Wednesday, April 30, 2014

Autism Acceptance Month 2014: Ally Grace

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with Ally Grace. Please read, listen, and share.

A bit about me: I am an autistic woman, and I live in a household full of autistics. My partner, Bart, and my four children, are also autistic. We live in Australia. I love to read and write, and I am a proponent of radical parenting reform and radical education evaluation; especially in regards to autistic children. I have a strong belief in the abilities of all children and adults to be highly motivated and ethical beings, and I dream of a day when more trust is put into our autistic children and adults. My own children are raised without the use of Behaviourism, and without coerced learning. I have an interest in social science and philosophy, and in the patterns of social change. I blog about family life, my thoughts, and my own experiences, at suburbanautistics.blogspot.com.

What are some things you like people to know about you?

I would like people to know that I care a lot about other people and all sentient beings, and that this way of feeling permeates everything that I do. I would like for people to know that judging my character and intentions by first impression or by how I act under duress is not going to be accurate and that it will hurt me to see you so rashly draw a conclusion from such little information. I would like people to know that when I say something about myself, it is true and authentic and it is not some social ploy to make you think something specific about me, or to fit myself into some kind of mould or category or group. I would like people to know that it is very painful being misunderstood so often, and that taking the time to really get to know me, is appreciated more than I can say.

I would also like to communicate that I am lots of things, as all of us are. Being autistic does not give my soul less dimensions. It doesn’t make me simpler. I am anxious and silly and honest and passionate and kind. I am happy and sad and angry and scared, and loving and dedicated. I am a child and an old woman and a mother and a lover. I am driven and I am relaxed and I am content and I am always striving for better. I am lost and I am free and I am home and I am searching. I am complex, like all of us are, and I love that complexity and that mess and that imperfection.

Yeah, that is what I would like to communicate most of all about me. That I am a contradictory mess of human-ness.

What are some things that make you happy? Why?

A lot of things make me happy. Being in the sun makes me happy. The kind of sun that feels like a blanket of glorious warmth, covering  my legs and my face and my toes and making my hair warm to the touch. I love the smell of Eucalyptus in the breeze, and the smell of a bonfire on a cold day. I love to prepare a meal from scratch and savour everything about it.

My children’s independence, freedom, and spirit, make me happy in ways that cannot be described well enough to justify trying at all.

Having a lover and constant friend to share my life with; gives me a deep happiness that I am only just beginning to realise and fully acknowledge.

What makes me passionately happy in a way that makes me really come alive, is solitude used for writing and thinking and collating information. I love the observations that solitude allows; the noises of the world, the smells in the air, the colours all about, the words incessantly spoken, the shapes and the patterns and the signs and the faces. Those tiny huge things that others don’t seem to really notice. Those tiny huge things that paint the big pictures that only observers can see. I love the jumbles unravelling and becoming clear. I don’t recall a time when I ever had to pull apart the jumbles. I always saw the parts, and I suppose this is what told me that I was different somehow, even before I learned about autism and long before I learned that there were other people like me.

What are some things you avoid whenever possible? Why?

I avoid going to new places without some kind of escape plan or an in-depth understanding of what it will be like. I have all kinds of issues with direction and becoming lost and disoriented. I freeze up so often when under stress, that I tend to become dazed and distant. It feels a bit like an out-of-body experience. This does not feel safe to me and so I will avoid getting myself into positions like this. This is why I like familiar places and hangouts.

I have a deep fear of the cold. I am also afraid of loud noises, especially shouting or fighting. I will do whatever I can to escape those two things -- they invoke a real and all-encompassing fear within me.

What features does your ideal living space have, and why?

My ideal living space would have a library full of books of all genres and times. It would be sparse otherwise but I would love places of colour and excitement. Somehow it would need to combine novelty and adventure; with safety, love, company, challenge, and solitude. I love travel and newness, but with enough security that I can feel safe even within the unknown. Organised chaos, is perhaps how I would best describe my ideal living arrangement. I think the setup would be something very sparse, like a motorhome or even just a bag; but then I would have some kind of safe and constant space too, for down time. I have ADHD as well as being autistic, and sparseness works best for my busy mind.

What are your favorite books, movies, and/or TV shows?

My favourite book series is The Best Australian Essays project. I gravitate toward gutsy writing and narratives in which people deliberately push through the social expectation that we should all be pleasant and appropriate. I think this is why I love the essays -- written by people who speak up and talk in depth about topics that most people don’t want to think about. I also really enjoy the older works of Western philosophers and the wisdom of Indigenous people. My favourite film is Strictly Ballroom and I like social documentaries. I am also a massive Tim Winton fan.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I think, to put it simply, that actual autistic experience is what we should see more of; rather than what autistic experience looks like to a non-autistic person observing them, and rather than what other people think about autistic experience. It seems like about time that we acknowledge things from the perspective of autistic people, as opposed to the perspective of everyone but them.

What are some things you'd like the media and other people to stop saying about autistic people?

I’d like society in general to stop thinking that observing autism from the outside, is any way to accurately learn about it. Whose idea was it to sit and watch autistic people, making notes in a clinical setting, rather than actually asking autistic people what it felt like to be them? Western Science is not as impartial as it believes itself to be. I’d love for society to stop viewing autism in terms of “behaviours” and to instead see autism as an entire means of life. I’d love for outsiders to stop instantly and intuitively attributing motivations to actions -- the autistic person can state their own motivations and NT assumptions are usually wrong.

Some phrases I think should disappear in reference to autism (unless these ideas are being challenged or discussed in depth):
  • “black and white thinking”
  • “violence”
  • “mental age”
  • “burden”
  • “emotionally deficient” or “have trouble feeling emotion” or similar.
  • “cannot see things from the perspective of others”
  • “behavioural training”
  • “epidemic”
  • “indistinguishable from peers”
  • “cure”
  • “hate”
I would like to see a base respect for autistic people, any time autism is mentioned. That would involve all of us being mindful every time we speak, and it would involve the NT population to start to think of things from the autistic perspective instead of from the dominant NT perspective that is so normal in present time.

If you could change one thing to make the world more friendly to autistic people, what would it be?

I would love for autistic people, of all ages, to be able to communicate that something is wrong or that they do not like something -- and to have that respected and listened to. In my own home, my children tell me what bothers them and they tell me what is going on with them. People often express disbelief that I know what is going on with them; however, it was them who told me and not something I did that was somehow clever or amazing!

It seems that this idea of actually listening to autistic people and believing that they have valuable things to say, is radical in itself. I think it would be great to see all autistic children and teens and adults, given this same chance and then having their words respected. Too often, we just do not get listened to when we communicate things that are vastly important to our well-being and happiness and coping abilities. Whatever means we choose to communicate, we have not been listened to in the past, and that is what I would like to change most of all. We know ourselves better than anyone; and it is a very dangerous thing for outsiders to believe that they know us better than we know ourselves. We are capable! With the increase in communication options for autistic people, this is now more possible a dream than any other time in modern history.

Tuesday, April 29, 2014

Autism Acceptance Month 2014: Star Ford: Specificity

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with engineer Star Ford, whom we spoke with earlier this month about the Ocate Cliffs project. Please read, listen, and share.

There's a lot of stuff out there aimed at or against autistic people -- therapies and services -- but there is a big disconnect between that and what we really need. The industry churns by its own internal incentives and since we're generally not paying, we're not driving -- usually not even asked. I think most of us can feel what we don't like, when an intervention is done to us, and many can also articulate what we don't like. But fewer people can articulate why we don't like it, and almost no one can articulate the alternatives. I've asked autistic people what services they "really need," and searched blogs for it, and the answers, at first, don't seem to be there.

I'm a pattern thinker and engineer, and creating systematic ways to accomplish things is what I do for a living, so I tend to apply that to everything. Usually if I study something long enough I arrive at some answers -- systematic patterns, frameworks. So I've thought in that same way: what if autistic people designed our own support system, what would it look like? But my asserting that question and feeling consistent resistance tells me that there is already a breakdown in the very question, which I will get to in a minute.

First, here are some actual and plausible answers to the question "what do you need," focusing on functional things:
  • A ride to downtown
  • Fixing my internet connectionA piece of fabric with 2 inch yellow stripes
  • Someone to go with me to an office on Tuesday morning
  • A weighted vest
  • A quiet room
Sometimes the support systems can help, and sometimes the system response is something like:
  • We don't do that
  • That isn't important
  • We can teach skills so you can do that yourself

Notice these things we need are highly specific and individualized. That's one thing I've learned from just listening: autistic people very often articulate in detail the exact thing they need at that time.

In my life I've experienced it this way: I'm going along doing everything I can for myself, because I'm naturally independent, but some things I can't do (because they require some buy-in from someone with more power) and that's the obstacle. I have a path and I can't go on until the first thing in my sequence is done. For me the biggest one is personal marketing -- I needed someone to network and interview with me in academics and for my job. But there is no agency that can do that, so life is a series of closed doors and I don't mature and move to the next level in that work arena because I'm still stuck at an "entry level" in work relationships, having not gotten that kind of individualized support.

I was lucky not to get the destructive kind of help, but I've seen it. A friend of mine was moving to an apartment, and she needed help, and the system offered lots of help, but it was all according to the agency's way of doing things. She actually needed things like: an internet connection, a place to resolve problems with her mother, a lot of quiet time, and someone to call and check on her a few times a day. But the team of social workers wanted to have a helper there for hours at a time, and said the mother issue isn't important now. They were directing every task and pressuring her to go down a different path. The calls and internet and occasional visits would have cost the agency less, but that's just not "what they do" so it was impossible. I think this kind of treatment is destructive because a person should build her life out of the steps that are the most relevant at the time, and it is that process of moving through life from the heart that gives us more strength and self awareness than just skills training or following someone else's direction.

Consider the whole economy is a way for allistic people to get what they need from other people; no one graduates and becomes "independent," so there is no reason why we shouldn't also have a slice of the economy that supports us in an ongoing way throughout life. It should not be a goal that we graduate from supports.

The industry mindset is to get "better" at "treating" "autism" with "best practices" and "evidence," all of which kind of thinking commodifies their product into a less creative endeavor, we become the livestock that the practices are applied to uniformly and suddenly there is no reverence for the soul and the spiritual journey. (As an aside, when livestock practices are practiced on animals, I can only assume the same thing happens to them.) So I just don't feel it is about accumulating evidence supporting the "best way" to do things, and that's why the original question is suspect.

So if there is a system to meeting people's needs, it has to be about specificity. I would want to access help that is about growing into my full beauty as the autistic person I am, not just mitigating my failures and being at a remedial level in life. Whether I was getting support or helping others, I'd be excited about finding a creative way to meet the specific needs the person one at a time, without the baggage of assuming what autistic people need.

A really obvious starting point for all this is to hire autistic people to work in the service agencies, tasked with that one-on-one creativity of finding solutions. That would at least make the agencies more accessible to the people they are supposed to serve. Another level would be running the service agencies ourselves. A third level is linking up our time and needs among each other in an accessible market, outside of government.

Autism Acceptance Month 2014: Nick Mediati

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with technology journalist Nick Mediati. Please read, listen, and share.

What are some things you like people to know about you?

I’m a freelance editor and writer based in the San Francisco Bay Area, focused primarily on technology journalism.

I’m a fairly new member of the autism community, having received an official diagnosis last December, but my discovery process was years in the making. I first learned about Asperger Syndrome when I was in college, and it instantly resonated with me.But at the same time, I remember thinking, “That isn’t really me, is it?”

But as I learned more about autism beyond the Wikipedia entry, and learned about all the different ways it can manifest itself, the more I realized that it actually does fit, and that it accounts for so many of my struggles -- and my strengths.

Oh, and I generally find these sorts of introductions hard to write. So much to think about!

What are some things that make you happy? Why?

Baseball, for one. I’m a passionate fan of the Oakland Athletics; little beats spending a warm summer afternoon in the bleachers at the Oakland Coliseum. Of course, I’m awful at actually playing baseball -- thank you, awful coordination -- so I settle on watching it instead.

I also enjoy working in my garden. I grew up watching my mom work in her garden, so it’s something I’ve always been around. I particularly enjoy growing vegetables in my back yard. There’s something rewarding about growing your own food.

What are some things you avoid whenever possible? Why?

I’m not a big fan of tasks with high mental overhead, for lack of a better term. It’s why I put off making important phone calls -- or answering these questions, for that matter!

Unstructured social encounters are high on my list of things I avoid. I don’t always know how to act, what to say, or what to talk about. Give me a topic of mutual interest, and I’ll talk with almost anyone. But otherwise I’m lost.

I try to avoid uncertainty or circumstances where I don’t know what’s expected of me. I tend to freeze up in those sort of situations, and it’s gotten me into trouble in school and on the job.

Sensory-wise, I am fairly particular about the kind of clothes I wear. I avoid any clothing that I’ll actively notice, so mainly I stick to T-shirts and jeans.

What features does your ideal living space have, and why?

Light and airy with lots of natural light during the day, cozy-feeling at night. I don’t need a lot of living space, but I enjoy having a sizable garden. In a perfect world, my home would be organized and clutter-free, but in reality, I live in a state of organized chaos.

I don’t drive, so ideally I need a place that is within walking distance of a shopping area and has good public transportation. I like small cities (e.g. 50,000-75,000 residents) the best; you have everything you need, but it isn’t too crowded.

What are your favorite books, movies, and/or TV shows?

I don’t watch a whole lot of TV, so I have almost no idea of what’s popular these days, but I do enjoy watching cooking shows -- particularly America’s Test Kitchen. As for movies, I enjoyed The Lego Movie when I saw it recently. I also enjoy Moneyball -- both the book and the movie.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I’d love to see more women, more people of color, and better representation of how broad and how diverse the autism spectrum can be. There seems to be a tendency to stick to stereotypical Asperger’s characteristics or go the route of Rain Man, but I’d love to see more nuanced characters that defy stereotypes and functioning labels (e.g., “high-functioning,” whatever that means).

I’d also like to see more characters like Hank in Parenthood. On the show, Hank came to the realization that he might be autistic as a middle-aged man. And although he hasn’t received an official diagnosis on the show, I can relate very much to the character’s personality and experiences. Show me more adults who are making the realization that they may be on the spectrum.

What are some things you'd like the media and other people to stop saying about autistic people?

Words like “burden” and “epidemic” are the first things that come to mind. I’d also like to see the mass media learn a thing or two about what autism is -- and isn’t -- and stop perpetuating hurtful and harmful stereotypes.

If you could change one thing to make the world more friendly to autistic people, what would it be?

Better understanding and acceptance of others. Don’t try to “fix” autistic people; accept them and love them as they are.

Monday, April 28, 2014

Autism Acceptance Month 2014: TH

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with TH, age 12. Please read, listen, and share.

What are some things you like people to know about you?

I am shy, so nothing.

What are some things that make you happy? Why?

Chess and Minecraft. Because they are fun games in my opinion.

What are some things you avoid whenever possible? Why?

People that I do not know, because I am very shy as you may have already noticed.

What features does your ideal living space have, and why?

I am not entirely sure, but I like the couch that I am on and the laptop I have.

What are your favorite books, movies, and/or TV shows?

I like Spongebob Squarepants, the Star Wars franchise, the Indiana Jones series, and a book I just read about the Mayflower.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I'm not sure, because I have rarely even seen any Autistic stories.

What are some things you'd like the media and other people to stop saying about autistic people?

The media is useful and misleading at the same time. Therefore, while some media outlets will tell you the correct terms of Autism, others will not. I would just like those who mislead people to be nicer about it.

If you could change one thing to make the world more friendly to autistic people, what would it be?

Since I rarely ever interact with other Autistic people, I have yet to say what they actually like. Some children I saw liked video games and Pokemon, so all I ask is they keep making Pokemon games.

Friday, April 25, 2014

Autism Acceptance Month 2014: M. Kelter

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with writer M. Kelter, who blogs at The Invisible Strings (theinvisiblestrings.com). Please read, listen, and share.
 What are some things you like people to know about you?

Life is easier when people know my conversational strengths and weaknesses. When I'm around people who know that I generally lack body language ... that I may not make great eye contact ... and when those people are okay with it, life is good. Other people can misinterpret these traits to mean I'm not listening or not interested in what they are saying, which leads to awkwardness and/or hurt feelings, which is not what I want; so generally I like for people to both know and understand my interaction style. Basically, when that is the case, I can skip over the “unwritten rules” of conversation and just have more direct, meaningful social encounters.

If you mean what should people know in more of a biographical kind of way, I would say: I was diagnosed with ASD at the age of 30; I primarily struggle with social pragmatics and sensory issues. Due to an aversion to lights, I worked a graveyard shift for eleven years. I'm currently pretending to be a freelance writer.

What are some things that make you happy? Why?

I ran into this mom and her little girl recently at the grocery store. The kid was probably five or so, and she just stood there, rubbing her nose, rambling about her favorite movie. Most of what she said made very little sense; her phrasing was odd; she never provided much context for her statements. And it was a complete joy listening to her. She was just 100% herself, not worried about how she was perceived or the world around her. It's an example of something that makes me happy, moments like that. The rare moments with other people, where they are just talking out of their heads, being strange and authentic -- it's a pretty great thing. It doesn't happen a lot, most people are concerned about the way they are perceived. They're guarded, concealed. Kids are better at life, in that regard. But it happens sometimes, conversations where people are just themselves, it's always nice.

Honorable mentions: reading, books, writing.

What are some things you avoid whenever possible? Why?

The sun. I fantasize daily about living in a cave or in one of those towns in Alaska where it's dark for six months out of the year (for the other six months I would probably retreat to the cave).

Elevators. Elevators are nightmare etiquette boxes. I've only ever had awkward experiences in them. They're packed with too many subtle, unwritten social rules; I always find a way to make mistakes. I've learned to just take the stairs.

Haircuts: if you go to a barber/salon, haircuts manage to combine social interactions and sensory discomfort. It's no good. I avoid these in a big way; started cutting my own hair years ago. It shows ... I do a pretty crappy job of it, but I get by.

What features does your ideal living space have, and why?

Growing up, my parents wouldn't let me nail blankets over every window ... in my mind, that was the idea set up. As an adult, once I moved into an apartment, the first thing I did was nail blankets over every window. This understandably frustrated my roommates. Eventually I got my own place; the blanket/window thing ensued. So that was a nice, sensory-friendly deal. But now I have a girlfriend, and that has motivated me to see what compromise looks like. We try to split the difference; I have a few spaces that are mine, they stay dark. In other areas, dimmers have been installed on all of the lighting so that we can make changes as needed.

When it comes to "ideal living space," I've basically gone through the full Goldilocks scenario: I've had zero comfort, total comfort and then the middle ground. I much prefer the middle ground; it's nice to find a way to establish a comfort zone, yet one that is equally comfortable for others.

What are your favorite books, movies and/or TV shows?

I spend a lot of time trying to figure people out, so I tend to react very strongly to fellow people-watchers. The In Search of Lost Time novels by Marcel Proust are basically a master class in people-watching. The narrator just roams around aimlessly, going to parties, eavesdropping, hanging out with friends. In each setting, he provides an entertaining play-by-play of social codes, status hierarchies and quirks of behavior; it's all very funny. Balzac is another people-watcher; his Lost Illusions is a good example. I re-read the Gormenghast novels by Mervyn Peake regularly; for some reason, I like the warped, ingrown personalities in those books.

I like autobiographical comic books.

I'm fascinated with Jacques Tati's film Playtime. It has nothing to do with autism, yet I would recommend it to anyone who wants to know what the world looks like to an autistic. The visuals are disorienting; the sounds are intrusive; the social dynamics in the film are constantly shifting, difficult to follow. The world of the film is how the real world looks to me, even down to the perceptual level. I think it's a great film to watch on it's own terms, but I also think it makes for an interesting exercise in achieving a state of empathy with a different POV.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

The big problem I see with autistic characters in fiction is that they tend to be written from a neurotypical point of view, with a neurotypical audience in mind. The result is that autistic characters are reduced to a fixed set of rigid traits. To me, they always feel like two dimensional, cardboard cut-outs. So one thing I would like to see are autistic characters with more depth and complexity.

I think when creating an autistic character, writers feel compelled to dutifully incorporate every description from the diagnostic manuals. They do their research, their intentions are good, but the end result is a bland character that seems more like a walking diagnostic manual than a real person. I think this is why the general public thinks of autistics as rigid, expressionless ... that's how they're written in all of these crappy movies and television shows. So, I would like to see more range ... I would like to see characters with thoughts and internal lives. One day, someone is going to create a fictional autistic character that is actually allowed to have a personality, and I think it's going to be pretty great. I worry that we're a long way from seeing that happen.

I would add: as an adult autistic, I'm tired of seeing adult ASD characters that are devoid of sexuality. Even if a character has a romantic experience, it is often treated as a comedic moment, or the character is childlike in relation to their own desires. We are long overdue for a mature, grown up depiction of autistic sexuality.

What are some things you'd like the media and other people to stop saying about autistic people?

I'll give a specific example as a way of making a broader point. One description I run across a lot is, “Autistics can be extremely literal; because of this, they may not be able to understand the nuances of humor.”

This was true in my case ... when I was a kid. But as I grew up, my understanding of language and humor grew with me. My appreciation for humor might still be different from others, but I'm no longer literal-minded, confused by it.

That's just one example. So much of what people say about autism is wrong ... not due to specific inaccuracies, but because autistics change. Autistics have minds, minds that develop and grow in reaction to life experiences. So I wish people would stop saying things that pin autistic traits to a wall and imply they are permanent. They're not. Autistics can have nuanced, complicated relationships with humor, empathy, social needs and so on.

If you could change one thing to make the world more friendly to autistic people, what would it be?

Redact all of the bad info about autism that has accrued over the years ... all of the negative stereotypes, junk science, the snake oil cures. Basically, if it were possible to remove the prodigious amount of autism misinformation, it would go a long way to making this a better world. It's not realistic to expect that, but (at least in my mind) the question leaves room for magical abilities ... this is how I would use them.

Spreading awareness is hard. But it's even harder when you have so much bad info to work against. The real problem is that people are aware of autism, they're just aware of stereotypes and misinformation. A more realistic way to accomplish this is probably through the sharing of personal stories ... through the spread of books and blogs and articles by autistics. That is happening more and more. It makes me hopeful.

Thursday, April 24, 2014

Autism Acceptance Month 2014: Jason Ross

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with Jason Ross, a self-advocate who thrives on empowering others. Please read, listen, and share.

What are some things you like people to know about you?

I run Self-Advocacy/Empowerment meetings part-time, helping many people who are autistic, have developmental disabilities, ID, or mental health issues. These people who are residents and day habilitation consumers in New York City feel that they have a voice and the same real choices that everyone else has. I create presentations every week, and curriculum that I try to get everyone to follow to help create a sense of worthiness for everyone. Empowering others really empowers not only them, but myself as well. I also run the Adaptations Facebook page for the JCC in Manhattan part-time.

Every year on Autistic Pride Day, June 18th, I run my Autistic Artistic Carnival on www.drivemomcrazy.com.  I can't wait to see what this year's 5th Annual Carnival will show to society. I create my own art and write stories too! I admire my dog, Skyler the Maltese dog who is fearless in nature. I have many struggles as an Autistic person.

What are some things that make you happy? Why?

I really feel happy when I have helped people along the way on my path of helping myself. I also work to try to change society's perception of the disability community, because it makes me feel I am making a difference, though, I get frustrated when I can't really help others right away.  I just keep on moving forward to help people and do the things that I love to do!

I also feel happy when I organize my life, and can feel satisfied by deep pressure on my body when I need it.

What are some things you avoid whenever possible? Why?

I avoid crowds as much as I can, and loud noises, like sirens, firecrackers, popping balloons, and lighting that hurts my eyes. I have multi-sensory issues that affect my every day living and it makes me feel upset when people insist I have to do certain things when my sensory issues become bothered. I also do not like soft touch and avoid this as much as possible. However, I have had to compromise for society because many people have insisted I need to be around certain things. So, I cover my ears, but probably will need to invest in excess noise canceling headphones soon. I also do not like confrontations, but realize sometimes it's necessary to allow others to know what you are saying in a gentle, non-assuming way that others will understand.

What features does your ideal living space have, and why?

My ideal living space is living in an area where I can drive my car to get to where I can go, but have easy access to using a train to get to the urban areas when necessary. I prefer living in the country rather than the city, but the meaningful work I do is in the city. I would love to live in a space where I can organize myself easily, and post on a bulletin board on my wall reminders for what I need to do each day. I need many different types of support in my living space. I would love to one day own a house in the Negev Desert in Israel because of the quiet, serene, simple, natural beauty of the desert. For now, I am living at home with my parents which is ideal enough until it's time for me to move on.

What are your favorite books, movies, and/or TV shows?

My favorite TV show is Ghost Whisperer (on NetFlix) and many people say I should get into Game of Thrones since it's right up my alley, and I love looking up on the internet about The Walking Dead series. I've only seen season one. I have been leaning towards reading the comic book series instead because it's the original version of The Walking Dead. My favorite books are Common Sense by Thomas Paine, and I'm loving the book called When God Winks, by Squire Rushnell, and No Pity, by James P. Shapiro. My favorite movies would have to be 12 years a Slave, 2001: A Space Odyssey, and Frozen. I love listening to the song Let it Go, by Idina Menzel.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

A more diversified sense of Autistic life. For example, I wish there were more media attention on the fact that many Autistic people live independently, with life-fulfilling experiences in the world. This would attract Autistic people to live with dignity, independence, and with the same supports many others get from society.

Showing how Autistic people are included in society is important. I really loved watching "Ghost Whisperer, Season 2, Episode 4 because it showed two Autistic people that were living together independently and almost showed a perfect example of Autistic life. Though, there were some glitches with that too, because the main character and the husband said things that led to society fearing autism. I really feel they should be showing how Autistic people are Human just like Neurotypical people, instead of showing us like we are robots, unemotional, and/or can't do much. We are a living example of the fact that we do get it, we just take time to actually do it. Once we do get it, do it, we perfect it better than Neurotypicals would have ever done it.  If the media shows Autistic people need the support, but can be independent at the same time, it will start changing society's perceptions.

What are some things you'd like the media and other people to stop saying about autistic people?

The media needs to show that Autistic people have just as much potential as Neurotypical people do, we just need more support sometimes. They need to stop convincing society that being Autistic should be feared. I hope the media stops sending out messages that Autistic people need to be cured, like we are a disease and wrong for society. The media's message creates a sense that Autistic people are unemotional, not empathetic, needing constant attention, and not able to grow like Neurotypical people do. We are Human too, and we have every right to live with self-determination,  just as anyone else does and is capable of. We may be disabled, but we are not less than Human. Self-Determination is not a privilege, it's a right! Plus, we are not always egocentric, and ego-centrism is a Human trait sometimes, not an Autistic one. We are trying to cope with Neurotypical standards in society which were developed over hundreds of years because of a perception that disability is wrong in society. Who is is to say disability or being Autistic is wrong? Being Autistic is a part of Humanity we all need to embrace. The media needs to realize that in Humanity, everyone lives to be the person they AUT to be.

The media pushes society away from the mindset that Autistics have our own space, have our own way of doing things, and have our communication to express ourselves to the world. The media needs to learn that Autistic culture exists like any other culture does! The media needs to understand that Autistic people are not, by any means, broken, evil, or not a part of the Human race. Humanity is a part of what makes all of us one in nature. So, let's stop fighting. Let's stop hurting each other, and let's begin a beautiful society the world needs now!

If you could change one thing to make the world more friendly to autistic people, what would it be?

Allow everyone to be non-judgemental and accept ALL people and animals in nature, so anyone can live their life with the potential they have to fulfill their life's mission. Everyone does not have the same mission, and not everyone will live their life the same way, but everyone lives to work hard with support from people around them. Every Autistic person needs to be allowed to stim if they want, repeat things when needed, or express themselves about what we want and need (not what Neurotypicals want and need from US!)  Every one, including Autistic people, need to be Brave enough, like Sara Bareilles says in her song, and no one should be afraid to speak their mind to get their point across when necessary, by using the communication we each feel most comfortable with.

Every voice counts in the world, Autistic or Not, so people who try to influence Autistic voices should not be tolerated. We all make up society, so let's make a society that the world and the universe could be proud of, by showing interdependence throughout the world. ACCEPT!

Wednesday, April 23, 2014

Autism Acceptance Month 2014: Matt Friedman

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with Autistic artist Matt Friedman. Please read, listen, and share.

What are some things you like people to know about you?

I self-identify as autistic, and am happy to remain so. I work as a grant writer for a national nonprofit organization serving children in poverty. Besides raising funds, I also record and categorize all donations we receive. It’s a role that’s well-suited for my systematic mind. My employer knows I am autistic and lets me know how much my talents are appreciated.

Superficially, people would describe me as quiet, polite, and intensely private. Those who care to look beneath the surface have an inkling of my strong convictions, passions, and irreverence. Peer pressure is nonexistent for me. I prefer to be liked, but I’m quite accustomed to being “that odd fellow who makes us all a little uncomfortable.” I also like to draw cartoons.

What are some things that make you happy? Why?

I enjoy cooking adventurously. New and unusual flavor combinations excite me. I like to make exotic, yet comforting food: savory waffle dishes, hot and spicy stews with cold toppings, and foods with fun names, like bibimbap and shakshuka. I’m not an overly talented chef, so cooking for one takes the pressure off. But I’m pleased to say most of my experiments turn out well.

Every week I draw a new cartoon I’m happy. I’m in my fifth year of doing my webcomic [www.DudeImAnAspie.com] with the obvious topics long since exhausted, so to keep going has meant learning how my creative process works, and how to find inspiration in unexpected places. Each week I start with a blank page and try to fill it with something uniquely my own. If I can find something that demands to be said, and translate my vision to paper, then I’ve done something worthwhile for the week.

What are some things you avoid whenever possible? Why?

My peace of mind and well-being come first in all I do. To that end, I seek to minimize chaotic and unpredictable elements, the source of which is often other people. I shop at stores that are uncrowded. I drive the back roads that have less traffic. I go for walks in quiet, natural settings, where I’m unlikely to see other people. I avoid the news. I also avoid travel, because it’s a maze of decisions and logistics, but I hope to find a workaround for that, because I’d like to experience new places.

What features does your ideal living space have, and why?

My home is the only place I’m truly at ease. My house is far from ideal for me, but once I’m settled I don’t like change, so I’ve been here ten years and counting. My furniture and material things are minimal. I have plants but no animals. Some of my walls are painted bold colors. My computer room is jungle green, which makes a serene space. My ideal home would be far out in the country with open space, but with access to all the comforts of civilization. And I’d probably thrive in a climate without a real winter.

When I’m working, my ideal space would be free from distractions, because my job demands careful focus. I work in an open office with no walls and no doors, which is a challenge, to say the least. I prefer not to listen to others’ music, have others control the temperature, or have others sitting or conversing in my proximity. However, today’s workplace requires compromise, and at times sacrifice, for the good of the team. I think any open plan office should include a dedicated quiet space. Quiet should always be an available option.

What are your favorite books, movies, and/or TV shows?

My current obsession is Breaking Bad. I came to it very late, and very unintentionally, because it’s a drastic departure from my usual tastes. I’d say that I’ve found my own inner Heisenberg. And that’s a good thing, stay with me … being autistic means life pushes you around, a lot. If you’re going to survive, there are times you need to act decisively, be a hard-ass, and look out for yourself above others. I think self-advocacy is a lot like that. Furthermore, many of us on the spectrum have times we don’t like ourselves very much, so we fantasize about being someone else, who doesn’t have the problems we do. It’s a thrill to cheer on Walt as long as things go well, and then when all hell breaks loose, we can say, “Okay, maybe my old boring self isn’t so bad.”

My musical tastes have also undergone a recent metamorphosis. When I have music on, it’s either classical, chillout, or ambient. I found myself craving something different in music, whatever unclutters my mind and distracts me from everyday anxieties and concerns.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

Too many movies portray white male Aspies, with a dead relative as a catalyst for their quest for “independence” or whatever. My favorite autistic movie character is Nick in White Frog, who is Asian. That movie is great because it spotlights lesser-known autistic traits, like persistence, and the pursuit of truth, more so than special interests and talents. Sonya Cross on The Bridge generated positive awareness, and thoughtful discussions about autism in the review comments. Some people say Lemongrab on Adventure Time is autistic, but I don’t see it. I think he’s just a nut.

What are some things you'd like the media and other people to stop saying about autistic people?

My blood boils whenever I see an anti-vaccination spokesperson given a platform under the guise of “autism awareness.” Their movement is a public health threat, and we cannot ignore them; we need to call them out on their B.S. There’s a lot of fear out there about autism, and for some people, that fear is bigger than the risk of infectious, potentially fatal disease. It seems impossible to even begin a dialogue with them, but as a starting point, why are they so afraid of autism? Imagine if we could just get past that fear.

If you could change one thing to make the world more friendly to autistic people, what would it be?

I feel that most people are fundamentally on a different wavelength from me, so that we’re incapable of completely connecting. Many autistic people experience this devastating disconnection, feeling “alone among others.” Many of us turn to escapism to make it through each day, through video games, or role playing, or internet communities. I think these things make good distractions, but poor substitutes for human companionship. We do have a need to belong, to form emotional bonds, to relate to others on more than a superficial level, yet we can’t find these things by traditional avenues. I hope people know large numbers of us have these unspoken, unmet needs, and maybe new mechanisms will arise to meet those needs.

Tuesday, April 22, 2014

Autism Acceptance Month 2014: Nick Walker

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with Autistic scholar, educator, and aikido teacher Nick Walker. Please read, listen, and share.

What are some things you like people to know about you?

Generally, the first thing I like people to know about me is that my wife and I run a lovely aikido dojo called Aikido Shusekai, in Berkeley, California, with a very sweet and friendly bunch of students. I like people to know this about me because my wife has pointed out to me that the more people know about the dojo, the more likely it is that potential aikido students will hear about us and come train with us. This makes sense to me. My wife is wise. Also beautiful.

I like people to know I have a blog called Neurocosmopolitanism. I don't have time to write blog posts very often, but when I do, I want people to read them, so I like people to know the blog exists.

I like people to know I'm Autistic. I like people to know this because the mainstream discourse on autism focuses almost exclusively on Autistic children, and tends to erase Autistic adults. On the rare occasion that you hear about a real live Autistic adult on television, 99 percent of the time it's Temple Grandin. If visitors from another planet tried to learn about autism by watching a random selection of daytime talk shows and TV news programs, they could easily end up with the impression that the entire Autistic population somehow consists entirely of millions of children and one woman in her sixties.

The invisibility of real live Autistic adults in the mainstream discourse is of course harmful to us Autistic adults. It's also harmful to Autistic children and their parents and other caregivers, because it creates a scarcity of role models, a scarcity of examples of possibility. Young Autistics, just like all young people, need role models to inspire them to recognize and pursue their own potentials. And non-Autistic parents with Autistic children can also benefit from learning the stories of Autistic adults. This is especially important because certain unscrupulous organizations and individuals, motivated by prejudice and profit, have created a societal narrative of fear around autism. It's almost impossible for non-Autistic parents of Autistic children to resist the fear if they have no positive models of what Autistic adulthood can look like. So making myself visible as a thriving, happy, flamingly Autistic adult is an act of resistance to being erased, and it's also of potential benefit to younger generations of Autistics.

My visibility as an Autistic also helps to widen people's awareness of the range of Autistic diversity and Autistic potential, because I violate so many of the popular stereotypes about Autistics. I've encountered a few books about autism that list good potential occupations for Autistics, and they never list anything like the stuff I do. The teachers and counselors and so-called "experts" do their best to steer us away from occupations that require qualities like empathy, warm human contact, compassionate leadership, joyful physicality, engagement with the realms of myth and metaphor, or openness and sensitivity to the profound ambiguities of the human psyche and the human spiritual condition. And then our lack of involvement in such occupations is pointed to as proof that we lack those qualities. So I like people to know that my entire life revolves around activities that require such qualities, and that my career success is due to the fact that those qualities were always part of my neurological potential, and the fact that I chose to explore that potential despite being told that I lacked it.

What are some things that make you happy? Why?

If I had to boil it down, the thing that gives me the most pleasure is process of emergence -- the process of transformation by which something complex, original, and wondrous emerges from a bubbling chaos of potential. You can see emergence at work when a flock of birds who've been randomly pecking about on the ground spontaneously organize themselves into a perfect flight pattern as they take wing. Starlings, in particular, do this magnificent thing called a murmuration, where thousands upon thousands of them make these shifting three-dimensional shapes in the air. I love watching waves emerge from the ocean, or following the emergence of an intricate story from the confluence of multiple characters and plot threads.

I take especial delight in this process of emergence as it occurs in people. I have spent my life fascinated by processes of personal evolution and transformation - by the ways in which individuals blossom, the magical moments in which a person's hidden potentials for beauty, brilliance, courage, wonder, grace, and goodness become manifest. This joyful fascination has been the central driving force in my life; my entire career, in aikido and in academia, has emerged from it and exists in service to it.

As to the question of Why ... who knows? The heart wants what it wants. I have a personal fondness for quasi-Buddhist explanations involving the idea that each soul incarnates with a mission to learn a particular set of lessons. But that's fanciful speculation on my part, and I don't pretend to any certainty.

What are some things you avoid whenever possible? Why?

Police. Urban police forces seem less and less like public servants and peacekeepers these days, and more and more like the brutal footsoldiers of an occupying military force. It's generally a good idea to avoid militarized gangs that feel they have a mandate to control the behavior of others through violence, and that are virtually immune from prosecution. And being Autistic is a bit like being Black, in that it significantly increases one's chances of being murdered by police, as well as the chances that the police will get away with it.

What features does your ideal living space have, and why?

Enough open floor space to move around, pace, stretch, and play. Lots of natural light. A reasonable amount of privacy. Clean running water. A shower. Space for my desk, computer, and books. A location in a pedestrian-friendly area where I can easily walk to good food sources, pleasant outdoor spaces, and public transit. People I love. A good community around me. Why? That's just the sort of environment in which I've found that I'm happiest and most productive.

What are your favorite books, movies, and/or TV shows?

There are so many books and movies I love that I can never manage to list all of my favorites. I love a good, well-told story. Generally speaking, I love stories in which that quality of emergence shows up in particularly artful and engaging ways. Good stories of transformation, awakening, redemption. Dr. Seuss's I Had Trouble in Getting to Solla Sallew was an early favorite that played a big role in shaping my outlook on life.

I also like artful intricacy and complexity in a story -- as I mentioned earlier, one manifestation of emergence that I enjoy is the emergence of a complex story from the confluence of multiple characters and plot threads. Or, more subtly and even more pleasingly, the emergence of coherent, resonant themes. Italo Calvino's Invisible Cities is a favorite book of mine which is constructed around this latter sort of emergence.  

As you might imagine, I especially enjoy stories in which emergent transformation and redemption in one or more characters, and the emergence of complex plots and/or themes, are combined. The novels of Michael Chabon are good examples of this, or, in the realm of graphic novels, Alan Moore's Watchmen and Neil Gaiman's Sandman. And Holes, by Louis Sachar, is a shining example from the genre of children's literature.

In film, I love these same qualities, combined with rich, vivid, dreamlike visual aesthetics and artful use of color and visual themes. A few of my favorites that come to mind at the moment are Repo Man, Miller's Crossing, O Brother Where Art Thou, The Imaginarium of Doctor Parnassus, and my friend Antero Alli's indie cult film To Dream of Falling Upward (in which I appear in a minor role as an inept henchman). I also enjoyed the heck out of Joss Whedon's Avengers film. And Frozen, which I recently saw with my daughter. When I was a little kid, my favorite film was Yellow Submarine.

These days, I tend to enjoy good TV shows more than films, because the series format allows for more long-term development of plot and themes, and more evolution of the characters. Game of Thrones, Agents of S.H.I.E.L.D., and Community are the shows I'm most into at the moment. I'm completely uninterested in shows in which the characters don't evolve in any significant way. Like I said, I love stories of transformation and redemption. Joss Whedon's work often appeals to me for that reason. I enjoyed Buffy the Vampire Slayer even though I found Buffy herself to be an unappealing character; it was Spike's character arc, the long journey from monster to hero, that kept me interested.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I'm hardly the first Autistic person to remark on this, but often the best Autistic characters are the ones who weren't specifically intended by their creators to be Autistic, or at least whom their creators never explicitly state to be Autistic. Most non-Autistic authors, when they set out to create a specifically Autistic character, end up just stitching together some Frankenstenian patchwork of stereotypes, rather than a coherent, nuanced, realistically complex human to whom an actual Autistic could relate. So I suppose that the one Autistic experience I'd most like to see more of in storytelling is the experience of being an actual human, a continually evolving person with a subjective viewpoint and inner experience as rich, real, and valid as anyone else's.

Most Autistic characters in popular culture are still constructed around the insulting false dichotomy of "high-functioning" versus "low-functioning" stereotypes. An Autistic character is likely to either be the "aspie" stereotype: the comically quirky, emotionally-detached super-genius who speaks in a highly articulate fashion at all times, and is able-bodied and more or less independent; or else the "low-functioning autism" stereotype: lacking any comprehension of the world around them, largely unable to communicate or to connect meaningfully with others, in need of constant care and supervision, and constantly exhibiting behaviors that neurotypical society understands to be "tragic," like rocking, flapping, twitching, twisting, grunting, keening, shrieking, head-banging, and self-injury. But real Autistic human beings don't fit neatly into these made-up stereotypical categories. I know non-speaking Autistics who need help with everyday tasks and who exhibit most of the outward traits associated with the "low-functioning" stereotype, who are brilliant writers and poets, powerful activists, and good friends. I know accomplished scholars and professors with successful academic careers and multiple publications to their names, who rock, flap, twist, twitch, grunt, and head-bang. So I'd like to see popular culture move beyond the stereotyped false dichotomies, to portray the full range and complexity of Autistic experience. I'd love it if the next ultra-observant Autistic super-detective featured in a TV series was a warm-hearted, visibly-disabled, non-speaking poet like Amy Sequenzia, instead of yet another emotionally-detached, coldly logical, able-bodied "aspie" stereotype.

Another thing I'd like to see is more diversity among Autistic characters. The Autistic characters in American film and TV are almost all white, and mostly on the young side. Remember the TV show Alphas, about a team of crimefighters with minor superpowers? I thought that show's portrayal of the teenage Autistic team member was pretty good, for the most part. But it annoyed me that he was a white male, because I suspected there was no good reason for that choice except that it was the default cultural stereotype. No good reason the Autistic teenage character couldn't have been Black and female - and it would have been far more interesting, because of the violation of stereotypes, and because the geeky teenage Autistic white boy trope is already so familiar, and we haven't seen nearly enough representation of non-white Autistic experience. 

What are some things you'd like the media and other people to stop saying about autistic people?

I'd like to see a complete shift to the language of the neurodiversity paradigm. Neurodiversity, for those readers who are unclear on the meaning of the term, simply means the diversity of human brains and minds. The neurodiversity paradigm is a perspective that recognizes neurodiversity as a natural and valuable form of human diversity which should be considered as similar in many ways to other forms of human diversity, such as racial diversity, sexual and gender diversity, and cultural diversity.

So what a shift to the language of the neurodiversity paradigm means, primarily, is that whenever one talks about Autistic people, or about members of any of the other neurocognitive groups that make up our neurodiverse species (e.g., neurotypical people, dyslexic people, bipolar people), one should use the same sort of language, the same sort of grammatical constructions, that a decent, cosmopolitan, non-bigoted person would use to talk about members of an ethnic group, gender, or the like.

In other words, if it's not acceptable among decent, non-bigoted people to talk about Black people, white people, Jewish people, Albanians, women, men, gays, lesbians, or heterosexuals in a certain way, then don't talk about Autistic people that way, either.

For instance, it's not considered acceptable, except among the most ignorant and repugnant of bigots, to refer to a person's ethnicity or sexual orientation as a disease, disorder, illness, or "condition." So it's time to stop using those terms to refer to autism, too. The term "ASD" -- which stands for "Autism Spectrum Disorder" -- should never be used, or regarded as acceptable, by any decent person.

Inevitably, some people are going to respond to all this by saying, "But I've seen some Autistic people use these terms!" Well, so what? Yeah, internalized oppression happens. It plagues Autistics like it plagues any other oppressed minority group. The fact that some people have internalized the bigoted language that's used to oppress them, doesn't make it right or acceptable to use that language. Just the opposite, in fact. When we see young members of ethnic minority groups using ethnic slurs to describe themselves and one another, that's not an indication that these slurs should now be considered acceptable for everyone to use - it's an indication that we should work even harder to eradicate such degrading language, so that future generations won't internalize it the way so many members of past and present generations have.

I'd also like to see people stop calling autism a "difference." That's one of those insidious ways of speaking that sounds like it isn't prejudicial, but actually is. A difference from what? To call autism and other minority neurocognitive styles "differences" is to imply that neurotypical is the default standard against which it's natural to measure everyone else.

And I'd like to see the eradication of the use of functioning labels -- "high-functioning" and "low-functioning" -- to describe Autistics or any other human beings. What exactly to we mean by "functioning"? In practice, when people say "high-functioning" and "low-functioning," they generally seem to be using the term "functioning" to mean "conforming to dominant neurotypical social and cultural norms, standards, and demands." But do we really want to buy into the assumption that such conformity is the proper "function" of a human being?

I propose that instead of rating human beings as "high-functioning" or "low-functioning," we apply the terms "high-functioning" and "low-functioning" to societies, rating the functioning of a society according to the degree to which it succeeds in supporting and furthering the well-being of all of its members; and the degree to which it can accommodate and integrate diversity, and employ diversity as a creative resource, without attempting to reduce or eliminate it, and without establishing hierarchies of privilege.

If you could change one thing to make the world more friendly to autistic people, what would it be?

A large-scale societal paradigm shift, from the currently dominant pathology paradigm to the neurodiversity paradigm, would be a good start.

Monday, April 21, 2014

Autism Acceptance Month 2014: Tom Stratton

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with high school student Tom Stratton. Please read, listen, and share.

What are some things you like people to know about you?

I try to enjoy things and see everything from the brighter side. When I like something, like a topic or a hobby, I love it and when I talk about it or do it, I reach a level of happiness that is amazing. People tend to see me as a laid back type B person and a joker, mostly because I tend to joke around in school and with my friends. I like to be the center of attention and I’ve learned that by making people laugh is the best way to stand out. But I’m actually more of a type A personality. I love having a schedule. Knowing what will happen and when is a big plus for me. I also enjoy when things are nice and neat and organized. But most of all I like making people happy. It’s just little things that brighten people’s days, like when you walk down the street and you just make someone laugh or you give them a high five. My thought is if there’s no harm than why not. The worst thing that can happen is they get a fun story to tell someone else.

What are some things that make you happy? Why?

When it comes to enjoying things I either love something or hate it with passion. One thing that I love is baseball because I’m a huge San Francisco Giants fan and even look a lot like Matt Cain so when I watch them I find sort of a peace. I also love music. One of my favorite pastimes is listening to rap with headphones on while jumping on my trampoline. This is because I love listening to rap because of the lyrics and beats, but when I listen to music I want to move around so that’s where the trampoline comes in nicely. I enjoy telling jokes and goofing off because, like I’ve said before, I love being the center of attention and jokes help. But one of my favorite things, if not my favorite, that makes me happy is food. Oh man it’s great, all of it just food in general is amazing especially junk food like chips, Monster, cupcakes, burgers, fries, burritos, pizza, all of it makes me very happy.

One of the things that makes me feel really happy is uncontrollable laughter with friends. That is probably my favorite because it feels great and makes me forget about everything else. I also just love being alone and relaxed (playing a game, sorting baseball cards or watching TV) because it gives me a chance to just recharge after a long day of school.

What are some things you avoid whenever possible? Why?

Big cities because they’re full of weird smells, a lot of people, lights, and sounds. All in all, it’s terrible. I also try to stay away from change in schedules largely because it takes me some time to get it into my brain that I’m going somewhere and it takes me some down time to get ready. I also just don’t like the sheer uncertainty of it because I don’t like it when things are unpredictable. But other than that I’m ok with everything else because everything else has some sort of plus side that I like.

What features does your ideal living space have, and why?

Well, I would want it to be out in nature or in a small town. I want a place that is close to nature, like the ocean or the woods, but also has a fair amount of people who live there so not a super small town or a big town. I would like to live in a town with a small nice downtown with things to do and not too far from a big city. The house would be quiet and neat with everything organized. I love it when each thing has its own place. I would want my home to be welcoming with a lot of rooms. I would also want a big yard with trees and grass just to relax in during the day to help me get some fresh air and some down time. I would want a swimming pool because swimming has always been relaxing for me. In the house, I would want to have things in it that are fun or funny like interesting artwork, entertaining books, weird tools -- just things that you see and say, “ha ha I like that.”

What are your favorite books, movies, and/or TV shows?

My favorite books are ones with adventure or books that have some comedy. I like to read something that is more of an entertaining read ... something you read in your free time just to relax.

When it comes to movies, comedies and action again take the cake. But seeing that I’m a teen boy, I tend to like teen boy humor like; Harold and Kumar, The Dictator, Borat, The Hangover, Ted, and those types of movies. But some action movies that are on the top of my list are Die Hard, The Rock, Escape from New York, those sort of guy manly movies. There is almost nothing I like more than TV after a long hard day so I like to watch funny shows like; Family Guy, The Simpsons, Impractical Jokers, those ones things that make you feel happy.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I would want to see some autistic characters that seem more like me. After some movies, like Rainman, with an autistic character my friends always ask me why I don’t act like that or constantly know how many toothpicks have just fallen. It takes me some time to explain that autism looks different ways. Rarely do I see a movie or book or TV show that has an autistic character that doesn’t seem autistic all the time -- like what happens in the real world a lot of times. Sometimes with autistic people you wouldn’t always know they were autistic.

What are some things you'd like the media and other people to stop saying about autistic people?

I would want them to stop talking about us like we’re different than other people in a bad way or we’re unlucky to have autism. One of the most common things that ticks me off about that is when people talk about a cure. First of all, it’s impossible because autism isn’t something you can just turn off. It’s how you were born and it will always be a part of you. Second, even if it was possible, autism isn’t a bad thing that should be “turned off.”

If you could change one thing to make the world more friendly to autistic people, what would it be?

I would have people look at autism not as something that is a bad thing like, “oh man he has autism that sucks,” but something that is ok to have or is even a good thing.

Friday, April 18, 2014

Autism Acceptance Month 2014: Jack and Jean

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with autistic parent advocate Jean Winegardner and her autistic son Jack. Please read, listen, and share.

Note from Jean: "I told Jack (he’s almost 11 years old) about Autism Acceptance Month and explained that some people wanted me to interview him about his autism to publish on a website. He was totally on board and even went so far as to dictating the punctuation I typed as he answered. In case you couldn’t figure it out, he’s super into cats these days."

What are some things you like people to know about you?

I love cats. And I think they are cute.

What are some things that make you happy?

Well, I was thinking about kittens and they make me happy because I love cuddling with them. Also my friends because I like playing with them.

What are some things you avoid whenever possible? Why?

I. Avoid. Any. Means. Of. Losing. My. Cat.

What features does your ideal living space have, and why?

I would have anything I would want such as a plasma TV and a guinea pig cage and playhouse. I want a treehouse with a helicopter pad and elevator.

What are your favorite books, movies, and/or TV shows?

My favorite movie is The Lego Movie. Oh, and also Spaceballs. (I like the part where Dark Helmet says, “I knew it. I’m surrounded by A**holes!”)

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I would like to see them because I want to know if they have cats.

What are some things you'd like the media and other people to stop saying about autistic people?

Stop staying losing cats is no big deal.

If you could change one thing to make the world more friendly to autistic people, what would it be?

To delete arliophobia, allergies to cats, and to make more cats.

Note from Jean: "I’m going to be honest here; I’m not sure Jack knows yet about ableism and that some people see autism as a bad thing. These are definitely things he needs to learn about, but I think I’m okay that this particular evil doesn’t live in his life yet. For now, he’s mostly concerned about injustice toward cats. Also, I can’t find a definition for “arliophobia” anywhere, but Jack says it is 'fear of cats.' I answered these questions too, but my answers are way less fun."

What are some things you like people to know about you?

I live in Maryland with my husband and three kids (one of those is Jack, whom you met above). I got my autism diagnosis a couple of years ago and have been proud to try to be a positive, autistic role model for my kiddo since then -- although, honestly, a lot of the time, he’s a positive, autistic role model for me. I like to laugh. I hate confrontation. I have a really hard time stepping into arguments when I’m not with my safe people, but I have the utmost respect for those who can and do in order to stand up for what is right. My family is the most important thing in the world to me. Like Jack, I enjoy cats. (We have three.)

What are some things that make you happy?

Running. Furry animals. Sitting with pillows and blankets on top of me. My kiddos and my husband. Reading. Naps. There are a lot of things in this world that make me very happy. I struggle with depression a lot, but it is so nice to know that there are a lot of very good things in this world.

What are some things you avoid whenever possible? Why?

I have a lot of sensory aversions, so there are a whole slew of things that I avoid, a lot of which are tactile and auditory. I also tend to avoid one-on-one in-person conversations with people that I don’t know well. That’s maybe the most stressful social situation for me. I avoid phone calls when at all possible; I don’t think I’m alone here.

What features does your ideal living space have, and why?

I like a lot of natural light because it makes me happy. I would love a lot of cushy sofas with pillows and blankets everywhere. It would also be warm. Maybe if I could get that helicopter pad and elevator from Jack’s treehouse, that would spruce the place up too.

What are your favorite books, movies, and/or TV shows?

I’m into zombie books (World War Z), movies (Shaun of the Dead), and TV (The Walking Dead). I love science fiction, but I’m open to trying most anything. My favorite book that I’ve read recently is The Martian by Andy Weir. It was so exciting! You should read it. I think Battlestar Galactica (the newer version) and Breaking Bad are two of the best TV shows I’ve seen. I love Doctor Who as well; I am always surprised by how much that show affects me. Dr. Strangelove is my favorite movie, but the Lord of the Rings movies come in a close second.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

It’s at the point that I grimace when I find out that the book I’m reading or the movie or TV show I’m watching has an autistic character. It’s almost never good. At this point, I don’t even know what I want to see. All I know is that I am not seeing it. I do know that when I asked my son Jack this question, I saw his eyes light up at the thought of autistic characters and I felt sad about what he would see if I showed him current media examples. That should change.

What are some things you'd like the media and other people to stop saying about autistic people?

I would like to see less infantilizing of autistic people from all over the spectrum. I would like to see the media acknowledge that there are challenges to being an autistic person and in raising autistic children without spreading the message that we and our children are tragedies to be fixed. All life is hard. Why is it that autistic life is the kind that is pathologized?

If you could change one thing to make the world more friendly to autistic people, what would it be?

Easy. Accept that all people have intrinsic worth. Understand that no one has to act or communicate a certain way to be worthwhile. Don’t pity us; treat us as the complicated, incredible human beings that we are—just like the rest of humanity.

Thursday, April 17, 2014

Autism Acceptance Month 2014: Lynne Soraya

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with autistic advocate Lynne Soraya. Please read, listen, and share.

What are some things you like people to know about you?

I always struggle with these types of questions. I am an adult woman on the autism spectrum. Evenings and weekends, I am a blogger for Psychology Today. I am the author of a book for teenagers and young adults on the spectrum called Living Independently on the Autism Spectrum. By day, I work for a Fortune 500 company in the midwest.  I am married and have three grown stepsons. They are all neurotypical.

What are some things that make you happy? Why?

I love music. It’s a legacy from my father’s side of the family. My paternal grandmother was country music singer and musician. My father, whom I also strongly suspect was on the spectrum, didn’t have the same drive to make music but he inherited her love for it just the same. It became his special interest. Growing up, he seemed to know everything there was to know about music. It became his language and way of communicating to the world, and was one of our primary ways of connecting with one another.

That continues today. Music has become a cornerstone of my own life. I married a man who loves music, and what brings our family together is largely music. When my husband and I got married, my stepsons insisted on being the band. They all play. When I’m stressed and need to relax, I sing. When I’m reaching a meltdown point, sitting in a dark room playing soothing music is something that always calms me. I don’t know what I’d do in a world without music. 

I am also very involved in advocacy and inclusion efforts on many different fronts. I enjoy learning about people and helping people. I’ve gone through a lot in life, but I also am amply aware of how lucky I have been. I’ve had some wonderful mentors and teachers who have made a huge difference in my life, and I try to honor their investments in me by doing the same for others. I like to think I succeed, but one never knows. I’m my own worst critic. 

I also love reading, writing, and learning new things. Life is an adventure, and I’m very happy to live it!

What are some things you avoid whenever possible? Why?

Whistling. It’s like an icepick to the ear. I also find it very difficult to be around people who exclude others or look down on people who are different. In this world, nobody’s perfect, and everyone has some biases. That’s part of human nature. But what I really have a hard time with is people who hear, but don’t listen. I think the world is about empathy. It’s about hearing others’ experiences, and really letting it sink in.

Especially in the area of advocacy, a soft heart and open mind are essential. At the same time, it’s crucial to protect yourself from burnout. It’s not an easy balance to make. What it means for me is sometimes picking my battles, and not going into a war zone if I don’t have the energy to put my armor on. I’ve had to learn that this is OK sometimes. We each have our own boundaries.

What features does your ideal living space have, and why?

Oh, I could go on on this topic for hours!! I love design and I’m a huge techno-geek. First of all, I really struggle with the executive skills necessary for getting organized, but I really like being organized. Ideally, I’d love for my house to look like something out of a home magazine, but I struggle to make that happen. It’s a frustrating little contradiction of my existence. So, I’d love to have someone, like a professional organizer, come in and help me build an organizational scheme that works and that I can easily keep up. It’s not something that’s currently within my reach, but I can dream.

Second, my ideal living space would be completely e-connected. The way I keep myself productive and organized in my work life is through technology. Time management software, project management software, note-taking software, etc. I’ve found it a little more difficult to adapt these coping techniques to my home life. Smartphones have been a step in the right direction, but haven’t gotten me there all the way. 

I’d like to have screens throughout my home networked to time management software that will remind me when I need to something. Networked appliances that send e-mails, tweets, or texts when they’re ready to be unloaded would be right up my alley. Being able to remotely check if I’ve closed a garage door, locked up the house, or turned off key appliances would eliminate so much anxiety in my daily life.

From a social standpoint, I’d prefer a home that’s sheltered from my neighbor’s homes. I often find it difficult when I go out in the yard, and neighbors try to talk to me. That kind of unstructured socialization is difficult and stressful for me, so in an ideal world, I’d have a fenced yard that would allow me to engage with the neighbors on my own terms, when I’m up for it, rather than just whenever I go outside. 

The last piece that I would want in a home environment would be color and beauty. Just like I love music, I love color. My mother and brother are both artists in different mediums, and I’ve always shared their love for art and artistic mediums. I don’t get much time to draw, paint, or sculpt anymore, so designing my environment has become my outlet for that artistic drive.

What are your favorite books, movies, and/or TV shows?

I love sci-fi. Star Trek especially. Data is my favorite character. A lot of my friends actually call me 'Data.' I enjoy The Big Bang Theory, although I like the earlier episodes more than the later ones. It seems that they have been taking Sheldon farther and farther into stereotypical territory, and playing more and more of his traits for laughs in a problematic way. 

I didn’t mind when they treated him as an odd, but quirky equal, but I really don’t like it when they begin to treat him as broken and bad. There’s a really fine line, that I can’t quite put my finger on, but it seems they keep dancing closer and closer to it. Beyond that, I don’t watch much live TV any more. I watch old movies, documentaries, or reruns on Netflix.  

I read books by the boatload, of all kinds. I read a lot about autism, especially books written by others on the spectrum. I also like books about science, religion, sociology, psychology, medicine, and history. As far as fiction goes, I especially liked the Earth’s Children series by Jean M. Auel, and the Pillars of the Earth by Ken Follet. Michael Crichton was also a favorite. 

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I’d like to see more diversity in the way autism is portrayed.  The more we highlight the different ways autism can appear, the more we whittle down the stereotypes that exist. The other thing I’d love to see is more stories about autistic people written by autistic people themselves. Too many of the books I’ve read, or the shows I’ve seen, suffer in accuracy because the writers are writing from an outsider’s standpoint.

I think this is a particular danger with regard to autism because in so many ways, what a neurotypical observer thinks they see on the outside often really isn’t what’s going on on the inside. At the very least, writers should have input from autistic people during the writing process. You can very easily tell when a writer’s perceptions about autism have come second-hand, from books, magazines, research, or other media. These kinds of protrayals come off like someone ran down a checklist of symptoms and checked every box. There is no nuance, no contradictions, no challenging of accepted assumptions. It’s very shallow.

What are some things you'd like the media and other people to stop saying about autistic people?

I’ve become very weary of the talk about theory of mind and empathy.  It’s a huge double-standard that seems to blow past so many people. I think Rachel Cohen-Rottenberg’s site Autism and Empathy is wonderful, and should be required reading for anyone in the field.

Naturally, anything that prompts violence against autistic people should also go. We need people to see us as neighbors, friends, co-workers, family members, etc. Just people like anyone else. That’s all.

If you could change one thing to make the world more friendly to autistic people, what would it be?

I would want to change peoples’ attitudes. I’ve seen what it can look like when people choose to look beyond their own perceptions to see what’s really there. If we could get the world to do that, the world would be a better place for everyone.

Wednesday, April 16, 2014

Autism Acceptance Month 2014: Dani Alexis

This month we're asking our autistic community members What Do You Want? What Do You Need? We'll be featuring their answers all April long, right here. Today we're having a conversation with autistic advocate Dani Alexis. Please read, listen, and share.

What are some things you like people to know about you?

I'm currently a graduate student in English at Western Michigan University, researching what I'm calling broadly "autism literature, narrative, and discourse." So far, that has meant everything from analyzing the poetic elements of literature by autistic writers to looking at the terrible mismatch between what we say publicly about ourselves and what is said publicly about us. When I'm not at school, I'm usually enjoying time with my husband and our two very spoiled cats and blogging at danialexis.net.

What are some things that make you happy? Why?

Figure skating, which feels like complete mental and physical freedom for me. I'm much more graceful on skates than on "land." While I'm skating, I can't think about anything else, so it's also a great mental and emotional "break" in the middle of all my academic work. I also love spending time in the library: the quiet between the stacks and the smell of books is the safest place I know.

What are some things you avoid whenever possible? Why?

Talking on the telephone, especially with strangers. If I don't recognize the number or I'm not expecting a call, I don't answer. I do the same thing with the doorbell: if I'm not expecting a visitor or a package, I'm not here. I also prefer not to drive -- luckily, my husband enjoys driving, so I can frequently avoid it.

What features does your ideal living space have, and why?

My ideal living space is a university library without the public. I find the smell of the books and their visual and tactile weight very comforting. Most libraries have a great deal of natural light, which I prefer. And there is absolutely no clutter -- everything is (ideally) either organized where it belongs or accounted for in the system. Above all, it's quiet -- not only am I not expected to talk, I am expected to not-talk.

What are your favorite books, movies, and/or TV shows?

Books: Barbara Kingsolver's The Bean Trees, Minrose Gwin's Wishing for Snow and The Queen of Palmyra, Bonnie Jo Campbell's Once Upon a River, Anne Carson's Autobiography of Red ... I could list favorite books forever. I also collect old Girl Scout handbooks; my prized possession is a 1916 edition of the first published handbook, How Girls Can Serve Their Country.

Movies: Compared to most people I know, I have seen almost no films. I love Gone With the Wind for its extraordinary visuals (and in spite of its problematic storyline) and Wit for Emma Thompson's remarkable performance.

TV Shows: I'm currently hooked on Agents of S.H.I.E.L.D.  I will never say no to a marathon of Star Trek or The Simpsons.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I'd like to see more characters who are canonically autistic, but who aren't turned into a plot device or an afterschool special.  I'd especially love to see more (realistic) portrayals of autistic women and autistic people with multiple disabilities.

What are some things you'd like the media and other people to stop saying about autistic people?

I would be thrilled never to hear the words "high-functioning" and "low-functioning" ever again, especially when they are based on someone's ability to produce "normal" speech (spoken, in complete sentences, fits the prevailing neurotypical view of what people are "supposed" to say in the situation, etc). This is language being used as a weapon against autistic people in multiple ways. First, it cuts us all out of the conversation on autism by asserting that autistic people who don't speak "normally" are too "low-functioning" to know what they need and that autistic people who do speak "normally" are too "high-functioning" to be having a real autistic experience in the first place -- both of which are simply wrong. Second, it presumes there is a "normal" or "ideal" form of communication, and that alternate forms are either marks of a pathology or not communication at all.

In my research, I've been particularly captivated by Gayatri Chakravorty Spivak's question about marginalized groups, "Can the subaltern speak?" This seems to me to be a particularly compelling question for autistic people because so much of the discussion around our personhood is predicated on assumptions, not only about our ability to participate (which is what Spivak means by "speak"), but about our ability to actually speak.

If you could change one thing to make the world more friendly to autistic people, what would it be?

I'd normalize a much broader range of communicative forms (speech, writing, typing, sign, pictures, etc.) and content (logical, poetic, etc.) -- but I'd encourage listening above all.