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.