to share/use either or both.

 

Behavior is Communication: Are You Listening?

Behavior is communication.

This has become a catchphrase in the autism community. And for good reason. It’s certainly true.

A child runs from a store and experts assure the frustrated parent that behavior is communication.

A parent asks for advice about why their recently diagnosed child bursts into tears at bathtime and experienced parents nod in sympathy. “Behavior is communication,” they say.

A child refuses to eat anything but raw carrots and pancakes and the child’s occupational therapist isn’t the least bit surprised. Behavior is communication.

A child flaps at a wind-up toy that’s stopped moving and the experts . . . somberly intone that the child doesn’t know how to communicate . . . that he isn’t aware of the adults around him and is “trapped in his own world”, unable to share his joy with others.

An adult walks away from an autism researcher who is treating him as less than competent, preferring instead to tend his garden, and . . . cue the tragic music as the researcher looks on gravely and the viewer is made to believe that the autistic adult simply doesn’t know how to have a proper conversation.

What’s going on here?

Why is certain behavior treated as communication and other behavior treated as a failure to communicate, often in the same person?

Somehow a phrase that started out as a positive step toward understanding autistic behavior in the absence of language has become associated primarily with meltdowns, self-injurious stimming, eloping and other obvious signs of distress.

Why is that? Do autistic people only communicate distress through their behavior?

In case the answer to that question isn’t obvious: No, we communicate a whole range of emotions and messages. But much of it seems to get lost in translation.

That toddler flapping at the wind-up toy? It looks to me like he’s saying, “that was fun, do it again!” It’s not his fault that the so-called experts in the room don’t speak autistic as a second language.

Going Beyond the Obvious

Meltdowns. Elopement. Biting. Hitting. Crying. Refusing to eat certain foods. These are not the only autistic behaviors that are communication.

Stimming is communication. It’s not enough to simply assume, “this person is stimming so they must be stressed or anxious.” Sometimes stimming is about anxiety or sensory overload. But it’s about so much more than that, too.

My stims are a language unto themselves. I have a stim for every mood, and while the physical movements may sometimes be similar, the feelings that go with them are distinctly different. My happy flapping is different from my grossed out flapping. My excited bouncing is different from my nervous bouncing. The autistic body is constantly communicating and it’s saying so much more than “I’m in distress.”

“Lack of communication” is communication. Autistic attempts to interact with others are often overlooked because they are atypical.

Did you know that an autistic person may express interest in something by studying it for a long time rather than directly engaging at first? Many of us like to understand how all the parts of an object work or how a person responds in different situations before we feel comfortable interacting. And persistent questioning, monologuing, or echolalia–often dismissed as unidirectional communication–are all signs that an autistic individual is seeking to connect.

Eye contact (or lack thereof) is communication. But it’s not the kind of communication that most people assume. If I’m staring off to the side while you’re talking to me, that’s a sign I’m intensely concentrating on what you’re saying. And if I’m making intentional intermittent eye contact? I’m more focused on “passing” to avoid looking odd than I am on listening to what you’re saying.

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And that’s just one simple example of how using a neurotypical “dictionary” to interpret autistic behavior and body language can lead to chronic miscommunication. Understanding that behavior is communication is a good first step. But it’s not enough to look at autistic behavior and guess, based on neurotypical experience, reasoning and cultural norms, what that behavior means or doesn’t mean.

Only through accurate translation of autistic behavior can real communication occur.

For that to happen, autistic individuals–including autistic children–need to be allowed to communicate a broad range of messages in the ways that are natural for them. Forcing a child to make eye contact or to stop flapping is the equivalent of forcing them to speak a foreign language. It’s telling them that if they want to use behavior to communicate more than distress, they’ll have to speak another language because theirs is substandard and the people around them can’t be bothered to learn it.

“Behavior is communication” has to apply to more than just a small subset of behaviors or it’s no better than “quiet hands” masquerading as acceptance.

This post is part of the 2014 Autism Positivity Flash Blog happening today

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Creating Autistic Spaces

I don’t have a comment policy on my blog. Why? Probably because if I did, I’d have to enforce it and that seems like a lot of work. What I have instead is a guiding principle: this blog is autistic safe space.

A safe space is a place–physical or virtual–in which harassment, hatred or violence against a group is not tolerated. Some safe spaces try to be universally safe, with a goal that no one will be made to feel uncomfortable or unwelcome based on race/ethnicity, sexual orientation, gender identity or expression, cultural background, age, or physical or mental ability. While I think that’s a wonderful ideal to aim for, that’s not what I’m doing here.

This is specifically autistic safe space. That means that I’m specifically vigilant about comments that promote hatred, stigma or violence against autistic people. How is that different from safe space in general?

Well for one thing, some people are going to feel unwelcome. For example, people who want to come here and complain about how miserable the autistic person in their life makes them? Unwelcome. People who want sympathy and a gold star for putting up with an autistic partner? Unwelcome. People who talk about the autistic person in their life in a demeaning or dehumanizing way? Unwelcome.

Autistic safe space means that autistic people can (hopefully) read the posts and comments here without having to worry about encountering hateful or demeaning speech. It also means that autistic communication styles are respected and we can talk about the hard things without worrying about someone making fun of us or using our words against us.

Sometimes things get a little messy in the comments, but I do my best to keep everyone on the safe side of honest, engaged discussion.

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Other Kinds of Spaces

I think of autistic safe space as a kind of middle ground, between autistic friendly space and autistic space. There isn’t necessarily a clear definition of each of the three, but for the sake of helping people new to these concepts understand them better, I’ll take a stab at describing them.

Autistic friendly space tends to be predominantly allistic space which has been modified to make it more welcoming to autistic people. For example, sensory friendly film showings or an event that features flapping instead of clapping, is held in a hall without fluorescent lighting, requests attendees to be fragrance-free, provides communication badges, has a quiet area and does not allow flash photography.

An autistic person isn’t necessarily going to feel totally comfortable in autistic friendly spaces, but there are considerably more accommodations made than in the typical public space.

An autistic safe space takes the concept of autistic friendly space one step further, putting the autistic person’s needs first. Often safe space has a greater emphasis on safety with regard to identity and expression whereas friendly space has a greater emphasis on disability accommodations.

Online, autistic safe spaces are very much about safe speech. In person, the concept is extended to physical expression, meaning that things like stimming and atypical communication are welcomed and accepted rather than simply tolerated. Safe spaces are often a place to explore difficult topics and push at boundaries without the fear of rejection or humiliation.

Autistic safe spaces can be mixed spaces, but are generally autistic led. Sometimes this works out really well, with people of different neurologies sharing experiences and learning from each other. And sometimes it turns into a disaster. I’ve seen both cases firsthand and, ironically, when things go wrong in a safe space, people can be hurt badly. Much more so, it seems, than when things go wrong in typical public spaces.

Finally, there is autistic space. I was going to define autistic space as one in which all participants are on the spectrum, but then I realized that my home is autistic space. It’s a place where I feel completely comfortable to be myself and where my communication style is honored. It’s a place where I have minimal sensory distraction. A place where I know what to expect.

Perhaps autistic space is a cultural construct rather than something that is created strictly by the neurology of the participants. And that feels like an idea that’s too large to get into in the final lines of a post, so I’m going to set it aside for another day.

Combat This

The Combating Autism Act (CAA) is up for re-authorization in the US Congress and ASAN is asking autistic people and their families to let Congress know that the CAA needs to be reformed. If you can want to know more, you can read ASAN’s message. There is a Twitter campaign taking place today and a flash blog next week to raise awareness and encourage people to contact their congresspersons in Washington.

Because I’m a bit of a wonk, I read the CAA last night and then I read the GAO’s report on the CAA. Fun times. One thing that struck me is how autistic adults, if they’re mentioned at all, always come last. When it comes to autism policy and research, we’re barely an afterthought.

But that’s not really what this post is about. The theme of the actions around the CAA is #stopcombatingme, a reference to how damaging the language we use in the “fight against autism” can be. So I decided that for the flash blog, I would fix some of the common autism slogans.

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stop_ableism

stop_hatred

stop_ignoranceThere. Fixed it.

I Am Not Temple Grandin

Recently, while writing something, I was struck by the idea that there is no Rain Woman, no archetypal autistic woman in pop culture. Later, I realized that while we don’t have a fictional archetype, there is a woman who many people associate with being autistic.

If you’re a woman on the spectrum, within moments of mentioning to an acquaintance that you’re autistic or have Aspergers, you’ll often be asked, “Have you heard of Temple Grandin?”

This is a bit like asking a physicist if they’ve heard of Stephen Hawking. Probably, right?

The thing is, the average physicist has little in common with Stephen Hawking. And I have little in common with Temple Grandin.

I’ve seen Dr. Grandin’s speeches, read her writing, and heard a great deal about her accomplishments and her life story. And aside from the fact that we’re both on the spectrum and are women, we have very little in common. She has an advanced degree, is a professor and internationally recognized speaker, and has invented technology that revolutionized her field. She was diagnosed with autism as a child and had extensive therapy growing up. She is unmarried and has chosen not to have children. She’s been known to say that her work takes the place of an intimate partner relationship in her life.

Temple Grandin fits the popular culture model of “autistic equals brilliant loner” and like the Rain Man stereotype, I can’t see myself in that model. For one thing, I’m not brilliant. There’s a huge gap between smart and genius. Smart is getting a perfect grade on a math test. Genius is reinventing the way something is done. I would love to be a genius. Who wouldn’t? But I’m not and, in fact, few autistic people are.  Continue reading I Am Not Temple Grandin

Love Not Fear

There’s a flash blog this Friday. I’m posting my contribution early to signal boost a bit – entries are due by Thursday at 12:00 PM, so if you’re going to join in the fun, you should get cracking! Click on the image for more details.

flashblog-entry

Love not fear. I’m finding this prompt hard to write about because, for me, love goes hand-in-hand with fear. To love someone is an act of great vulnerability. It opens us up to the possibility of loss and pain, and that’s frightening.

To love a child is an especially vulnerable act. In addition to all of the other fears that relationships can bring, there is a special fear that comes with parenting: the fear of failing our child.

Parenting is hard and confusing and by nature we all go into as rank newbies. What if we get it wrong? What if we make a colossal mistake and our child’s life is forever changed? What if we make a whole bunch of little mistakes and in the end that adds up to a colossal mistake? There is no greater responsibility than that of guiding another human being to adulthood.

When that human being is autistic, the stakes are suddenly portrayed as being so much higher.

Thanks to the culture of fear that’s risen up around autism, parents of autistic kids get handed an additional set of fears. They get an itemized list of all the things that are wrong with their child and all of things that their child won’t do and all of the ways that their child is behind other children. Their child might only be two or three years old, but the experts are already confidently making predictions about his prospects for employment or her prospects for college, of how unlikely it is that he’ll have children or that she’ll get married.

Parents of autistic kids hear burden and tragedy and epidemic and they sense that they should be very afraid. More afraid than parents of children who aren’t autistic.

Afraid of what exactly? That their child will turn out like me?

Because if the parents of a newly diagnosed autistic child were sitting here in front of me, I’d tell them that their child turning out like me would be a pretty awesome thing. Yes, being autistic is hard at times. Yes, we aren’t like most everyone else. Yes, an autistic child needs extra support and accommodations and will develop along an atypical trajectory.

That’s not something to be afraid of, though. There will be a steep learning curve at first, but there is a big community of autistic adults who can help. We were autistic kids once, so we know what it’s really like to grow up autistic. A lot of us are parents too, in fact, so we know about the ups and downs of raising a child. And we’re happy to help.

Why? Because we want our younger brothers and sisters on the spectrum to grow up in a culture that loves and accepts them. We don’t want their parents to fear for their future. We know that raising a child–any child–can be scary. But we’ve seen what happens when fear becomes the driving force in parenting. Without plenty of love to keep it in check, fear distorts and damages the parent-child bond. Worse, it robs a child of the one thing they need most–the security of knowing that they are loved by their parents, unconditionally.

Love and acceptance aren’t just catchy buzzwords. In fact, you’ll probably never see them in ad campaign for autism awareness. Why? Because they’re free. You don’t need any special training or a college degree or a research study to love and accept your child. You already have everything you need to start doing it right now.

This is My Autism

Written for the This is Autism flashblog taking place today.

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I write a lot about the more challenging aspects of being autistic but not today. Today is about the awesomeness that is my autistic brain.

When I read Suzanne Wright’s letter about Autism Speaks’s view of autism, I was shocked and angry. Again and again she used the phrase “This is Autism” in bold letters. Yet the autism she was describing was nothing like the autism I know. I watched the protests unfold across the internet and still those words burned in my mind: This is Autism. Linked to misery and loss, burdens and hopelessness, broken families and broken children.

That’s not my autism and it’s not the autism that I see in the people and families in our community.

What is my autism?

This is my autism: Getting stuck on that phrase and not letting go of it. Getting so stuck that I can’t not think about it. So stuck that I have to act. Perseveration. Obsession. Special interest. I don’t need a national Call to Action. All I need is an idea that I can’t let go of.

This is my autism: Waking up in the middle of the night and creating a flashblog website. Because if my body has decided that we’re done sleeping for the day at 1:45 AM, why not put those extra hours to good use.

This is my autism: Learning to use Blogger, because I’ve always been curious. Reading, researching, problem solving. Forgetting where the new post button is every single time, even though it’s big and orange. Or maybe because it’s big and orange.

This is my autism: Stimming with joy at the first submission, at the enthusiastic signal boosting and the support of our allies, at watching someone type their thoughts into the submission doc, at logging in to find a dozen new submissions, at reading the words of so many people who feel like I do about autism–words that directly counter what Autism Speaks wants the world to think.

This is my autism: Hyperfocusing for hours on scheduling posts. Making a plan. Creating a system. Organizing, organizing. Cutting and pasting, cutting and pasting, cutting and pasting. Making notes and lists. Rewriting the lists. Revising the system. Rewarding myself with a cupcake.

This is my autism: Completely immersing myself in something I love. There are no half measures, no going slow, no wait and see. Once I’m in, I’m all in.

Autism is different for each of us. It’s hard and joyful and confusing and wondrous, just like life. It’s what makes my brain seize onto an idea and race after it, full of excitement, completely engaged.

This flash blog? This is autism.

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a/n: Thank you to all of the people who supported the flash blog by contributing, signal boosting, sharing and cheering it on, especially Beth, Heather, Sharon, Alyssa and Leah for their help in organizing and promoting it these past few days.

Autistic as a Reclaimed Word

Most adults on the spectrum prefer to be called autistic, rather than a person with autism or a person who has autism. The general consensus is that autism is not a separable entity. To be “with” something or to “have” something implies that we might somehow be able to rid ourselves of that thing and still be the same person, much like someone who has been cured of a physical illness.

I have always been autistic and always will be. If I was not autistic, I would be a completely different person. My autistic neurology affects how I experience the world and how the world experiences me. I am autistic. This feels very simple and logical to me.

It is not, however, always as simple for others. I’ve noticed that a lot of people in the autism community (which is different from the Autistic community) find the use of autistic as a label offensive or at least uncomfortable. The primary argument is that “autism doesn’t define” the person that they are reluctant to call autistic (often a family member).

Inherent in that argument is the belief that autism is a negative attribute. Why else would someone be averse to being “defined” by a trait? Would we say, “don’t call Tommy intelligent because his intelligence doesn’t define him” or “don’t call Katie blue-eyed because her eye color doesn’t define her.”  Continue reading Autistic as a Reclaimed Word

The Myth of Passing

Autism is often a hidden disability. There is no universally visible signifier–no mobility aid that we all use, no assistive technology or service animal or language common to all or even most autistic people. While many of us use assistive technology, many others go through our days–our lives–passing for nondisabled.

Or do we?

If you’re autistic, you can probably recognize other members of the tribe fairly easily. Maybe by their stims or their use of AAC, their noise cancelling headphones or by the body language that’s so like your own. We all have our tells.

I know mine. Atypical eye contact and body language are the most obvious. Occasionally my voice gives me away as different–it’s too loud or too mumbly or too flat or simply decides not to exist. If none of those is a tip-off, well, it’s only a matter of time before I have a social communication mishap.

Still, I go through life quite convinced that I’m passing. That my disability is oh so well hidden.  Continue reading The Myth of Passing

Focusing on Assets, Building on Strengths

A few months ago, I watched a lecture by Sam Goldstein about resilience. At the start of his talk he mentioned how in Utah, teachers used to begin IEPs with a discussion of a child’s strengths. They’ve moved away from this in recent years because, as he put it, many teachers felt that listing what a child can already do well is a cursory exercise–in other words, a form of busy work that was taking up time they could be using to list all the things the child can’t do.

Now imagine that child moving through school, trailing this long list of things he can’t do behind him. That’s twelve-plus years of people emphasizing what he’s bad at and what he needs to fix. If he’s lucky, he has at least one cheerleader in his corner, telling him what he’s good at. Because when he sits down to fill out his college applications or goes for his first job interview, no one is going to ask him what his worst subject is or what he can’t do.

Transitioning into adult life requires knowing your assets. Universities and employers are looking for people who know how to put their strengths to work for them. Assets, Goldstein says, insulate us from risk and make us resilient to adversity.

The tension between building on assets versus fixing deficits is at the core of what we face as autistic people living in a neurotypical world. Much of what is framed as interventions and skill building and self-improvement is about being more normal, about “passing” better. But that feels like a Sisyphean task.  Continue reading Focusing on Assets, Building on Strengths