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.     

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

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.