Friday, July 29, 2011

Interview: Alex Plank, Autism's Most Eligible Bachelor

We spent a good amount of time at IMFAR hanging out with Alex Plank and other autism community members and journalists. While many discussions were laced with respectful disagreement, there was one matter upon which everyone agreed: Alex deserves the title Autism's Most Eligible Bachelor. Not just because his kinetic energy and wicked sense of humor are utterly charming, and not only due to the  drive and focus that led to his creating the popular online Asperger's community WrongPlanet.net as a teenager, plus founding Autism Talk TV last year. No, we were just amazed that someone as awesome as Alex is single. Read on, and you'll understand why.

For those who may not know, what is WrongPlanet.net?

WrongPlanet. net is the online community and resource for people with autism and folks connected to them -- pretty much everyone.

When did you found WrongPlanet?

In 2004. I was seventeen, and in high school. It was the summer before my senior year, and I wasn't doing too well in school. I was kind of depressed -- I spend a lot of time online and was refusing to do school work. So I wanted to make a community for people with autism and Asperger's -- the biggest community. And it turned out quite well, I think. It's getting bigger every day.

Yes, it's a huge forum. Is it self-moderated, or have you appointed moderators?

One thing that's great about the Wrong Planet community is that we have volunteer moderators, who work with the community and are very involved with the community -- and whom I pick. If I see someone who would make a good moderator, who follows the  rules and is respectful of other members, then I make them a moderator.

It sounds a bit like Wikipedia, in that it's volunteer but quality curation.

Well, I used to work with the Wikipedia project, before it became famous. When I was in high school, before I created my website, I was a very big contributor to Wikipedia. I edited 10,000 articles, and was a systems operator for some of the wikipedias. I specifically focused a lot on the Civil War and battles of the Civil War: I wrote a lot of the original articles on the Civil War.

What was your connection to the Civil War?

I grew up in Virginia, and there are a lot of Civil War battlefields. My dad is a Civil War buff, so I grew up learning a lot about the Civil War, and we studied it a lot in school. It just always interested me.

You're currently in Southern California. How are you doing, and are you enjoying a change from the East Cost?

Things are great. I really like the weather here. I'm very sensitive to the sun; when it gets cloudy I tend to get depressed. I'm much happier here.

What was the reason for your move from the East Coast to Los Angeles?

I came to work in the entertainment industry. I've worked on reality shows -- on "sizzle" reels, the 5 - 10 minute demos of pilots that get pitched to producers. I'm still doing freelance work, that varies. I've been filming a lot, I've been editing a lot. It's turned out to be a good decision, moving here. I've gained a lot of good connections.

It's great that you're happy, not everyone who moves to L.A. ends up liking it. Sometimes they find the people superficial or preoccupied.

That's one thing I've noticed, but I'm here for a reason. Plus the weather's so great, it doesn't bother me. And sometimes the people are so preoccupied with themselves that they treat people on the spectrum they way they treat everyone else. They're so concerned with how you view them that they don't even consider that you might have autism. In a way, that's a good thing, I guess.

What did you do between college and coming to southern California?

I worked on my website and WrongPlanet.net. I was also living up at John Robison's house, and working with him and his son Jack on our show Autism Talk TV. I started the show out on my own, and then John introduced me to folks from Autism Speaks -- and they sponsored some of our funding.

Some folks with autism aren't happy with Autism Speaks. What's your perspective?

I understand black and white thinking on this issue, as I’m on the spectrum myself. But the fact that they hired a guy with autism is a good first step, better than any other autism organization I’ve worked with. They were also the only ones who offered to sponsor Autism Talk TV, and their sponsorship is completely hands-off. I get to produce the material I want to produce.

Tell us about Autism Talk TV. What is it, what was your inspiration for starting it, where do you see it going?

I started a couple of years ago, because I wanted to have a TV show online, that was the goal. It's become something bigger, we post the videos online and get 1000s of views, which is cool. It's all online, you can see it at WrongPlanet.net.

I do the show with Jack and Kirsten, who are both on the spectrum. We just got back from the Autism Society's national conference in Orlando, and did some filming there. We also made quite a lot of videos at IMFAR (The International Meeting for Autism Research), and we still have some that are ready to be posted. People were pretty psyched about our work at IMFAR. Actually, a lot of people are asking us to film their conferences.

But we're continually improving the show, making it better. I work very closely with my friend Noah, who went to film school with me. We're going to try to pitch it to some TV Networks, and we're working with some folks who've produced network TV before.

How do you decide who you're going to feature on your show?

I just look for people who have an interesting story to tell that's related to autism.

Your Autism Reality short film was made in 2009. Do you still consider it representative of how you feel?

Yes. I give talks all over the country, and I like to show it before I speak -- so I don't have to speak as much!


autism reality from Alex Plank on Vimeo.

In the film, you say it takes a lot of energy for you to maintain a social atmosphere, even with people you know really well. Is this draining for you, right now, giving an interview?

Not really, it's an interview, so it's a controlled structure: You ask questions and I answer them. There's no uncertainty about what's going on, socially, for me. But I do have to think about how I'm going to phrase things more than other people -- I guess; I really have no idea how someone who isn't me thinks.

But in social situations with my peers it's much more difficult, because I have difficulty with the non-verbal stuff as well. Though what's amazing is I'm getting much better at reading people -- I'm really growing in that sense, I have a lot of friends.

In Autism Reality, your parents talked about some difficult experiences you had in elementary school, specifically with a principal who actually had kids sit down with you and tell you what they didn't like about you.

The principal put us all in her office, and we all got to sit at a table, and all the kids got to say one thing they didn't like about me. That was their intervention to stop people from bullying me.

Is the incident an artifact of your past, or do you still think about it sometimes?

I don't think about it much, and I don't think it's at the top of my parents' minds either. I just think about the future, and the present. I don't really focus on the past in that sense. At the same time, being teased or bullied is hard, it still bothers me that that happened.

But I'm not the kind of person who feels like a victim, so I treat it as a learning experience. I treat everything as a learning experience -- the good and the bad. I don't like when people go around complaining. I can understand that they were upset about what happened, but I don't want to do that, personally. It's empowering to not be a victim. 

If I did [go around complaining] I would be miserable. I would start looking at the world in a negative way. I think part of the reason I've been successful is that I look at the world as this really cool thing -- the good and the bad. It just is what it is. When good things happen, I get surprised. When bad things happen, I think about what I could have done to prevent them from happening -- and if I couldn't have done anything, then it's not a big deal.

So, let's talk about your being autism's most eligible bachelor. You've dated before?

Yes. In high school, and in college. Different girls.

What kinds of things are you looking for?

Intelligent, funny, good personality, physically active -- I ride my mountain bike every day. I also like to go out and see movies a lot. Especially Woody Allen movies. I like Woody Allen a lot.

Do you have any dealbreakers?

I don't know what a dealbreaker would be. You can't really know until you meet a person. That seems like common sense to me.

What other kinds of things are you into recently?

I went to a Magicians' Club in L.A. called The Magic Castle -- and I'm pretty sure a lot of the people there had autism. I'm thinking about taking magic lessons.

Do you think you have the underlying skills for prestidigitation?

I think if you practice anything you can do it well. John Robison said something I completely agree with: if you're spending a lot of time at something and you're not good at it -- regardless of autism -- then there's something else wrong. And since you have autism, you're going to be spending a lot of time at what you're interested in -- more than most people. So you're going to have an edge.

----

Alex's sites include www.wrongplanet.net and www.alexplank.com, and you can contact him at alex -@- alexplank.com We suspect John Elder Robison is the only person who can get away with calling him "The Plankster."

Wednesday, July 27, 2011

Special Interests

Katie Bridges
WarriorsOfTheEdge.com

"So, what is your special interest?"

If you put two or more people together who have Asperger's syndrome, the question is bound to come up. Translated, it means, "So, what one single thing have you been focusing on all your life?"

Not everyone with Asperger's syndrome will be able to relate to such a question, but when you take the repetitive nature of this unique group, along with their narrow, restricted interests, and mix that together with an intense curiosity or profound devotion to whatever strikes their fancy, a lifelong interest in one particular subject is often the result. Even more amazing, this special interest typically begins at a very early age.  

Without a doubt, my focus has been on all things futuristic. Robots are a big deal for me, along with architectural designs of a futuristic nature. I could sit and stare at a drawing of a futuristic city all day long. Come to think of it, I have. Even better is having an opportunity to take a stroll through a futuristic city.

You might have noticed that our world comes up short when it comes to futuristic cities. I've had to resort to creating stories so that I can get the "feel" of having visited one. In some ways, it's a better deal because I can control the outcome. I don't want to just build a city, although that would be nice. I want to create an experience involving that city. That's why I write fiction. But there is still that longing inside of me to go to a place with flying cars zipping about in the air and domed buildings dotting the hillside and robots wandering about.

I had my first taste of the future at the age of six. Up to that age, all I knew about life was what I had experienced in the small town of Juneau, Alaska. Juneau has a charm all its own, but it is certainly not futuristic, at least not while I was growing up. It had more of a historic feel to it, with its narrow streets and rough looking buildings, somewhat in the style of the wild west. There were no freeways or skyscrapers. It was a small coastal village.

My mother was due to be remarried soon and before she merged my little sister and me with a new family, she wanted to do something special with just the three of us. And so, we headed off for California to visit Disneyland.

Disneyland is every child's dream. Fantasyland has the greatest appeal for kids, but there is also Adventureland and Frontierland with their fun rides. I'm sure I must have enjoyed all aspects of Disneyland, but those lands are not what I remember in any detail. Instead, I was struck with an overwhelming sense of awe the moment I entered Tomorrowland. That's the place I remember best. For me, Disneyland was all about the rocket and the clean, white lines of the impressive buildings and the wide walkways leading into the city of the future.

I think I must have spent most of my childhood fixated on recreating what I had experienced in Tomorrowland. From my stories, to my drawings, to the way I played, I was trying to build a city of the future.

It was nearly three decades later when my husband took me to Disney World for the first time. Disney World in Florida offers a wide variety of experiences, even more so than what you'd find at Disneyland. But all of that paled in comparison when I discovered Future World at Epcot. When I stepped in to that futuristic world, I felt like I'd found the home I'd been waiting for all my life. There was one particular attraction in Future World that captivated me more than the rest. It was called Horizons. Once you stepped into the moving tram, you were taken into an amazing world. In this place, you got to see how people might live in the future. The scenes involved city life, life in the renovated desert, an underwater city, and a space station. My favorite scene was one that showed a darling home in the city. For some reason, the futuristic living room held my attention more than anything else I saw on that ride. If I could have a house built, it would look exactly like that.

Horizons is no longer a part of Future World. With the future moving in on us from every side, it wasn't long before that attraction became outdated. It was torn down to make room for the next phase of the future. But I've never forgotten Horizons at Disney World. I often tour the ride on You Tube or study the photos online.

When I returned home after my trip, I couldn't stop thinking about that living room. From the curved white couch, you could look out the windows to the space-age city beyond. With images bursting from my mind, I sat down at my typewriter and began to write a science fiction story that took place in that fantastic living room.    

From that point on, every story I wrote had its origins in those scenes. I would often take walks through the woods and think about that living room from Horizons. And then the story would start to flow. So, if you want to know how I began my novel, Warriors of the Edge, that's how. It all began with a living room.

Right after I returned from that first trip to Disney World, I searched for every futuristic drawing that I could find. I rummaged through used bookstores and went to garage sales, always on the lookout for something new. I pinned those drawings all over my bedroom walls. I even added my own drawings to them. I loved drawing pictures of rockets and futuristic buildings.

One day my mother came for a visit. She was admiring my collection of pictures. Then out of the blue she said, "There's something I need to tell you about your father."

It surprised me because she rarely talked about my father. I didn't know much about him. I was separated from him at the age of four and didn't see him again until I was married with children of my own. I'd only had a few visits with him throughout my adulthood, which didn't give me much of a chance to know what he was like.

You might have seen the movie A Beautiful Mind, starring Russell Crowe. My father reminds me a bit of John Nash, the main character in that movie. It's not an exact match, but there are some similarities. My father was obsessed with the study of economics in the way that John Nash was. Whenever I was around my father, he talked endlessly about a great economic plan he had, one that he believed would revolutionize the way commerce was done throughout the world. He never talked about anything else in front of me, just his economic plan. There was a brilliance to him, in the way he could talk circles around people with his original ideas, and yet, not much of what he said ever made any sense. We would just let him talk.

My father was committed to a mental institution when I was four, just as John Nash was. He didn't have imaginary friends, but he did have his problems. No one knew what to do with people like him back then. He was diagnosed with manic depression, or what is known as bipolar disorder today. When my mother went to visit him, the head psychiatrist told her, "Your husband has the highest I.Q. of anyone we've ever tested in this facility." They were so impressed with him that they released him fairly quickly. Obviously, there was genius there, but there was also great struggle. He had trouble holding a job. The social world was impossible for him to deal with. He ended up living a very reclusive life in the wilds of Alaska.

I would be willing to bet that if he was still alive today, he would be diagnosed with Asperger's syndrome. His obsession with economics was surely his special interest. But there was more to him that I didn't know. My mother was about to reveal a great surprise to me.

"Your drawings remind me of your father," my mother said. "He used to spend hours just sitting at the kitchen table drawing pictures of rockets and spaceships and futuristic buildings like that. He was fascinated with the future and dreamed of what he could build for it."

"You're kidding?" I said, wide eyed. "Did I ever watch him do that?"

"Oh, sure," she told me. "You must have been three or four, but you would sit with him, looking on as he drew. It's like you are carrying on his dreams."

It dawned on me where my fascination for the city of the future had come from. I had always assumed it had struck me at the age of six, when I had visited Disneyland for the first time, but that had only reinforced it. I'm pretty sure my special interest began when I was but a tiny preschooler, sitting by my father's side. I've been focused on the city of the future ever since.     

Monday, July 25, 2011

Why is There 30 lbs of Rice in the Bathtub?


Sarah Oriel
planetjosh.squarespace.com

This is a good question. Also one you might be asking me if you had been to my house recently.

You see, my son Josh (we call him Toadie) is autistic and loves all things sensory - movement, pressure, water, visual stim (like laser shows), and anything tactile. Bumpy, sticky, grainy, gooey, stretchy, rough, the list goes on, you get the idea. He adores his swing, but as we live in an area where it rains, a lot- it's not always an option. 

One of the things he loves most is sand. Under and on his feet and hands. The times we've been to the beach on vacation, all he wants to do is walk on the sand. So we did. Endlessly. And if I were Queen of the World and had limitless resources I'd build my Toad an entire sensory house complete with a beach so he could walk in the sand all he wants. But, sadly I'm not Queen of the World (but don't tell my kids!) so my dreams of a magic, indoor beach will have to remain in my imagination for the foreseeable future. 

I did have an idea though. 

Sensory tables can be expensive, and frankly, more hassle than they're worth since much of what you put in/on them ends up all over the place because the kids will bring it out with their hands. And Toad's feet are a huge focal point for him - he can't use his feet on a table. 

He can, however, put his feet in the bathtub. In fact, he can put his entire body in there. Because he would be in the tub, with whatever we put in it, there would be very little mess. The bathtub, it seems so simple now that I think about it. I may be late in figuring this out but to me it seemed like a brilliant plan - if you have a child like mine

First I thought for a while about what, exactly, we should put in there and ultimately decided on rice. Sand is not a great option for a lot of reasons even though you can buy it fairly easily. I thought about dried beans (pintos, reds), and I may end up getting some of those down the road to change up the sensation on occasion, but rice seemed like the best start. 
I bought 40 pounds of rice and a container to keep it in. Most grocery stores have giant bags of it, and the big warehouse stores have it in bulk as well. The amount was totally arbitrary, I had no idea how much would be "enough"; we are talking about a bathtub here. Plus, I figured if there was too much the rest could be used as replacement when we need to freshen it up.

The container I got is awesome! It's a pet food keeper (by Boots and Barkley). It has a lid that snaps closed tight, and the best part - wheels! You can't even see them because the bottom of the container is actually arched so that they are tucked in and it sits even with the floor. The wheels are important because 40 pounds is not so fun to lug around, even if you can keep it in the bathroom.

Kitchen utensils make great accessories for this. We used funnels, a big spoon, a spatula, and a measuring cup. 

I scooped what ended up being a bit more than half of the rice in to one end of the tub. It doesn't look like much at first, but once he gets in there, you can see there was plenty to bury himself with... 

(I bought Jasmine rice, by the way. It was what they had in bulk and I happen to like the way it smells, but if you don't want your bathroom and your child smelling like Thai food, then you might want to go with a different type!)

He was funny - when I first sat him on the edge of the tub so he could put his feet in, he almost froze, and was glancing around suspiciously like, "I know the fun police are here somewhere... " but once he understood that I was actually encouraging him to get in, he went for it.

He loved it! At one point he was sitting exactly the same way he does at the beach, with his legs stretched out in front of him.  He was running his hands back and forth over the rice like he does on the sand. He was also using the spoon to fill the cup - my child who normally shuns utensils or writing implements for practical purposes, got some fine motor work in without even realizing it.

When he was done, or rather, when I decided an hour in the Rice Tub was probably good for our first time out, I just brushed the stray grains from him and scooped it all back in to the container. Tossed the utensils on top, closed it up, ready to go the next time. (I also gave him a regular bath afterward so he wouldn't go to school the next day smelling like A Taste of Thai ™.)

So now we have a way to get some great sensory time, and all I had to get was the rice and the container. No mess since it all stays in the tub with him, he can actually get completely in there with it, and, we can do this any time - the tub's not going anywhere and it's inside so the weather doesn't matter. Toad is more interested in the sensory input he gets from it, so he doesn't throw it around. Clearly you have to use your judgement based on your child, but keep in mind, rice is pretty easy to clean up if you need to.  

Now that I've seen how much he loves the rice, I am definitely going to get beans for a change of pace down the line. They are also easy to find in bulk. 

And you know what else we're going to try in the tub?

Shaving cream. Or rather,  foam, since these days shaving cream is not actually what we're looking for for sensory time. Gillette and Barbasol still make the foam type, and Gillette has a sensitive skin version if you need it. Toad loves it when they let him play with shaving cream at the sensory table at his school, so I figure this will work well in the tub, and, make a fun lead-in to his regular bath time. 

I can't believe I didn't think of this sooner but I'm so glad I figured it out - it's such a great way to give him the sensory stimulation he craves, while keeping him busy and calm at the same time. With August coming up fast and with it, no school, it will be nice to have this option when we need it. 

Sunday, July 24, 2011

Help Urban Autism Preschoolers Get a Playground

TPGA friend Leo surveys the bare yard that is the play area for preschoolers with autism
at John Muir Elementary School in San Francisco
For many kids with autism, playgrounds -- no matter how the kids use them, and often despite physical disabilities -- are something they can use without needing 1:1 direction and support. The teacher of the autism preschool class at John Muir School in San Francisco says that's certainly true of her eight students -- the problem is, they don't have a playground. They have a bare patch of asphalt, with circles painted on it. And they are not allowed to play on the gorgeous new elementary playground adjacent to their yard.

The class parents have already worked with the class teacher to determine the best, most appropriate, and accessible play options for the autism preschoolers. The problem is, the school doesn't have the money for the playground.

But you can help the preschoolers get their playground, by voting for the Pepsi Refresh Muir Autism Play Project every day through July 31st. You can find information on the site, muirautismplayproject.com:
The general-education and autism-specific preschool classrooms at John Muir Elementary School desperately need a place to play; students currently play on a patch of bare asphalt. We’re raising money for a play structure for these deserving children!

Vote for us on PepsiRefresh every day, July 1-31. If we’re one of the top 15 vote recipients, we’ll get $25,000 to build a playground! You can vote here: www.refresheverything.com/muirautismplayproject by creating a pepsi log-in or through Facebook, or via text message by texting 107391 to Pepsi (73774) to vote from your mobile.

Thank you for your support!
We hope you can take the time to support the Muir Autism Play Project with a daily vote, and also spread the word to your other autism community circles. Because that is what we do -- we help where and when we can. This is a really easy way to do good for kids who deserve -- and need -- better. Again, thank you. -The Editors

The Muir Autism Play Project video:


Muir Autism Play Project from Oona Hanawalt on Vimeo.

Short video contrasting the bare autism preschool playground yard with the off-limits (because it's for ages 5 and up) elementary playground on the other side of a chain-link fence:

Friday, July 22, 2011

Autism Families: Seeking Support Is A Sign Of Family Health

Laura Shumaker

I was a part time pharmaceutical rep with a one and a half year old at home the first time I got really sick, sicker than I had ever been. I remember walking up a flight of stairs carrying my detail bag full of Advil and The Today Sponge (yes, we are talking 1989) and feeling so weak that I had to sit down until I felt strong enough to go down the stairs in search of a pay phone so I could call my husband.
"I think I need to go to the emergency room," I told him. I was diagnosed with a meningeal infection and was given IV antibiotics. It took me weeks to completely recover.

In a follow-up visit, I told my doctor: "This is so strange! I never get sick!"
At that visit, I didn't admit to him that I had been laying awake at night worrying about Matthew's development after noticing that he wasn't meeting the milestones of other children his age.

In the years that followed, Matthew was diagnosed with autism, I had two more sons...and I had a host of stress-related illnesses, including a case of pneumonia that landed me in the hospital for two weeks.
I knew all along that I needed help, but we were spending so much on Matthew's therapy that I couldn't justify the cost of a therapist for myself.

"This is just the way it is," I told myself, "Talking to someone is not going to change that. I just have to tough it out."

So I talked to family and friends, usually ending the conversation with, "But I'm fine, it could be so much worse."

I prayed, and I exercised when I wasn't sick. I didn't sleep. And I most certainly did not seek support outside of my family circle, and I hid or denied the stress I was experiencing to those within my family circle.

Then, when my son with autism was nine years old, it couldn't be hidden anymore. I had a public anxiety attack at a restaurant. That night, Matthew darted away from our table, and I barely caught him before he dashed, heedless, into a busy street. Holding him, I couldn't stop crying.

That is when I realized I needed a therapist to support me as the parent of a child with autism.

If you, the parent of a child with autism, are somewhere along this path but still have doubts about the value of psychological suppoort for you, read on to learn how my own defenses and misconceptions were debunked.

Defense: "This is just the way it is. Talking to someone is not going to change that. I just have to tough it out."

Yes, this is the way it is. Our children are the way they are. But we can change how we react to our children -- our children's behavior, and our children's condition.

Research studies indicate that there something uniquely stressful about raising a child with autism, even compared to parents of children with similar functional levels without autism.

"Sustained or chronic stress," says Esther Sternberg, MD, "leads to elevated hormones such as cortisol, the 'stress hormone', and reduced serotonin and other neurotransmitters in the brain, including dopamine, which has been linked to depression." Esther is a leading stress researcher and the chief of neuroendocrine immunology and behavior at the National Institute of Mental Health. "When these chemical systems are working normally, they regulate biological processes like sleep, appetite, energy, and sex drive, and permit expression of normal moods and emotions."
But it is most emphatically not true that "talking someone is not going to change your response to stress" or that "you just have to tough it out".

A good therapist can:
  1. Help you manage stress with common sense tools and solutions -- things that perhaps had not occurred to you, since you are overwhelmed by the relentlessness of caring for your child, your responsibilities elsewhere, or simply don't know where to look for help.
  2. Make you (and your spouse, and perhaps others in your family) aware of resources that are available to you. Did you know, for example, that your family might qualify for free respite care? Respite care is short term care that helps a family take a break from the daily routine and stress. It can be provided in the client's home or in a variety of out of home settings.
  3. Guide you (or your spouse, or another family member) about the need for more intensive intervention needs for both your family member with autism or others in the family circle. For example, if anxiety attacks or severe sleep disturbances are troubling you, another family member, or the person with autism, medication (pharmacological intervention) may be an appropriate approach.
Defense: "Talking to my family and my friends is all I need to handle our family situation"
Of course talking to your family and friends is important. However, they can only do so much. They may sympathize, but each of your family and friends have their own point of view. An impartial professional will give you a perspective that your family and friends cannot.

Defense: "I went to a therapist before, [and I hated it] [the therapist was useless] [etc]."
I have had these experiences. One therapist I went to told me in the first few minutes that she was going through a horrible divorce. Another asked me to do something I found silly: role play with an empty chair.

Defense: "I (we, our family) can't afford it."
I know. Therapists can be expensive. Our family is in Northern California, and my doctor recommended a therapist that was partially covered by our medical plan.

Some resources:
Elsewhere in the United States:

Another option: group therapy

Group therapy is an excellent option. One source for therapeutic groups is your child's pediatrician.
"I've used private therapy and the support of friends and family, says Susan Woolner, autism advocate and the mother of twins on the autism spectrum. "We also have a very strong autism parent network that supports other parents at breaking point. It works well because we've all been there and our support is unconditional, without judgment and we've all been there ourselves."
From the TPGA Editors for readers not in Northern California
  • Autism Speaks has an online nationwide Family Resources Services Guide. The TPGA editors have not evaluated the quality of resources available there, so this listing is not an endorsement, merely a referral
  • The American Psychological Association has a search engine to find licensed psychologists who treat families affected by Aspergers, autism, and persuasive developmental delay --not otherwise specified (PDD-NOS). The TPGA editors have not evaluated the quality of resources available there, so this listing is not an endorsement, merely a referral
  • There are many different approaches to therapy. Some may be work well for you, and not somebody else, and vise-versa. You can ask your doctor for a recommendation, or your friends, or even someone like a school psychologist.
  • It is appropriate to collect a few, or a lot, of recommendations from friends whose children face challenges like yours. It is also not only appropriate, but essential to interview therapists as to their therapeutic approach.
If your family is struggling,
please don't think you should "tough it out."

-----
A previous version of this essay was posted at http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=79789

Wednesday, July 20, 2011

The Last Word on "Person First" Language

Stuart Duncan
www.stuartduncan.name

The idea behind "person first" language is putting the person first, e.g., person with autism. This emphasizes the person and not the disorder. Fine. Or so I thought.

But then I heard from several (and by several, I mean a lot) of people with autism who specifically told me they prefer autistic because autism is very much a part of who they are, and how they perceive the world. They accept their autism, they embrace it, and they want to be known as autistic. Fine. Or so I thought.

And then I found out that not every autistic feels this way. Some actually do prefer "person with autism," because they "hate how much autism has made their life suck" (their words, not mine). Fine?

Well, in some education systems, the teachers are specifically directed to use "person first language" because that's what some parents insist on and it's best that the education system not aggravate the parents. Fine?

Here's the thing. If I have dozens, even hundreds of autistics telling me to call them "autistics" because it's what they want, and then I have dozens, even hundreds of parents telling me to use "person with autism" because that's what they want ... whose side do I take?

Nobody's.

I don't take sides. It's ridiculous. Seriously, is this how we want to spend our time? Is terminology really a reason to get mad at each other? Can something this childish really begin to divide a community?

The thing is, there's a third group of people. They're the "I don't care" group. I love this group.

Because, in my experience, most autistics, who are "people with autism"... they don't care. Actually, they'd prefer you call them by their name. They're more likely to respond, that way. Furthermore, person, people, person of humanitarian decent ... whatever. I think it really doesn't much matter.

Most parents of autistic children, who are children with autism ... I think they don't care, either. Again, using their child's name is generally the best option. But those parents probably don't mind how you refer to their children so long as you do it politely, nicely, and with respect.

I fall into the "I don't care" group myself, though I actually do care: if someone tells me they prefer one label or the other, I'll do my best to respect their wishes. But if that person is in a group of people, all of whom have various wishes, or don't care ... well, get ready for a mixed bag of terminology.

When and if my son is able to tell me he prefers one label or the other, you can bet I'll stick to that term. With him. I'll still use another term with another person, if that's what that person prefers. And unless I'm told otherwise, I'll use the term that best fits the sentence. Because "the journey of my autistic child" sounds far better than "the journey of my child who has autism."

Anyway, if you're reading this because you've told me which label to use with my son, please visit the closest Walmart, buy some overalls, cowboy boots, a pink shirt with ruffles and the biggest hat you can find -- and wear that. Because I feel it's only fair that you do something for me, too.

It's not that I don't value your wishes, it's not that I don't understand exactly where you're coming from. I do. But quite frankly, I find it rude to tell me how I should refer to my own child.

If the entire world decided, unanimously, that we should use one label or the other, then I would abide.

But it's not that simple. I won't make one group of people mad to make another group happy. There are better things to focus on, things that can benefit all of us.

----

A version of this essay was previously published at www.stuartduncan.name.

Monday, July 18, 2011

Interview: Alison Singer, President of the Autism Science Foundation

(R to L) Alison, Shannon,
and a Furry Blue Monster
Alison Singer is president of the Autism Science Foundation (www.autismsciencefoundation.org), an organization dedicated to "funding outstanding science." She was interviewed by TPGA editor Shannon Des Roches Rosa for BlogHer.com, in 2009. Alison not only gave TPGA permission to republish that interview, but updated and expanded it to cover the ASF's many interim achievements and successes.

The Autism Science Foundation (www.autismsciencefoundation.org) has accomplished so much in such a short period of time. Tell us about some of the achievements that have really made you proud.

Well, first of all, we couldn’t do any of this without the incredible support of our amazingly dedicated donors, volunteers, board members, social media friends and staff. They make it all possible. We have been so fortunate to have so many vocal and active supporters. We are also extremely grateful for the tremendous outpouring of support we’ve gotten from the autism research community, the NIH (National Institutes of Health), the CDC (Centers for Disease Control & Prevention), and the AAP (American Academy of Pediatrics), and for the warm welcome we got from other autism advocacy groups, many of which we now work with collaboratively.

What I am most proud of is that we starting funding science in our first year of operations and have increased our funding levels each year. In just two years we have funded just under half a million dollars in grants. Our funds support pre and post doctoral fellows who work with established research mentors, investigating the causes of autism and developing new treatments. These grants are already producing results, including a new mouse model of autism and a new intervention strategy that utilizes the recess period at school to work on social skills.

I’m also very proud of the educational programs and conferences we are supporting to help disseminate autism research to families and schools so that new evidence based research can be put into practice to help real people. I love our Science and Sandwiches program which brings small, informal groups of scientists together with parents and individuals with autism to share ideas. It’s critical for these stakeholder groups to work together and share information. I also love our IMFAR scholarship program that sends stakeholders like parents, siblings, individuals with autism, special education teachers, student researchers, journalists and others to the International Meeting for Autism Research.*  These opportunities to bring diverse stakeholder groups together to discuss ways to increase the pace and relevance of research is really critical.

I am also extremely proud of the amazing people who work with me every day at the Autism Science Foundation; Jonathan, Dawn, Max and Ben. They really make great things happen for all our families. But maybe what I am most proud of is when someone, who shall remain nameless but who has run organizations and is in a position to know, asked me how many people work at the Autism Science Foundation and then guessed 30-40. I almost fell over. We get a lot of work done because it’s a labor of love.

What’s ahead for ASF? Any new programs planned for the future?

We are planning to increase our funding levels again this year for pre and post doctoral fellowships and we hope to offer even more IMFAR scholarships in 2012 to get more stakeholders to that important meeting. We are always looking for ways to break down research barriers and involve more families and scientists in autism research. We are working with the IAN project (Interactive Autism Network) to create more opportunities for students to utilize the IAN database for their research and we are looking at ways to encourage more families to participate in clinical trials and tissue donation.

This fall we are sponsoring two educational symposia; one in New York and one in California. The NY conference is for teachers and will focus on helping them understand and implement new evidence-based interventions that are designed to be used in schools. The California conference will be aimed at parents and will focus on family issues and assistive technologies.

We are working with other autism advocacy groups to prevent and protect children with autism who wander and also to eliminate harmful restraint and seclusion practices. The first step in achieving these public policy goals is often collecting data about the issue and so ASF organized a coalition of advocacy groups to gather rigorous data on wandering. The next step is to use the data to effect change.

I’m also very proud of our social media efforts. We have vibrant, active Facebook, Twitter, LinkedIn, and YouTube communities that provide great support and information for families. And also we’ll be relaunching our web site in early fall; it will have a tremendous amount of autism science information and will be a real resource for many different autism stakeholders. I’m really excited about the new website; the beta site looks absolutely fabulous.

Why was the Autism Science Foundation (ASF) founded? What gaps will it fill?

The Autism Science Foundation’s mission is to support autism research by providing funding and other support to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. We also provide information about autism to the general public and work hard to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

ASF adheres to rigorous scientific standards. We believe that outstanding research is the greatest gift we can offer our families. Every research dollar needs to count. We were thrilled when after only five months of operations [in 2009] we were already able to release our first request for scientific grant proposals. Our first round of grants supported graduate and medical students interested in pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders. The grants provided funding for them to begin their research and thus their careers in this field. This is really a critical part of the process. [At the 2009] IACC Scientific Workshops, the concept of recruiting young, energetic scientists with new ideas into the field was highlighted as a critical priority.

How do ASF efforts differ from organizations such as the Boston Autism Consortium or the M.I.N.D. Institute?

ASF is committed to supporting outstanding science and scientists but we don’t do research ourselves. We have great respect for the work being done at the MIND Institute, by the Boston Autism Consortium and by other centers and universities across the country and around the world. As a public charity, our focus is on raising money from the public to support the type of work being done by these groups and other groups that are taking a scientific approach to understanding what causes autism and to developing new treatments for kids, teens, adults and senior citizens. Raising money is not easy, especially in the current economic climate. Our families are often tapped out because they have huge expenses for therapy that are not covered by insurance. Our goal is to broaden the base of donors so that we are able to provide more funds to scientists and support their research efforts.

That said, the response from the parent community has been extremely supportive. The response from the scientific community has also been very supportive. People are just very enthusiastic about the idea that we are really going to follow the science and not let the politics trump the science.

ASF is also very committed to sharing and disseminating information about autism research and treatments. Our website has a very popular Autism Headlines section where we post the latest news about autism research. Our Autism Research section publishes links to the latest studies and provides commentary and analysis from the investigators themselves. We also run a bi-monthly program called Science and Sandwiches that brings scientists and family members together to talk about research. These have been great opportunities for information to flow in both directions. It’s critical for scientists to hear from families as well as for families to understand the latest research discoveries. The information that scientists glean can’t help families if families don’t know about it.

What areas of autism research is the ASF currently supporting?

In our current RFA we are inviting applications in all areas of related basic and clinical research. We are particularly interested in human behavior across the lifespan, which would include language, learning, communication, social function, epilepsy, sleep, repetitive disorders and caregiving. Caregiving is a critical area for us to understand better. We know our families are highly stressed and we need to find betters way to understand how we can support families so that they can support their members with disabilities. We are also interested in neurobiology (anatomy, development, neuroimaging), neuropathology, human genetics/genomics, pharmacology, immunology, molecular and cellular mechanisms, and studies employing model organisms and systems.

Autism research funding is sometimes criticized for helping future generations at the expense of the existing autism community. Will the ASF be putting energies into community support, outreach, or education?

Our focus is on research and on research dissemination. There are lots of groups that do wonderful work in community support, education, and lobbying and we will work with them to help support their efforts whenever we can by partnering in local events. But the focus of our organization will be on raising the funds necessary to make meaningful advances in research.

What kinds of conversations have you had with members of the Neurodiversity community? What concerns have they voiced to you?

I have spent a lot of time in the last year or so speaking with members of the neurodiversity community and have learned a lot from these conversations. These relationships have been very productive for me, and I have a much better of sense of the issues now. I have changed my behavior and rhetoric in response to some of the very good points people have made, and continue to speak frequently with many of the leaders of the neurodiversity community. There is still one big issue, however, on which we disagree. I do still feel that genetics research is the best chance we have for understanding the mechanism of action of autism and creating targeted therapeutics. Genetics research is not about creating a prenatal test and eliminating people with autism from the planet. It’s about understanding the pathways that cause the most disabling symptoms of autism and figuring out how to develop treatments that provide relief from these debilitating symptoms. Our belief in the importance of genetics research in no way detracts from our eagerness to support research into supports and services and expansion of funding for this critical area. I have been extremely vocal on that issue at the IACC meetings.

I also think a lot of these issues stem from the heterogeneity of the autism diagnosis. I truly pray for the day to come when my daughter can blog or self advocate. She and so many kids like her still have a long way to go in overcoming significant cognitive and behavioral challenges. I realize that concepts like self determination are important for certain individuals with autism, but right now in our family we are still working on preventing our daughter from banging her head against the wall and hurting herself, or running out of the house into traffic and getting run over by a car. Issues like preventing pain and protecting safety are still front and center for many of our families.

Why do you think scientifically refuted claims of autism causes and cures still appeal to some parents?

I think it’s because parents love their children so much. It’s very hard to accept that your child is going to struggle and have these tremendous challenges. It’s natural to want to blame someone or something. Believe me, I've been there. But parents need to look at the data. You can't be so focused on anger that you lose sight of what the science is saying because that's really not in the best interest of the kids. I would encourage parents to look at the science and make decisions based on the science. And the science is clear in the case of vaccines and autism. Vaccines don’t cause autism. I think families were right to ask that the vaccine studies be done in the late '90s and the early part of this decade, but our public health community really responded to that. And we now have dozens of studies looking at vaccines and vaccine components, all of which have yielded the same answer that, no, vaccines do not cause autism.

I think we owe it to our families, we owe it to people with autism, to fund studies that are likely to yield new information. If you keep asking the same question, you're going to get the same answer. We have to ask new questions and try to find out what really is causing autism.

It also scares me to see children with autism being put at risk by therapies that have no evidence of efficacy and can do real harm, especially when they divert time and energy away from proven therapies like Applied Behavior Analysis. One thing I find so interesting in our community is the huge placebo effect in so many treatment clinical trials. Parents say the kids are benefiting from treatment, but often the parents of the kids on placebo report even better outcomes. Again, I think this is because we love our kids so much and want them to improve. But this is why it’s important to have rigorous, double blind, placebo controlled testing of various interventions.

If you could communicate one message about autism to those outside our community, what would it be?

The message I constantly try to communicate is that our family members can learn and improve. They can make meaningful progress at all ages. The learning window does not magically close at age 5, 13 or 21. My brother with autism, for example, wasn’t toilet trained until he was in his thirties but now is able to participate in a program delivering Meals on Wheels to homebound senior citizens. He is a contributing member of our community, but he wouldn’t have had that opportunity if we had given up on teaching him new skills. Likewise, my daughter Jodie is doing things now that we never would have expected. It has taken six years to teach her to ride a bike, but she’s almost there. Jodie has benefited tremendously from Applied Behavioral Analysis therapy. She has learned to have some actual functional, communicative speech. She's able to make her wants and needs known. That's really a breakthrough. And as her speech has improved, so have some of her most difficult behaviors. We owe so much to the amazing teachers and therapists who work with her.

* note from the editors: Shannon Rosa was the recipient of one of the IMFAR grants in 2011. Please visit www.autismsciencefoundation.org for more information, or to apply for a grant next year.

Friday, July 15, 2011

Coming Out: Autism in College

Kerry Magro
KerryMagro.com

Kerry was recently featured in a story that ran in the Orlando Sentinel and the L.A. Times which shared his transition to college life and the skills he gained there as he became a self-advocate. He has since graduated from Seton Hall.
                      -The Editors

Hello, my name is Kerry Magro and I have autism. I just recently learned about The Thinking Person’s Guide to Autism from a truly outstanding individual, Laura Shumaker, who is a remarkable advocate for those of us who are on the spectrum. 

Once I looked at the website, and read some of the essays, I knew I was hooked.  Regardless of what I took from the essays, I wanted to help in any way I possibly could. This gave me the idea of posting one of my own personal works about coming out about being on the spectrum.

Below you will find one of the first essays I wrote about autism in regards to my experience on the spectrum and it’s the one that holds the closest place to my heart. I hope you enjoy my essay about the start of my journey into Autism Advocacy.
***
Some of the biggest fears I’ve ever had in my life are the fear of the unexpected, fear of change, and the fear that I would be looked at differently. These all came into focus my first year of college at Seton Hall University. Before college, I had only told a few people that I was on the spectrum. This was mainly because when I was younger, when my parents would tell me I was autistic, I had no idea what that meant or how that affected me. I only knew one thing – I was not artistic.

In both grammar school and high school, I never felt the need to tell anyone either, since I went to a private school, Community Lower/Community High School in Teaneck, N.J., for students with learning disabilities. There was a certain comfort that I enjoyed there, knowing that I was with others I could relate to. We all had 'something' with some letters so it wasn’t a big deal.

When college came along, I didn’t know what to expect. When I was deciding on what college to go to, I chose the college that best matched my future career goals (sports management), not the school that would be best match my disability (a school with more accommodations). My high school academic advisors, while well-meaning, did not see me surviving at a post-secondary program; it wasn’t the recommended choice. They saw it as a huge mistake, which they thought would hurt me in the long run. Looking back, I'm glad I ignored their concerns.

This brings me to the day I came out about my disability-publicly. It was during one of my freshman classes: “Oral Communication.” My professor told me to pick a topic that I knew a lot about, and speak  for about 10 to 15 minutes. The obvious choice in my mind was to pick autism, considering my public speaking skills were still very limited. I thought it would be an easy subject to talk about, because I know a lot about it. The theme of my presentation was, “how autism impacts playing basketball while highlighting the story of Jason McElwain’s historic game, illustrating how someone with autism can overcome the odds.”

For those who don’t know Jason McElwain, he was the high school basketball team water boy, who has autism, turned basketball star. He didn’t play one game in high school, until the last game of his senior year, when he scored six three-pointers in a matter of minutes. This game became one of the bigger underdog stories in recent memory. So now I was set; I would speak about him for five minutes, present a general overview of autism for another five minutes and close by telling them that I had autism.

The day of the presentation, everything went according to plan. I had spoken about all of my main points; however, when it came down to my closing statement, telling my peers I had autism, I froze. The thoughts running through my head were endless: What happens if they treat me differently? What happens if no one wants to have anything to do with someone who is different? Finally, after I started speaking again, I reminded myself that the one fear, the one fear that I never want to let take the better of me, is the fear of being who I am. Being me had taken me to a post-secondary education, and being me was the only way I was going to get through this presentation.

At the end, the closing statement of my presentation was: “Autism cannot define who you are, only you can define autism. I have autism, so I know especially, and I ended up the captain of my high school basketball team, so I can relate to this message.” As soon as this was said, I was applauded and given a standing ovation by both my professor and my peers. This was a wonderful feeling.

After the speech, I was very open to all my peers about being on the spectrum and I have been open since that day. Many people, both with autism and not, ask me if telling people I am on the spectrum was a mistake, and truth be told, it has only made me stronger. Granted, things are not perfect. I am still judged, and looked at by countless people,  as broken. I don’t dislike these people however, I pity them. People are still very unaware, sometimes ignorant and sometimes afraid of what might be different.

During my time at Seton Hall, I founded an organization to spread disability awareness called Student Disability Awareness (SDA) and founded a non-profit called KFM Making a Difference in the Community. Both of these organizations mean a lot to me as I continue to promote disability activism throughout New Jersey. Since the days of that Oral Communication class I’ve gone on to speak at several different venues about my story and am hoping to continue to mentor and help those with and without disabilities who want to become more aware of disability awareness.

Wednesday, July 13, 2011

Listening Therapy

Kim Wombles
kwomblescountering.blogspot.com
www.science20.com/science_autism_spectrum_disorders

Parents are always looking for new treatments to help their children with autism; it can be daunting to keep up with the multitude of new therapies constantly popping up on the internet, many with similar sounding names. There are several different “listening therapies” or auditory integrative training programs available online promising relief for autism symptoms. According to Sinha, Silove, Wheeler, and Williams (2006), “treatments to overcome variations in auditory sensitivity commonly encountered in people with autism have been developed and are collectively called auditory integration therapies. They include auditory integration training (AIT), the Tomatis method and Samonas sound therapy.”

Listening (or sound) therapies fall within the category of auditory training programs. Database searches show no results for any scientific investigation on specific programs available online, such the Lollipop Listening Therapy, Tomatis, or EASe, and there is limited research into auditory integration training for reducing autistic behaviors and issues.

The lack of research into the newer programs and the American Academy of Pediatrics’ recommendation to not use auditory integrative training has not stopped these programs from being popular ones for parents and therapists to use, as the abundance of sites relating to listening therapy, sound therapy, and auditory integration training attest. In 1998, The American Academy of Pediatrics issued a blanket rejection of both auditory integration training and facilitated communication which it reaffirmed in 2006. The AAP’s conclusion reads: “Their use does not appear warranted at this time, except within research protocols.” Much like facilitated communication has been made over into supported typing, all appearances indicate that listening therapy is auditory integrative training rebooted.

Sinha et al.’s 2006 attempted meta-analysis of auditory integrative training concludes with this warning: “AIT continues to be practised worldwide,30 despite evidence that shows it to be still an experimental treatment at best, and one which may be only available at a considerable cost to the family.”

Even without this research to rely on, parents can evaluate these programs by looking for a series of red flags that indicate a potential problem:
  1. Does the program promise to recover your child from autism?
  2. Are the total costs hidden?
  3. Do you have to buy special headphones and special equipment?
  4. Is the program prohibitively expensive?
  5. What evidence do they offer? (website articles and testimonials do not count as good evidence)
Traditional occupational or speech therapists may offer the program as part of their routine therapies, making it appear to be legitimate and evidence-based. While it can be hard to say no to a therapy, if the therapist is pushing the purchase of the items related to AIT, then parents should strongly consider opting out. With little to no evidence that this works and with the AAP’s recommendation that based on the science at hand it not be used, parents might want to think very carefully before pursuing this option.

The reality is that the therapy is in use by therapists, and parents are exposed to these kinds of therapies without ever being informed of the legitimacy or the quality of the evidence for the treatments. It's not just auditory integrative training or facilitated communication. It's sensory integration training and rapid prompting method, and so on. Not all of these can cause harm, but at best they are wild goose chases, and drains of income and time. Parents are in a no-win situation here, inundated with more and more information, with new therapies, with hopes, dreams, and promises.

In the end, parents must make the best decisions they can with the information they can find. With far too many treatments and therapies just a google search away, the demands on parents to make informed, practical decisions for their children is a daunting task.

Sources
American Academy of Pediatrics (2010). Auditory integration training and facilitated communication for autism policy statement. Retrieved July 8, 2011 at http://aappolicy.aappublications.org/cgi/content/full/pediatrics;102/2/431.

Sinha, Y., Silove, N., Wheeler, D., & Williams, K. (2006). Auditory integration training and other sound therapies for autism spectrum disorders: A systematic review. Archives of Disease in Childhood, 91, 1018-1022. http://adc.bmj.com/content/91/12/1018.full.pdf

Monday, July 11, 2011

Good Cop

Carol Greenburg 
 
I could have kicked myself for not getting the name of the wonderful New York City police officer who pulled me over the other night. I'm a safe driver for the most part, but Asperger's sometimes interferes with my perceptions whether I'm standing still or navigating a dark road. It was rainy, I was distracted, and if I can't even read body language ... Well, I was as I so often am, stumped. 
 
Even at my best it's sometimes unclear to me why people honk their horns at me,  so when the cop driving behind me started waving his hands I didn't know if  wanted me to get out of his way or whether he was trying to pull me over. Turns out it was the latter. I know this because he used his loudspeaker to announce to all of SoHo that I was to put my car in Park immediately. You'd think the police lights would have cued me in sooner, but the sensory overload just made me freeze, and we aspies don't pick up on subtle hints. Like sirens.
 
Anyway, I figured he'd want to see my license, but I was too scared to move. Eventually, however, after he pounded on my passenger side window and I managed to lower it, I knew I needed some answer to a gruffly phrased "Is there a problem, Ma'am?" Very slowly, I handed him the emergency autism card I always carry and asked if he would be willing to look at it before we spoke any further.
Autism safety expert Dennis Debbaudt says that autistic people are seven times more likely than non-autistic people to have encounters with law enforcement. Luckily, this officer seems to be one of those law enforcement officials who had experience with people like me. Maybe he has an autistic family member, or maybe the NYPD just does really good staff training. Either way, I was so impressed by his whole demeanor after he took the time to look at my card. 
 
He asked in a calm, slow voice if he could approach the driver's side of the car so that we could hear each other better. I nodded. He then said, "I'm going to ask you some questions. If there's anything you don't understand, just tell me and I'll go over it again." I said yes, produced my licence on request and answered his very clearly phrased questions. He asked me if I was aware I had been straddling two lanes and said he had suspected I was a drunk driver. A few years ago, I'm afraid I wouldn't have had the social sense to repress laughter, but by now I have acquired the social skills to do so. As a lifelong teetotaler, that particular accusation rarely comes my way. He then warmly greeted my quiet seven-year-old sitting in a car seat. The officer seemed unsurprised that my son didn't answer; it's possible he knew how likely it is for a parent on the autism spectrum to have an autistic child. He asked politely if I felt I could get us home safely. Thanks largely to his courtesy and professionalism I said I could. And I did.
 
This, my friends, is what I call true Autism Awareness. This encounter was not about frightening anyone into anthropomorphizing a neurolgical condition into an evil kidnapper hell-bent on stealing everything from me or my son that makes us human. This was about a decent person, a credit to his profession, who needed only the simplest of explanations to treat a person with a disability with the respect that every human being deserves.
 
Much credit should be heaped on this sadly anonymous individual and the entire police department he represents, but there is a larger issue here. We all, people with and without disabilities, must always be prepared to meet each other halfway. I carry an autism emergency card not as a convenience but as a public responsibility. It is my duty to reach out and communicate as best I can even when speech fails me. It is also always my responsibility to model this behavior for my autistic child. The officer did the right thing by stopping me to inform me I was endangering myself and others. And then he did the right thing again by drawing upon his training and experience to understand a person whose actions at first must have seemed reckless.
 
May we all treat each other with such respect and compassion, at all times.
 
----
 
A version of this essay was published at http://aspieadvocate-ascd.blogspot.com.

Friday, July 8, 2011

The Color of Skin

Brenda Rothman
mamabegood.blogspot.com

In our neck of the woods, we talk about race.  We use "black" and "white." It kinda freaks people out. But we feel having the conversation is important. Much more important than ignoring it.

The other day, I was talking about skin color.  See, Jack doesn't notice people's skin color. Instead, he looks at foreheads and hair color. It's just the way his brain is wired. So I find it kinda random, based on our own wiring, that we use race to identify people. I mean, I know that we do. It's in our history. It's in our society. But, I'm thinking, my child sees people, not people categorized by skin color. Isn't that what we want?  If he's already treating everyone the same, why should I label people based on race?

So I asked Denene Millner, founder, editor, author of the website My Brown Baby the question: "Why should I teach my child about race?"

You must read her insightful response. Denene has spent a lot of time thinking about race and parenting. If I had a parenting advisory board, I'd have her on it. Denene writes that, no matter how innocent the child, we parents cannot remain silent about race because the world will fill the void with stereotypical messages, myth, and prejudice. And, just like discussions about sex, if we wait for a problem to come up, we've waited too long.

That makes sense to me. I like Denene's suggestions that we should use developmentally appropriate ways of introducing books, images, and friends of different skin colors into our child's life.  

But when we're doing these things, we have to remember something important.  Denene writes:
And seeing as it can’t be hidden and I’ve worked so hard to love my brown skin despite all of the negative storylines/assumptions attached to it, the last thing I and oh so many more who look like me want is to have someone say she doesn’t “see” it. 
She continues:
I will, however, say that a large part of who I am and what I love about myself is rooted to my race and the culture connected to it; my skin is no less a part of me than my limbs, my breath -- my heart. I know for sure that I am not alone in my thinking on this. It does not define me, but this brown skin has helped shape me in immeasurable ways. 
The beauty of Denene's idea stopped me in my tracks.

The goal is not to not see a person's skin color.

It is to see it, appreciate it, and embrace it as part of who they are. Not to be blind to or deny differences in skin color. We don't want to erase who that person is. Our skin color, our heritage, our culture, our shared history is part of who we are, what has influenced us, what has made us the persons we are today.

Do you see it yet? Our common ground?

That is exactly what I want for my son. My son's difference is autism. It is not apparent from a picture. It is not written on his skin. He can walk into a store and not be noticed by his skin color. But he will be noticed by the differences in his movements, his behavior, his communication, and his social interaction.

He will be judged.

What I want for my child with special needs is same thing Denene wants for her children. I don't want people to not see my child's differences. I don't want people to ignore him.

I want people to see his differences, acknowledge the difficulties, and appreciate his differences as part of who his is.

Yes, Jack's behavior is different. Yes, his physical movements look awkward. Yes, he's looking at the floor and not at you. Yes, he is making car noises all the time.  I want people to see how hard he works to overcome his challenges, to appreciate that he's trying to interact, that he's curious about everyone, that he wants to be with people. To see him not just for his outward appearances, but also for his bubbly personality, his earthy sense of humor, his affectionate nature.

'Cause it's what we all want.

----

Brenda wants to thank Denene Millner for engaging in this conversation and for the kind, generous, and gracious way she did so.

This essay was previously published at Mamabegood.blogspot.com

Wednesday, July 6, 2011

Autism and Orgasm

Lindsey Nebeker
nakedbrainink.com

One of my blog readers who is on the autism spectrum brought up a concern regarding recent  bedroom issues. This person is finding that the process of achieving orgasm has become increasingly difficult:
"[Since learning more about my ASD diagnosis] I've been noticing a growing awareness in what is going on around me and what my body is feeling ... and it is becoming sort of distracting during sex, mainly orgasm. As I began to feel my self start to climax I suddenly became very focused on the noises and things in the room such as the fan running, and how the moving air felt on my skin. Then I suddenly became overwhelmed with my body itself, to the point that it took away the orgasm. I focused intensely on how the sheets felt against my skin, how my partner’s skin felt on mine, how my hands felt running through [my partner’s] hair, then the ever knowing coldness I get through my body in that passionate moment. I kept thinking ... what is wrong with me? Is there something wrong with me? Why in this moment of love am I so overwhelmed with my surroundings when I have something so special happening? Do [people on the spectrum] experience intimacy and orgasms differently [than others]? It was way more intense but very overwhelming to me, too."
This person is not alone. Others on the spectrum have voiced similar concerns and curiosity regarding these specific issues, which is a good excuse to bring up such a bold topic.

Let’s make one thing clear: people with autism do experience orgasms. But how different is the orgasm experience for an autistic individual? Is it more intense? Is it less intense? Is it the same?

There has yet to be a scientific study conducted on orgasm and its effect on people on the autism spectrum.  So just for entertainment’s sake, we will discuss the possible hypotheses, address the possible challenges unique to individuals with an autism spectrum disorder (ASD) or sensory sensitivities based on personal perspectives, and wrap up with final thoughts.

First, let's break down the hypotheses...

Monday, July 4, 2011

Interview: Debra Hosseini of ARTISM: the Art of Autism

Debra Hosseini's show ARTISM: the Art of Autism is opening at Manhattan's SoHo Gallery for Digital Art on July 7th. The exhibit opens an incredible doorway into the imaginative worlds of people with autism. Samples from the SoHo Gallery for Digital Art show can be found at artismtoday.com/art-gallery

TPGA talked with Debra last week about the project's inspirations, goals, impact -- and how wonderfully it represents the range of autism experiences and individuality.

ArtismPoster2Please tell us how ARTISM: The Art of Autism emerged. What was your inspiration?

The reason I started curating art shows was because my son Kevin, who is sixteen and on the autism spectrum, is a very active artist. His website is www.kevingallery.com -- you can see how prolific he is in creating his art. He has been my primary inspiration and has led me down this path.

Artism: The Art of Autism is actually the second Artism book published by Autism Today. The first book was compiled by Karen Simmons in 2004.

In 2008, when I first started working on the book, Karen  -- who is the CEO of Autism Today -- was too busy to take on the project on her own, and Keri Bowers, owner of Normal Films, suggested that I curate the book. Keri knew that I was curating art shows for people with developmental disabilities and put Karen and me into contact with one another.

The book definitely has been organic in its creation and a collaborative process. I had a very cool assistant, Kathleen Galen, from Brooks Institute of Photography who helped me with the design aspects of the book.

What are some of your artists' inspirations? Have any of those inspirations surprised you?

There are so many inspirations for the artists, they usually center around their interests. There are some artists who like texture and the sensory input that creating the art gives them, for example Wil Kerner cuts paper and pastes his cutouts on paper. There are a group of artists who love to paint animals and can see the world through animal eyes, much like what Dr. Temple Grandin describes. Those artists in the book are Marcy Deutsch and Joel Anderson. There are other artists who love to paint nature scenes and landscapes. One artist, Gregory Blackstock, paints lists of things, such as jet flyer airplanes. Some artists, such as Jonathon Lerman, draws people and faces. He is known for his charcoal drawings of lovers kissing and mothers and babies. His art was surprising because he is able to capture a depth of feeling in his art which people do not attribute to autism.

I noticed as I compiled the book that the art was grouping itself into categories that shattered myths about autism. That is why the byline on the book is Shattering Myths about People on the Spectrum. Many of the artists are very imaginative in their art, thus the chapter Whimsy and Imagination.

How has the project been received?

The book has been received extremely well. My favorite thing about the book is that the artist's themselves have been getting a lot of publicity and many of them have been on TV and radio shows talking about their art. In Vancouver J.A. Tan got up before an audience and recited a lovely poem and talked about his art installation which was how he sees the world. Also in Vancouver Marcy Deutsch spoke to an audience about her art career. Steve Selpal recently spoke in Florida about his Asperger's and his art.

Watching the artists speak before an audience about their autism and their art has been very satisfying and has given the book a life of its own. Keri Bowers, who has The Art of Autism show, says The Art of Autism is not just a book, not just an event, its a movement. I believe this to be true.

How do you find the artists?

It was quite a process compiling the art for the book. Autism Today put out a press release and we had people from all over the world sending me art. Also, I was introduced to Dr. Darold Treffert who has a website on Savant Syndrome featuring artists on the spectrum, and Dr. Rosa Martinez who edited the book and curated the United Nations show Don't "Dis" The Ability a few years ago, which featured artists on the spectrum. She now has a project called Strokes of Genius which feature some of the more well-known artists in the book. Dr. Rosa Martinez was a tremendous help in gathering the art from some of the more well known artists in the book such as Temple Grandin and Donna Williams.

How well do you feel the ARTISM: The Art of Autism artists represent the diversity of the autism spectrum? What is their age range?

The artists are representative of the diversity in the autism spectrum. They range from age 8 to 65; from HFA and Asperger's to nonverbal. Many countries besides the U.S. are represented as well, such as Canada, India, Pakistan, The Phillipines, England. About 1/3 of the artists are female, which is a little different from the breakdown in the autism population of females to male.

Have any of the artists' work changed or expanded your ideas about autism? How?

When compiling the book and through conversations wtih individuals who contributed to the book, it became very clear to me that each person on the spectrum is an individual first and has a unique perspective. Many of the artists feel that autism has helped them with their art. As Temple Grandin states, if you were to eliminate the gene that causes autism, you would eliminate much of the creativity on the planet. She has successfully, as many of the artists, incorporated her autism into her career. I tend to view autism as a different way of relating to the world rather than being a medical label or a disability. To paraphrase Oliver Sacks, to see an individual as a set of deficits or gifts is to trivialize that person. I would have to agree with that statement.

Many of the teenagers in the book are eloquent in speaking about what it means to have autism and how valuable it is to be able to express themselves through their art. The book not only features art of people on the spectrum, but also features the voices of those who were able to articulate what it means to have autism.

What are your ultimate goals for the ARTISM: The Art of Autism project?

This is a great question. There are two parts of The Art of Autism project. One is Keri Bower's entertainment portion. She has a fantastic ability to find entertainers on the spectrum in cities that her Art of Autism show travels to. The other part is the visual art component which is a component of Keri's show but also is independent of Keri's project. For example, The Soho Digital Art show in New York which runs from July 7 - 27 is primarily an art exhibit. John Ordover, the owner of the gallery has incorporated a series of films and lectures into that exhibit.

A goal of mine is to have exhibits around the world not only featuring artists in the book, but artists local to the community where the art is being exhibited. I think the world needs to change its view of people on the spectrum and that the art is a vehicle in which that change can manifest.

My ultimate goal for Artism: The Art of Autism is to empower artists on the spectrum and to inspire others to express themselves through the arts. I've been posting interviews and exhibits on the website www.artismtoday.com, and I have a Facebook page about The Art of Autism which I hope artists and others will join, and post their art.