August 15, 2011
By Autism Society
Katie Bridges has received awards for her juvenile science fiction novel Warriors of the Edge: The Search for Stone. She maintains multiple blogs about writing, life as a person with Asperger’s Syndrome, futurism and other topics at her website, www.warriorsoftheedge.com.
Missed Part I on Friday? Read it now.
AS: How has your first novel, Warriors of the Edge: The Search for Stone, been received?
KB: I have been fortunate in that my writings have strong reader appeal across all age groups. This helps immensely in getting my book known by word of mouth. I depend upon reader comments to help generate interest in my book. I have found that other people are far better in promoting my story than I am.
I have not been fortunate in getting a single publisher or agent to read anything I write. “If you can’t get anyone to read your writing, go with self-publishing, so you can prove your book has reader appeal,” I was told. So, I did. And I haven’t regretted it. I was immediately awarded with the Editor’s Choice and Rising Star awards, very rare honors for a children’s novel, allowing my book to be featured on Barnes and Noble’s Rising Star page. This was the stamp of credibility that pronounced my book to be on equal terms with books coming out of major publishing houses.
AS: How does it feel to be a published author?
KB: Nerve-wracking. I can understand J.K. Rowling’s desire to hide once her first book became popular. She was so stressed that she couldn’t even sleep. The more attention I get, the more challenging it becomes for me. But I knew it would be difficult for me long before my book came out. I told my husband, “If my book doesn’t go anywhere, I’m going to be really shook up. And if my book takes off, I’m going to be really shook up.”
He said, “Well, you can’t win this one, can you?”
It helps when I tell myself to expect a period of adjustment for every step I take into new territory. I am adjusting and learning new coping methods to deal with brand-new things that I’ve never had to do before. It helps to be surrounded by support too.
AS: How do your stories reflect your life experiences?
KB: My stories are symbolic of my own life in many ways. You wouldn't necessarily be able to pick out what I've been through from reading my stories, but there are bits and pieces of me in many of my characters. I am like the main character, Tarek, who was forced into silence through a mute machine. In this way, he symbolizes my struggle with verbal communication. His best friend Masker is bullied, but only slightly. I minimized by own experiences with being bullied, so as not to disturb young readers. I am a bit like Masker’s mom, who suffers from anxiety and fear of all kinds. Tarek’s dad symbolizes my husband and the kind of relationship we have. I tend to buck the status quo and look for new ways of doing things, like the teenage Radley. And yet I feel guilty when I break the rules, just like the rule-abiding Minda.
AS: What advice do you have for aspiring writers, especially those with autism?
KB: Look to your strengths and build on them to compensate for any areas of weakness that you may have. Maybe you enjoy research, but suffer from a lack of confidence. Use your knack for research to build confidence in yourself. As you gain knowledge from digging deep into your favorite area, you will begin to feel that you can accomplish something with all that you’ve gained. Maybe you are repetitive, but struggle to see the big picture. Use your repetitive nature to rewrite that same paragraph or chapter again and again. As you absorb yourself into it, it will grow in your mind little by little until you begin to see the big picture. Maybe you enjoy creating details, but struggle to come up with dialogue. Use your detail-oriented mind to come up with ways for your character to say something and then choose the best dialogue. What you lack in one area, you can make up for in another. Learn as much about yourself as you do about writing, and the two will work together to bring excellence to what you produce.
Develop the practice of clever writing. Spend time every day trying to come up with a single clever thought, interesting turn of phrase or unique sentence. It may take time to come up with something, but once you do, you’ll get a feel for it. Then it will come easier for you the next time around. It’s a way of training your brain to think in a new way. Above all, have fun. If you’re having fun, your stories will reflect that feeling of enjoyment to your readers.
Topics:Living with Autism
August 12, 2011
By Autism Society
Katie Bridges has received awards for her juvenile science fiction novel Warriors of the Edge: The Search for Stone. She maintains multiple blogs about writing, life as a person with Asperger’s Syndrome, futurism and other topics at her website, www.warriorsoftheedge.com.
In this two-part interview with the Autism Society’s Nate Rabner, she discusses the creative process, the challenges and triumphs of having her first book published and promoted, and shares her advice for aspiring authors with autism.
Autism Society: Why do you enjoy writing?
Katie Bridges: I enjoy writing for the same reason that people love going to theme parks. I am, in essence, creating my own theme park when I write a story. I choose the setting, construct the landscape, design the costumes, and fill it full of characters that will bring the right kind of atmosphere to my magical land. I write the scripts too, so that the characters can put on the best show possible for the many guests who will want to visit my land. The best part is that I can visit my theme park again and again. I can walk my favorite paths, enjoying the same scenery that delighted me the day before. I can hop onto the same rides that carry me to faraway places.
When I work on a scene, I am swept into that place. I am looking around at what’s going on. I am seeing the details. I am feeling the emotions of my characters. The more I describe it, the more real it feels to me. The story is something that is happening to me, rather than something I am merely relaying to others. I often feel like I’m taking a vacation whenever I work on my story. I get to explore and see new things. I get to experience the thrill of adventure, without having to worry about any actual harm coming to me.
Writing for me isn’t so much about escaping real life as it is about creating an experience that flavors my real life. When I can enjoy myself for a few hours in a futuristic world, I am able to emerge from that place with renewed vigor. I feel ready to tackle what lies before me. My imaginary world is a place that strengthens me and helps me cope with the difficulties of daily living. It provides me with the inspiration I need to bring a touch of creativity to every area of my life.
AS: Why is science fiction your preferred genre?
KB: I need to break that down a little more because science fiction can take on many forms, from space drama to juvenile adventure stories. I definitely prefer adventure stories written for children. That’s why I write children’s books. When I write for children, I’m not trying to aim a story at their interest level. I write to my own interests, which just happen to be the same as what a twelve-year-old likes. But beyond that, I am most interested in science fiction that is science based, especially if it involves futuristic inventions such as robots, space travel, or cities of the future. Anything that can take me into that setting is thrilling for me because I love to be immersed in that kind of advanced technological society where I am surrounded by scientists and their work.
I am also drawn toward stories that are fully detailed and realistically portrayed, even if they don’t happen to be science fiction. I loved James Herriot’s books for this reason. His stories about life on the farm have had a more profound effect on me than anything I’ve ever read. When I first read his book, All Creatures Great and Small, I dreamt about cows every night for weeks afterwards. That’s the power that kind of descriptive writing has on me. To blend that sort of realism with futuristic science fiction is the ultimate for me.
AS: How do you get ideas for your writing? What is difficult and what do you enjoy about the creative process?
KB: The creative writing process never ends for me. I have to carry around pen and paper wherever I go because I never know when an idea will strike me. My children got used to my strange driving habits from a young age. As I would drive about town, running errands, I would need to pull over to the side of the road multiple times before we got to our destination, just so I could jot down my thoughts. The story never leaves my mind. There are times when it’s very difficult for me to walk through a grocery store and think about what I need to pick up for dinner if I’m deep into my story. People will talk to me and I’ll look right past them without hearing what they’re saying. It’s like I have a running script going on in my mind at all times and I can only focus on that. That can be a problem at times. For that reason, I’ve forced myself into a routine for my writing. I now assign certain weeks for active writing and certain weeks for being more fully engaged with my family. But even during family time, I’m still spending a large portion of my day writing and coming up with ideas. I just try not to focus on it as hard as I do when I’m actively working on a story. I purpose myself to focus on others instead.
The easiest part of writing is editing what I’ve already written. I would spend all my time doing that if I could. I am the queen of the edit. I rework my writings until one would think there’s nothing left to rework and still I’ll rework it. That’s where all the fun is at for me, getting it to sound cleverer than it did the day before.
AS: In your blog, you mention that verbal communication is difficult for you. How do you deal with this challenge when it comes up in your career as an author?
KB: Right after I wrote my first science fiction story, I got the brainy idea to offer a creative writing class to preteens and teens. The idea struck me in a moment of inspiration, a moment that was quickly lost once people began signing up for my class. When the day came for parents and their children to arrive for their class, I panicked. Cars were pulling up in front of our home and people were making their way to our front door. I did the natural thing. I ran to the bathroom and locked myself inside, refusing to come out. After a long time in there, my husband began knocking on the door.
“You’re got to come out,” he said. “People are already seated.”
“Tell them the class is cancelled,” I said, panting for breath. “Tell them I’m sick. Tell them anything. I can’t do this. What in the world was I thinking? I must have been out of my mind.”
“You can do it,” my husband coaxed me. “Just come out. People are waiting for you.”
My husband persisted until I finally came out of the bathroom. I made up my mind to get through this nightmare somehow, but I promised myself I would never do something like this again. At the time, I had no ability to speak freely to people. My thoughts just didn’t form for verbal communication. I had trouble even answering questions. The only thing I could do was read word for word what I had typed up for my class. But even that I didn’t do well. I was so scared that I kept stuttering and gasping for breath. I also read my science fiction story to everyone, as part of what I offered in the class. I had no idea what their reactions were because I didn’t make eye contact with anyone. I just focused on the papers in front of me.
Imagine my surprise when the kids ran up to me afterwards and threw their arms around me, hugging me. “That’s the best story ever,” they began to say. “It felt so real.”
I was shocked at their response. Their words of affirmation did much to help encourage me, but it was years before I was willing to try something like that again. It was very traumatizing for me.
I’ve gone through a lot of training since then. I can now get up in front of people and speak with confidence. But I still have to read what I’ve previously written out in order to make sense and bring my point across. Occasionally, I can deviate from what I’ve written and speak off the cuff but those ideas often come from thoughts I had just a few hours before my speech. If I have enough time to prepare, I will memorize entire speeches. I’m so practiced at it that most people don’t know that I’m not speaking freely. In the past few years, I have received training to help me speak during interviews. I have people in my life who will sit with me and ask me one question after another. As long as the material is fresh in my mind, I do okay. And questions can be catalysts for promoting new ideas, which also helps me along. But it’s easy for me to lose my train of thought or mangle my answer. I have to put a lot of focus to it.
I recently was interviewed for a radio program. I knew I would not be able to spit out answers as fast as they would be asked. I wasn’t willing to rely on my verbal skills for something as important as a radio interview. So what I did was anticipate the kind of questions I would be asked. I wrote out the answers to them and memorized every word, which I then put onto cards. When the phone call came through from the radio host, I was prepared. I not only had the answers memorized, I had their positions memorized on the table before me. In an instant, I could locate the correct card, and know what the answer was for any question that the radio host asked. That technique probably wouldn’t work very well for a television interview. Verbal communication remains a challenge for me, but I manage it much better than I used to.
Stay tuned for Part II of this interview on Monday, August 15...
For information about Asperger's Syndrome, visit the Autism Society's Asperger's Syndrome Web page.
Topics:Living with Autism
August 10, 2011
By Autism Society
When George Hubbs’ 10-year-old daughter Shealyn was diagnosed with Asperger’s Syndrome, he knew he had to do something to raise funds and awareness. This weekend, the New Jersey resident will host a 72-hour radio marathon on his online radio station, Revolution FM. His goal is to raise at least $5,000 for the Autism Society. You can help his cause by clicking here to donate to this event.
As he prepares for the event, George took the time to answer some questions from the Autism Society:
Tell us about your daughter, Shealyn.
Shealyn is a typical 10-year-old happy-go-lucky girl who likes to play tennis (she even attended tennis camp this summer) and loves her pets, Harriet the hermit crab and Ralph the creepy, crawly scorpion. She is also creative with art and enjoys various styles of music.
What was your next step after learning she has Asperger’s Syndrome?
When I heard the results of the evaluation, my first reaction was “What does this mean and what do we do now?" Of course, I was very upset and scared too. But I took things in stride, educated myself as much as possible and really made sure she stayed on her routine. Getting the proper help, being educated as a parent and showing positive support are the most important things and key to making Shealyn comfortable with her condition.
Why did you decide to hold this marathon to raise funds and awareness for autism?
I wanted to come up with a way I could use our Internet radio station as a tool, not only to raise money, but also help spread awareness of autism. The topic, of course, is very near and dear to my heart now. Since the diagnosis, I have found that I know quite a few people who also have loved ones with autism, and that made it more of a mission for me.
What is Revolution FM?
Revolution FM is a non-profit online radio station that I started in March with a lot of help from good friends. I enjoy entertaining people, and this was one way I could reach out and share my love of music.
Why should people tune in? And what can they expect?
I plan on not only using the event for entertainment, but to raise awareness as well. People should tune in because it will be 48 hours of music of their choice by request and, at the same time, benefit a great cause. Hopefully, we will reach our fundraising goal, but even more importantly, give people a better perspective of what the Autism Society provides.
How is Shea preparing for the marathon?
Shea is very excited about the marathon and has been involved in the planning. She helped me make commercials advertising the marathon that are currently playing on air and even wants to be a guest DJ when it starts this Friday, August 12.
Why did you choose the Autism Society as the benefactor of your efforts?
When I started becoming familiar with autism, I found that even in this day and age with the Internet, it wasn't easy getting the answers I needed. That is when I came across the Autism Society website. This was also when I thought of the idea for the marathon.
Don’t forget to tune in August 12-14 to Revolution FM to support George and the Autism Society! Don't forget to DONATE!
Doug Levy raced from Seattle to Portland in early July and raised $4,000 and counting for the Autism Society in the name of his nephew Jason.
August 9, 2011
By Doug Levy
The Seattle-to-Portland (STP) bike race is one of the 10 largest in the United States. The Cascade Bicycle Club holds it each July and draws riders from throughout the United States and other countries. In 2010 and 2011, the STP drew 10,000 riders, and some applicants had to be turned away. In 2010, riders ranging in age from 9 to 87 took part in the race. Entrants ride at their own pace and have the choice of completing the ride in one day (15 percent of riders do this) or two (85 percent). The 2011 race, which was 204.1 miles long, was held July 9-10. The STP is also known for its scenery – it treats riders to stunning up-close views of Lake Washington, Mount Rainier, Mount Hood and the Columbia River.
I had ridden in the STP once before and decided to participate in the race a second time, partly to prove that I could do it after having had knee surgery in 2010. The other thing that drove me, however, was learning more about how many kids are now affected by autism. I read a recent article in PARADE magazine about autism, particularly about how hard it can be for kids with autism to get the help and services they need after they get out of school (read the article here). I asked my brother which organization would be most appropriate to direct contributions to in order to assist these individuals with training and employment placement post-graduation. He referred me to the Autism Society. It was then that I decided I could do something more powerful than simply write a check (though I did that also). I could, in fact, use my upcoming STP ride as a fundraiser for the Autism Society.
I am extremely proud to report that the “Pedal Power 4 Jason” fundraiser I organized through the Autism Society, and in Jason’s name, raised just a hair under $4,000! This contribution to the Autism Society was entirely electronic in nature, meaning there were no fundraising phone calls, letters or personal visits. I sent e-mails to friends, family and work associates. It’s humbling to know that nearly 100 people donated to the Autism Society through “Pedal Power 4 Jason.” One friend I haven’t seen in more than 20 years donated $250. A couple of people I have never met and probably never will meet went to my site and donated. Scores of others e-mailed to say that they have a relative or friend with autism. So many selfless people donated for a cause they believed in and for a young man in the Minneapolis/St. Paul area they will never personally know.
By the way, I finished the STP riding on an old 7-speed (most racers have 18- to 20-speed bikes or more!) and covering the 204 miles in about 21 hours, counting both riding time and food/rest stops. I did it over two days, riding nearly 120 miles the first day and the remainder the next. It’s hard to overstate how sore my rear end was and how my whole body ached. Yet, it is also hard to overstate how gratified I was by the generosity and heart-warming response I received from so many. The funds raised are a testament to the power of giving, and hopefully will provide the Autism Society some new tools and assistance for the critical work it does every day.
Lastly, I am grateful that the Autism Society is shining a spotlight on the very impressive young man who was the inspiration for this effort – Jason Levy.
My Nephew Jason Levy
Jason is 22 years old. He was born in Minneapolis and graduated from the Skills for Tomorrow High School, a charter school in St. Paul, Minn.
The Levy family has a proud tradition of being sports fanatics, but I cannot imagine a bigger sports fan than Jason. He loves going to Minnesota Twins (baseball), Vikings (football) and Timberwolves (basketball) games, but I think the Twins are his #1 love. Jason has also attended many sports events in other cities in his travels with his family. On one of my visits to see my brother and his family, we counted the number of professional and college football, baseball and basketball caps that Jason has collected – well over 100! Jason plays sports as well.
Jason is employed by Merrick, Inc., in Vadnais Heights, Minn. Merrick, Inc., is a private, non-profit (501(c)3) licensed by the Department of Human Services as a provider of day training and habilitation, supported employment and adult day services. Each day, a Merrick van picks up Jason at his house and drops him back home after work. Jason loves his job and is considered a very hard worker.
Jason lives in North Oaks, Minn., with my brother Ivan and his wife Mary. He does his own laundry, writes out the family’s shopping lists, takes out the garbage and recycling, and is in charge of numerous other household chores.
There is another thing about Jason that tells you the kind of kid he is: He never missed a single day of junior high or high school. He also shows up for work every day, and is never late for anything.
I also vividly remember my sister-in-law Mary telling me about a time she took Jason to an appointment at school and was walking through the hallways with him. She was bowled over by how many kids came up to say “Hi Jason!” or offer other words of encouragement to him. I think it would be virtually impossible not to like Jason Levy.
Touched by this story? You can still donate to Pedal Power 4 Jason.
The Autism Society recognizes the power that 1 person, 1 organization, 1 idea or 1 event can have on autism. Today, with the prevalence of autism rising to 1 in every 100 American children, everyone can make a difference and support the 1 mission of the Autism Society.
Advice for Aspiring College Individuals on the Autism Spectrum
August 2, 2011
By Kerry Magro
Last May, I did something I had only dreamed of. When I was 4, I was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS). Almost 18 years later, I conquered my dreams by receiving a diploma from Seton Hall University. I still can’t believe this to be true, but I’m very grateful that it happened.
Looking back, I know I dealt with many difficulties along the way that have made me a stronger individual. I am thankful for the people who spent the hours working with me through physical, occupational, and speech therapies, who made something that seemed like “mission impossible” become possible. I know my family played a big part in where I am today by opening their hearts to me, and I would like to do the same for the readers who look at this blog today.
Each year I attended Seton Hall University, I knew that preparation was a big part to getting me to the next level. That meant knowing how to prepare. Today I’ll share with you some tips for how an individual on the autism spectrum can take full advantage of possible college opportunities that are present for them.
People tend to take the summer as a time for vacation and R&R, but the summer before going to college for the first time has to be a combination of work and play in moderation. The first step for everyone should be to make themselves aware and knowledgeable of their disability support programs at their college.
Your mission can be broken down into...
- Making sure you understand who the faculty members are for your program (director, disability specialist, etc.)
- Understanding what accommodations they offer (extended time on tests, private rooms for exam periods, individual note-takers, etc.)
- Finding out if there is a disability support student organization (important in regards to making sure students have a “voice” and community that can promote acceptance and diversity).
It should come as no surprise that some schools are more “disability friendly” than others, but the important thing to remember is that you receive all the reasonable accommodations that you are granted under the Americans with Disabilities Act. Parents and aspiring college students should therefore be knowledgeable of the differences that are shown between reasonable accommodations and an Individualized Education Program (IEP) that is offered from grades kindergarten through 12. An IEP does not exist in college, which can be a scary realization. Preparation for this transition becomes essential.
Your next step for the summer is slightly more generic; however you should make sure to reflect on your strengths and weaknesses as much as possible. Keeping a track of your evaluations from high school (grades, exit interviews, along with getting yourself a re-diagnosis, can show you where you have come from and where you should look to go in the future). Once you have all of your evaluations/assessments handy, you should take time reviewing these yourself and/or with your family and figure out what you need help with.
When I was going through this process, I noticed a big discrepancy regarding my verbal and math scores. My parents and I focused on this and tried to find out where this problem lied and how it could be assessed in a college setting. We came up with a system of using a USB recording device for all of my college classes (this became one of my first accommodations I asked for in college) and then came up with a schedule of listening to the recordings for a set time before/after that specific class. For others, a smart pen device (such as this one) may be useful, along with getting an accommodation to use a laptop with a built in microphone to record lectures. My advice for you is also to make an appointment to meet your disability support program faculty and share with them your high school performance records to see what advice they can give as well.
In addition, I need to strongly encourage the ability to self-advocate and prepare yourself for the unexpected. It’s up to the student to decide whether or not they want the parents to be involved in their academics in college (I had to sign a paper allowing my parents to talk to my advisors). Most faculties will promote the idea of self-advocating because, as young adults, they expect you to be adapting to more responsibility at the college level. Many, however, don’t realize that autism in itself is a communication/social interaction disorder and this may be difficult for some more than others. By being prepared, you give yourself that safety net that can help prevent you from burning out in the first few weeks.
- Figure out whether you would feel comfortable living in a college dormitory. With proper documentation, you can ask for a single room to make your transition easier!
- Speed Reading Courses (many are available at college institutions for students of all ages around the U.S.! You can also look for online video instructions, such as the one here)
- Asking for a learning buddy (an upcoming sophomore to help show you the ropes)
- Maintaining healthy reading and exercise habits (30 minutes a day for each) to keep the mind sharp in the summer
- Reaching out to local and national autism-related organizations (such as the Autism Society and Autism Speaks) to talk with experts in regards to self-help and support groups.
LASTLY: Prepare for a learning experience like you’ve never had! These past 4 years have been the best time of my life and they can for you, too! Always remember, no matter what, to put your best foot forward and take everything in stride. Mix work with fun and remember that autism can’t define you, only you can define autism! Be everything you can be and more, always!
*If you would like to contact me directly about questions/comments related to this post I can be reached at firstname.lastname@example.org or through my Fan Page.
Autism Society of Broward County, Florida, makes friends on the green
July 27, 2011
By Autism Society of Broward County
Do you golf? Middle and high school students with the Autism Society of Broward County (asabroward.org) have been golfing since November 2010 as a part of the program, Golfing Fore Autism. The teens participating have made substantial progress throughout the year in building their self-confidence and improving their social skills. Plus, it’s great opportunity to exercise, make friends and have fun!
The Autism Society of Broward County holds Golfing Fore Autism at the GB Golf Center at Cooper Colony Golf Club in Cooper City, Florida. The class is under the direction of PGA professional Gary Braeseke, or GB as he is known in the golfing community. Gary has been playing golf and teaching in the south Florida area for more than 20 years. Among his many accomplishments are: PGA Southern Chapter “Teacher of the Year”; three-time PGA “Junior Golf Leader of the Year”; Florida High School Golf Coach of the Year; and Golf Range Magazine's "Top 50 Golf Instructors." He has also qualified and played in the Doral-Ryder Open twice with some of golf's all-time greats.
But more importantly to the Autism Society of Broward County, they have found a pro who has embraced the concept of making golf accessible to people with autism. Gary is accepting and understanding of their kids, and has become an awesome adaptive golf teacher. They feel very fortunate to have him teaching their children.
What parents are saying:
“My son has attended the golfing clinic several times now; he looks forward to those Friday nights and has show marked improvement.”
“My son is a great kid, but his social issues make team sports very difficult. Golf has opened him up to a whole new sport, which he is not so bad at, and it makes him feel very good about himself, which no other sporting activity has done for him. He has asked to attend the junior golf program on Saturday and Sunday mornings to help improve his skills, and has even encouraged his father to learn a new sport, golf.... this may sound crazy, but for my son, who has Asperger’s Syndrome, these things are huge!”
“The Golfing Fore Autism clinics are great. The kids feel secure with each other because they are not judging or competing with each other. They socialize, exercise, laugh and learn together in a safe and secure environment at the Beautiful Cooper Colony Golf Club. Gary, the golf professional, is patient and encouraging while teaching this group of kids.”
The program was also featured on the front page of the May 2011 South Florida PGA Topics Newsletter.
What do you think, readers? Do you golf?
For more information on Golfing Fore Autism, please contact the Autism Society of Broward at http://asabroward.org/.
July 26, 2011
By Shary Denes
David Rubin loves his job. He is on the front lines of drumming up business for a screen-printing company in Staten Island, N.Y. His research skills and computer knowledge help his boss ferret out potential customers and donors for the nonprofit company, Possibili-Tees. He is a valued employee and gets high praise from his supervisor, Tom Siniscalchi, who rates Rubin as “excellent at his job.”
But getting to this point in his career has been a long road traveled for Rubin, 54, who has Asperger’s syndrome. “It’s incredibly hard being autistic,” he said.
Rubin describes himself as being of “normal intellect,” and in fact he earned a bachelor’s degree in English literature from the College of Staten Island, but neither gave him an edge during his many futile attempts to find and hold a job. After graduating in 1986, he quickly found himself in an exasperating impasse.
“Either I was over-qualified as a college graduate or under-qualified because I’m autistic,” he said. “I graduated college and spent the next 10 years being miserable.”
Rubin said his first intent after graduation was to become a teacher, but that did not work out. “I could not handle a classroom of kids, no how,” he said. “I was bounced out as being mentally incompetent. After that, I kept trying [to find work] one way or another.”
Among his numerous jobs was that of a telemarketer. “I called people up to ask how they liked this show or that product,” he recalled. But conversing with people and meeting quotas proved to be too stressful, and he was let go. He also worked as a messenger for about a year: “I worked with an ex-con who was developmentally disabled and an immigrant who could barely speak English. I was bored and rather humiliated there.”
Tedious, monotonous jobs frustrated him, but his autism and physical disability kept him from jobs that better suited his intellectual capabilities. “It’s kind of a hidden disability. If you have a broken arm, people can see it. With us, it’s very subtle,” he said of people with high-functioning autism.
The stress of a decade-long, disheartening job search landed Rubin in the South Beach Psychiatric Center in Staten Island with a nervous breakdown. That distressing event, however, became the turning point in his quest for employment.
Rubin got a part-time job at the center’s second-hand store tallying the day’s sales. Although the job was unchallenging and dull, it led him to Tom Siniscalchi and a new enterprise called Special-Tees.
Siniscalchi launched the screen-printing company in 1995 as part of a New York City Department of Health and Mental Hygiene grant awarded to the psychiatric center to employ people with mental health disabilities. Rubin showed up for an interview, bearing butterscotch candy for good measure, and was one of the original five employees hired. He and his co-workers were instrumental in helping Siniscalchi build the fledgling company into what would become a $1.1 million business.
No one, including Siniscalchi, knew anything about screen printing. “We started printing our first shirts, half of which were ruined,” Rubin recalled. “A local organization for the homeless loved us. They were constantly getting our ruined shirts,” he said.
Rubin made decent money, but was unhappy with his assigned task. “I was cleaning tools-- the squeegees we used to apply ink to shirts. It bored me to tears. It was insulting. I constantly complained, ‘Why is a college graduate doing this?’”
Nevertheless, Rubin stayed with Special-Tees for 14 years, primarily because he knew all too well from past experience that he had few options in the workplace. But that changed when Siniscalchi left Special-Tees to start a similar screen-printing business, Possibili-Tees, as part of the Mission of the Immaculate Virgin’s work-training program, and asked Rubin to join the new company.
Before making the move, however, Rubin made one thing clear to Siniscalchi: “I told him no more squeegee cleaning.” Instead, he said he wanted to work with a computer. “I told him that I can use the computer and I’ve been using the computer for fun for 20 years or so,” Rubin remembered. Siniscalchi agreed and Rubin joined Possibili-Tees in 2009.
“It’s a great job,” Rubin said. “For the first time in my life, I have a job that honestly suits me.” Other than a desire for more hours and a bump in his minimum-wage pay, Rubin said he is finally content with his work life.
“I was miserable for 12 to 15 years, but finally I’m with Tom,” he said. “I’m doing what I’m doing and, thank God, I’m happy."
Shary Denes is a freelance writer and editor in Sugar Loaf, N.Y.
Topics:Living with Autism
July 21, 2011
By Autism Society
Every adolescent must endure the trials of puberty. The physical and chemical changes of the teenage years take place in every person’s body, whether they have autism or not. Parents of children on the spectrum should be well prepared when these changes begin, however, as this stage of growing up is stressful for anyone, but especially for people with ASD who prefer predictability.
Learn how to help your adolescent with ASD through puberty with Puberty and Children on the Autism Spectrum, a free informational resource from the Autism Society’s Living With Autism series. This concise, informative guide has suggestions for preparing for and responding to the stages of puberty, including the development of secondary characteristics as well as the onset of menstruation or ejaculation.
Parents must be comfortable talking about body parts and actions using medical language, and sons and daughters need to know that their parents will answer any questions accurately and respectfully. Puberty is unnerving, but children will be more confident if they feel that their family is supportive and considerate of them.
Check out this free downloadable resource on the Autism Society's Resource Materials page. You must be registered and logged in to view the page.
Topics:Living with Autism
July 20, 2011
By Robert Naseef, Ph.D.
Times are changing, but most men have still been raised to hold in their emotions or risk ridicule. On Thursday, July 7, I had the privilege of moderating a panel on fatherhood at the 42nd annual Autism Society National Conference. The panel was made up of fathers with the courage to open up, along with autistic self-advocates and service providers.
As the fathers opened up, men and women in the audience listened intently. I shared how hard I had tried to change my son, Tariq, now 31. In the end, it was he who changed me and made me the father and man I needed to be.
Charles Jones shared his sadness and confusion about the diagnosis, his love for his son Malik and his joy in Malik’s progress. Charles is determined to make a difference in raising awareness about the needs of fathers. His voice came through with passion in the teaser for his documentary in production—“Autistic Like Me.”
Ven Squenzia is the father of a young woman with autism and president of the Florida chapter of the Autism Society. Ven cannot imagine who he would be today if his daughter, Amy, did not have autism. He is a tireless advocate for families, with countless friends and acquaintances in the autism community. He read a poem by his daughter expressing her love.
Dr. Stephen Shore, non-verbal until age 4, has fond remembrances of his father. Today, he is a professor of special education at Adelphi University and travels the world building autism awareness. He credits both of his parents for believing in him, although he wished his father had gotten more involved with his special interests in his youth. He also mentioned that when he was young, his father’s beard felt like needles and created what Stephen referred to as a sensory violation. Stephen’s web home is http://www.autismasperger.net/.
Alex Plank was diagnosed with Asperger’s at age 9. He is the creator of www.wrongplanet.net, a social networking site for people with Asperger’s, which has over 52,000 members. Alex shared some of his social struggles growing up with good humor. Like many young men on the spectrum I know, he wished his father had been more helpful to him about how to begin dating.
Craig Gibson spoke as a triple agent. He grew up with a learning disability, and openly shared how he was mercilessly bullied and how he relates to fathers’ worries about their children. He also has a son with a speech delay, and has served as the lead evaluator for a preschool program for children with special needs. Craig blogs regularly at www.autismspot.com and www.sensoryspot.com.
Dr. Diane Adreon has an adult son with autism and over 30 years’ experience working with children and adults with autism at CARD, the Center for Autism and Related Disabilities in Miami. She talked about the important leadership roles played by fathers in the autism community of south Florida. These men were open and comfortable speaking to her.
Speaking on behalf of the panel, I expressed gratitude for the opportunity for our voices to be heard. When fathers open up, everyone benefits. We will continue to express our vulnerable feelings and encourage others to do the same to help meet the needs of children and families.
Topics:Living with Autism
July 18, 2011
By Matthew Sharp, M.Ed.
Long days filled with activities. New smells and sounds, from the beach and boardwalk treats to fireworks and festive parades. Quality time with friends and relatives living outside the area. These may not seem like red flags to most people, but for children with autism the hallmarks of summer often invite unpredictability and stress, and impact not only them, but also their parents and siblings. However, with some simple planning, you can ensure that your child will not only be safe, but will also feel comfortable during the summer months.
Create a packing list, taking your child’s sensory needs into consideration. Where will he/she be staying? Should you bring along a sound machine to facilitate sleep? Involve your child by watching a movie or reading a story about your destination.
Create a schedule and review it daily with your child. Forecast any issues he/she may have and plan ahead so you can hopefully bypass them. For example, if you are going to have an unavoidably long day, pack something to entertain your child, depending on his/her functioning level. Also consider allowing your child to choose between two activities. Use a cell phone alarm clock to alert you to potty breaks and check-ins with your child.
To Grandmother’s House We Go
Carol Gray trademarked the term “social story” to refer to stories drafted for individuals with autism to familiarize them with social behaviors relevant to a particular environment. Create a social story or picture book for your child about his/her relative. This will help the child learn who the relative is and be more comfortable around another family member, making the visit more enjoyable for both parties.
On this type of summer trip, you may be able to exert more control. Contact the relative your family is visiting in advance of your arrival and share any specific needs or environment-related requests, such as sleeping and play spaces, as well as sensitivities to smell, sound, touch, etc. Use this conversation to familiarize your relative with your child if the two have not interacted recently. Most important, remember to be tolerant and have a sense of humor, particularly if you are guests in your relative’s home.
SPF + Schedules = Fun in the Sun
If your child will be enjoying outdoor activities like biking, swimming or summer camp, prepare him/her by practicing sunscreen application. Parents should seek an unscented, hypoallergenic variety that sprays on clear and should build time for applying sunscreen into the child’s schedule.
Ensure you have packed something your child will eat. If your child’s dietary needs permit purchasing food on-site, consider calling ahead to ask if the restaurant can accommodate food allergies and/or menu modifications. Then, practice selecting and ordering items, and use math skills to calculate the cost of the meal with your child.
Communication with Camp Counselors/Mentors is Key
While it’s beneficial for your child to have exposure to typical peers, make sure you have selected an inclusive, understanding summer program, staffed by camp instructors who are trained to work with children with autism. Share your contact information and ensure that the staff knows when—and when they don’t—need to check in with you. Provide camp leaders with a list of your child’s typical behaviors, as well as what they should and should not ignore.
Check if a mentor or buddy is available, typically an older child who can shadow your son/daughter and provide guidance when needed. Since children with autism often wander, pool safety is paramount. Make sure your child is supervised at all times when near water.
Create a Backup Plan
As holidays approach, develop two scenarios: Plan A if things go well and Plan B if issues arise. Consider an alternate activity for your other children, particularly if you need to act on Plan B.
Similar to the social story to prepare your child for being around a new relative, talk about the upcoming holiday ahead of time, sharing details about what will be happening (and why) with your child. Though it may mean a disturbance in his/her normal routine, try to make the holiday something your child wants to take part in.
OTHER SUMMER ACTIVITIES
Seek Out Community Resources
Whenever possible, create visual schedules to share with your child, showing everything that’s going on in his/her day or week. Utilize the local library, YMCA, swim club or extended school program to get your child involved in activities that provide learning opportunities.
Keep Learning Opportunities in Mind
Work with your child’s teacher in May and June to develop learning packets and activities you can complete with your child over the summer. Remember the importance of unstructured time as well, and set up a safe play area where your child can relax while you take a break.
Planning ahead, creating and sticking to a schedule, building in breaks, allowing for choice and understanding/anticipating your child’s sensory needs will help ensure that summer is an enjoyable time for the entire family.
About the Author
Matthew D. Sharp, M.Ed., is the Principal of Early Education Programs at New Jersey-based Bancroft. Matthew has worked as a formally trained special education teacher and administrator for 15 years. He came to Bancroft in 2005, augmenting his previous experiences as a public school special education teacher and principal of a school he helped build from the ground up to serve at-risk children. Matthew is currently a second-year student at Rowan University, pursuing his doctorate in education. He can be reached at 856-354-2962 or email@example.com.
Bancroft (www.bancroft.org) is a leading provider of programs and supports for children and adults with intellectual and developmental disabilities, autism and acquired brain injuries. Bancroft strives to ensure that every person is given opportunities for lifelong learning and fulfillment. The organization does this by altering perceptions and supporting people with neurological challenges in achieving their life goals. Programs and supports include early childhood, education, vocational and supported employment, structured day, rehabilitation, community living and behavioral treatment, as well as in-home and outpatient services.
Topics:Living with Autism