Tag Archives: acceptance

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.

hearts

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.

stop_stigma2

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.

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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.

Socializing: Reboot

I had jury duty recently. For those of you who aren’t familiar with the US jury service system, US citizens are periodically required to fulfill our civic duty by reporting to a local courthouse and making ourselves available to sit on a jury panel for a criminal or civil trial. The processes vary quite a bit from place to place but often you show up for a day at the courthouse and get sent home without actually sitting on a jury.

Unless you’re really lucky. Like me. Then, somehow, you get put on a jury 2 out of the 3 times you’ve ever been called to serve.

Together with seven other people, I got assigned to a jury panel for a 3-day civil trial. The case was strange. The testimony was at times fascinating, at times mind-numbingly boring. None of that is especially what I want to talk about.

Like so much else in life these days, I approached jury duty as an experiment. A socializing experiment. I decided it was the perfect opportunity to reboot my approach to interacting with strangers. It was a relatively safe, time-limited interaction–if things went poorly, I knew that I would only have to spend three days with these people and then I’d never see them again.

In the past, I would have done my best to pass, hoping that my fellow jurors would like me and more importantly, not think I was too weird. This time around, I made a conscious decision not to worry about that.  Continue reading Socializing: Reboot

This is My Autism

Written for the This is Autism flashblog taking place today.

TIA-2 copy

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

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

Socially Inappropriate

Socially appropriate.

This innocuous phrase has turned obnoxious for me. Here’s an example of why: I’m reading a book about teaching social skills to children with Asperger’s and I come across a sentence stating that children should be allowed to time to engage in stress-reducing activities, including “self-stimulation in socially appropriate forms.”

What sort of stimming is socially appropriate, you may wonder? The book doesn’t say. Presumably everyone knows? Later in the book I find a clue. There is a list of sample relaxation activities that children can try as a way to de-escalate their stress. One of the activities is “rocking in private.”

Does that mean rocking is socially inappropriate? I assume so, since it’s meant to be done in secret only. How about flapping? Bouncing? Spinning? Playing with a stim toy? Rubbing a surface? Staring at a moving object?

Where does the line between socially appropriate and socially inappropriate lie? Who decides?  Continue reading Socially Inappropriate

An Open Invitation to Infodump

It’s rare these days that the thread of comments on a post isn’t two or three or five times as long as the post itself. This makes me happy. Happy that so many of you feel comfortable sharing your thoughts here. Happy that each post becomes a jumping off point for discussions that wind in all sorts of interesting directions. Happy that we can learn from each other.

I enjoy reading your comments–and I do read every single one of them. I especially enjoy the longer ones where a subject catches someone’s interest and they go off on an enthusiastic tangent. This happens a lot.

You know what else happens a lot? Apologizing. No sooner does someone finish writing their long detailed informative comment than they’re apologizing for it. A recent exchange with Ischemgeek made me realize how often we apologize for simply talking. I do it in the comments too and this is my blog!

And I’ve lost count of the number of times I’ve started to write a comment on someone else’s blog, then deleted it for fear that it was too long or irrelevant. I bail on comments more often than I finish them. The ones I do leave, I often end up wishing I’d said less or came across sounding more chatty and less. . . . fact-y.

No one likes a smarty-pants right? I learned that lesson early and well.

allyouare

Does Infodumping Have a Place?

We’re autistic–we have deep knowledge of certain subjects, we’re passionate about our knowledge and we want to share. This should be a good thing, but so often it’s something that we’re made to feel bad about and have been since childhood.

In that exchange I mentioned above, Ischemgeek said:

I like hearing others monologue at me (love learning & reading stuff), but I’m used to having to apologize for it when I do it, yeah. When I was a kid, I’d be told I was being domineering or rude and then made to apologize… which didn’t have the effect of teaching me not to monologue because I’m usually 5-10 minutes in before I realize I’ve been talking a while, it just taught me to apologize when I realize I’ve monologued.

Monologuing or infodumping is part of our nature. I understand why it’s discouraged in children. Monopolizing the conversation is rude. So is talking about a subject the other person isn’t interested in.

If you’re told enough times that talking about what interests you is rude, it’s easy to start thinking that talking itself is rude. Because what would we talk about, if not what interests us? We’re black and white thinkers–we come to conclusions like this as a matter of course, especially when we’re younger.

But like Ischemgeek points out, that doesn’t necessarily teach us not to infodump. It teaches us to reflexively apologize every time we say more than three sentences.

Is that necessary as adults? What if the other person expresses interest in the subject? Like Ischemgeek, I will happily listen to someone infodump on a wide range of subjects. Not only that, I’ll often prolong their monologuing by asking lots of questions. I love learning new things and am fascinated by details. When someone has an expert level of knowledge on a subject, their enthusiasm for the subject is contagious. At least I think it is.

I’ve learned about fascinating subjects I never would have pursued on my own thanks to someone else’s passion for them. Ancient Egypt. Aboriginal camp dogs. Unknown unknowns. Primate social behavior. Poaching in Africa. The epidemiology of cancer in Hispanic populations in the US. Given enough time to think about it, I could fill a page at least with topics of memorable conversations like those.

The Scientist and I are both monologuers at times. We indulge each others’ topics of interest. I know far more than the average person about a whole bunch of subjects thanks to his passionate interest in them and the same is true of him. That’s not to say all or even most of our conversations are one-sided monologues. Simply that we both enjoy learning new things and not every conversation we have has to be a typical back and forth, each person talking for equal amounts of time type of conversation.

Making Our Own Rules

I think, because we’re adults and because we can, we should put a moratorium on apologizing for sharing information that we find interesting. Starting here, in the comments. The asynchronous nature of blog comments makes this a low risk place to infodump.  We can each choose to read or skip over comments as we see fit. No one has to read what you wrote (well, except probably me).

If you have something to say that you think is interesting and adds to the conversation, say it. Don’t apologize for being passionate about what interests you or for sharing it.