Perspective:
Dads that Do: Honoring the Contribution of Fathers Everywhere

by Aaron Steeves

Aaron Steeves lives in Gainesville, VA. He is the father of Cameron, a child with autism, and has been a long-time OAR supporter and volunteer, helping staff with technical issues and participating in various fundraising events.

Writing about what it means to be the father of a child with autism, Aaron Steeves says that "there isn’t a day that goes by that I am not proud to be [Cameron's] dad."

As fathers, we all dream of the successes of our children.  Whether it’s Little League, soccer, the spelling bee, or Boy Scouts, there are a lot of activities that other fathers support their kids in that we as parents of autistic children cannot.  Where some parents spend their time selecting schools based on athletics or academics, we get to pick them based on special education programs and services.  About the time those parents are helping their kids pick out their first car, we’re starting to investigate residential treatment options.

As the father of a child with autism, I salute all the fathers out there who strive to be the best parents they can be to their children. I raise my hat to the siblings and mothers in families with children with autism too. Being part of a family with a child who has challenges requires sacrifices and extra effort from everyone. When parents—mothers and fathers—can make everyone in their families feel special, valued, and loved, we should pause for a moment to honor their accomplishments.

The fathers of children with autism contribute to making their children’s lives as good as they can be in a variety of ways, often helping other children with autism and their families in the process.  Some help to raise awareness.  Some lead or participate in fundraising efforts.  Others devote their time to advocacy or education.  Some are instrumental in research and treatment. 

Cameron Steeves, says his dad, has a great sense of humor and notices many things that most people wouldn't, including how many restaurants between Alexandria, VA, and Ocean City, MD, have ceiling fans.

My son, Cameron, will be turning 18 later this summer.  While he hasn’t tried out for basketball or the debate team, he does know the name of every single Thomas the Tank Engine character, and so do I.  He has a great sense of humor…he calls me Ren and I have to call him Stimpy or he won’t continue the conversation.  He knows the name of everyone’s cat, past and present.  He has no idea what team won the Superbowl, but he will find out which relative you have lost, even if he has to go back to great-grandparents, and that’s how he’ll greet you from then on – “Hi, Bob.  Your aunt is in heaven.”  Very strange, this boy of mine.  But at least I know how many restaurants between Alexandria and Ocean City have ceiling fans, and which ones are broken.  I will never miss a flag flown at half-staff if Cameron is with me.

Cameron’s autism was diagnosed a bit late--he was 5 or 6. He developed quickly and perfectly up to about the time he was 18 months old.  When a fascination with all things spinning and a complete lack of interest in the television seemed to hit at the same time, we started noticing other symptoms, but doctors were reluctant to label him.  His mother, Michele, and I never married and lived apart. We worked as a team, however, through the doctors’ appointments, parent support groups, therapy, and school meetings.  She got heavily involved in his ABA program.  

I became one of the dads I describe in the paragraph above.  I scoured the Internet; called across the country; and traveled to other states to see how others were learning, coping, and just plain getting by.  There were no OAR guides for parents then.

We tried special diets--not just gluten and dairy-free--but egg-, nut-, and pigment-free as well.  Cameron spent his childhood free of cookies, chocolate, and peanut-butter sandwiches.  I got a copier donated to a nutritionist in South Carolina so she could promote the diet she was having success with.  I lobbied ConAgra and ADM to fund gluten research. We tried pharmaceuticals like Ritalin and others and tried to control aggressive behaviors. 

Ashamed as I am to admit it, after a biting incident at school when he was 10, we put him in a psychiatric hospital for a time.   My advice to parents reading this is to avoid this option if at all possible.  It seemed we were not destined for any degree of normalcy unless it was his decision.  We were, it would seem, cursed by autism.  Little did we know it would prove to be a blessing.

About the time that Cameron got out of the hospital, his mother started noticing that the arches in his feet were very exaggerated and that he was having trouble walking.  We figured it was no big deal.  Living in the nation’s capital does have some benefits, like Children’s National Medical Center and Johns Hopkins University Hospital up the road in Baltimore. We’d see to it that he got his feet fixed.

We were not prepared for the diagnosis we got two days before Christmas of 2002: a form of muscular dystrophy called Friedrich’s Ataxia, which is progressive, degenerative, debilitating, and, ultimately fatal. Eventually, it would rob Cameron of the use of his legs, and someday his heart or lungs. 

Priorities, shall we say, changed overnight, and his autism program got put on the back burner while we shifted our focus to learn everything we could about this condition.  It is genetic and both parents have to carry the gene, so there would be no finger pointing or suspicion of environmental or dietary issues.  And, like autism, with which we were very familiar, this too has no cure.  The prognosis is uncertain as far as time-frame. Most kids that suffer from this only make it to 15 or 16. Cameron, however, has a 32-year-old cousin who has it, so we are hopeful that he will continue to stay ahead of the curve.

Cameron has dealt with this entire scenario with a newfound lucidity, patience, and positive outlook.  He knows what is happening.  He doesn’t want to die.  But, thankfully, he does not, maybe even cannot, dwell on it.  While this would devastate most kids, autism has provided Cameron with a buffer.  It has taught his mother and me to discuss certain things in private that we used to discuss in front of him, as it is obvious he gets more than he lets on.

He wasn’t robbed of the dream of being a first-round draft pick or competing on “Dancing with the Stars.”  He still can play with his trains, eat his chicken fingers and French fries, and drink Sprite.  And though he won’t be dancing at the prom, he isn’t depressed about it, either. He may never have a real adult relationship, and for that matter may never have the stress of paying a bill, holding down a job, or being responsible for the roof over anyone’s head.  And he still wants to know all about your cat.

No one is promised a family of healthy children. When we are blessed with healthy children, we are truly blessed. But sometimes blessings come to us in ways that we don’t recognize right away. Cameron has a full plate. And his mother, stepmother, and I have our own full plates to juggle as we support Cameron and find ways to give him a good full life. Despite that juggling, there isn’t a day that goes by that I am not proud to be his dad.

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NYCA Gift Targets Programs and Opportunities for Adults

In April, the New York Center for Autism (NYCA) hosted “A Night of Too Many Stars,” a comedy gala featuring an array of leading comedians.  The event raised more than $2 million, which the NYCA will use to support its Charter School, other New York City autism programs, and some projects of high interest to the NYCA and the autism community.  One of those projects entails a comprehensive overview of program options and opportunities for adults with autism, a topic the NYCA and OAR, through OAR President Peter Gerhardt, Ed.D., have been discussing for the past year.  Thanks to those discussions and the success of “A Night of Too Many Stars,” the NYCA has just awarded a $50,000 grant to OAR to undertake this project.

“The NYCA and OAR share a strong interest in quality of life for adults on the autism spectrum,” says Dr. Gerhardt.  “We are thrilled to receive the NYCA’s support.  This grant provides the funds for us to produce a comprehensive guide to adult living that will be a ready reference for adults with autism and their parents.”

After the initial research is completed, Dr. Gerhardt intends to present the overview as A Guide to Employment, Residential and Community Supports for Adults with ASD, the sixth publication in OAR’s highly regarded Life Journey through Autism series.  As with the previous guides, this will be a straightforward, easy-to-read publication for parents, educators, and service support staff that will address the service needs of adults with autism as they age out of the educational system and live lives as active and involved community members. The guide will also:

• Provide an historical overview of the service delivery systems
• Identify the current array of potential services in the areas of employment and day programming
• Describe and discuss residential models, services, and supports
• Describe and explain the importance of effective community involvement
• Provide information related to long-term funding, staff recruitment, training and retention, and the needs of families of older learners with autism
• Offer a list of resources

“We already have a working outline and plan to present the detailed overview to NYCA in November,” explains Dr. Gerhardt.  ”After that, we will publish the new resource guide in the first half of 2009.”

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News from OAR

Chairman's Dinner Sets New Mark

OAR President Jim Sack gathered together friends and business associates for the seventh annual Chairman’s Dinner on June 10 and shattered all previous attendance and fundraising marks.  Almost 150 people turned out at Fleming’s Steakhouse in Tyson’s Corner, VA, for an evening of great food, wine, and camaraderie, which reached its high point when Sack once again took on the role of auctioneer.  By the time he was through and counting ticket proceeds and donations, the dinner had raised more than $82,000 for autism research, besting the previous high by more than $10,000.

“It is always gratifying to see the response of my friends, family, and colleagues when I ask them to support OAR,” says Sack.  “They care and are generous beyond words but what I look forward to most each year is seeing the people I like and love gathered in one place to have a good time.”

The highlight of the dinner occurs when Sack assumes the role of auctioneer, which results in as much humorous banter between him and friends as it does bids.  Auctioneer Sack had an impressive array of auction prizes that included a week at a luxurious beach house in Hilton Head, SC; a baseball autographed by Red Sox pitcher Curt Schilling, with an OAR-provided replica of “the bloody sock;” a chrome NASCAR helmet autographed by Darrell Waltrip; a weekend sailing getaway cruise on the Chesapeake Bay; a golf outing; and ticket-and-dinner packages to a New York Yankees game in Yankee Stadium, an Orioles game at Camden Yards, and this year’s Navy vs. Notre Dame football game to be played at Ravens Stadium in Baltimore. 

With this year’s record-breaking success, the Chairman’s Dinner has now raised more than $400,000 for autism research since 2002. Proceeds from this event support OAR’s research and autism information programs.

Broadway and OAR Meet in Other Voices Solo

On June 2, 2008, OAR welcomed a cast of Broadway performers and introduced one special bluegrass band at Other Voices Solo, a cabaret show in the heart of New York’s theater district to benefit autism research.   More than 175 people joined OAR at Carolines on Broadway to enjoy an evening of entertainment, comedy, and song and help OAR raise almost $35,000.

Begun 11 years ago as a fundraiser for autism and a vehicle to showcase Broadway performers, Other Voices has supported OAR since its founding in 2001. John and Jan Maltby, who have an adult son with autism, created the show. Jan was a founding member of Shotgun Productions, a not-for-profit theatrical production company dedicated to showcasing emerging artists through the development of new works. John was the president of the Autism Society of Manhattan at the time Other Voices began.

The title Other Voices goes back to the very first show held then--and in every year since--on Monday night, when the lights are traditionally out on Broadway.  The cast of performers were aspiring Broadway understudies.  Thus came the inspiration to feature the voices and talents of relative unknowns to raise money, lend inspiration, and figuratively give voice for an evening to the 1.7 million children and adults with autism in the United States, many of whom literally cannot speak.

Following cocktails and dinner, four-time host Todd Alan Crain took over as emcee.  The show opened with a musical comedy performance by Broadway performers Jim and Bob Walton, each with a long list of Broadway credits. 

The Waltons were followed by a special performance by Audrey Flack and the Art Officials.  Flack, a renowned painter and sculptor, and her husband, Bob Marcus, are long-time supporters of OAR and Other Voices. Only this year did OAR learn about her musical talent and her band, the Art Officials, colleagues from her area of the arts.  The group performed several numbers, each telling a story about a famous artist, and finished with a song with lyrics about autism written by Flack and for which Flack’s daughter, Hannah Marcus, joined her on stage.    

The second half of the show featured Tony Desare, a critically acclaimed pop/jazz singer, songwriter, and pianist, and Angela LaGreca, an award-winning comedian and singer (and a writer and a producer at NBC’s “Today” show in her everyday profession). 

The final performer and show stopper was Liz Callaway, a Tony nominee and Emmy winner with an incredible voice and illustrious Broadway resume.  Liz is the singing voice of the title characters in The Swan Prince and the Oscar-nominated Anastasia, but is perhaps best known for appearing on Broadway as Grizabella in Cats for five years.

The show was organized and produced by Shotgun Productions, Inc., under the direction of Stewart Schulman, who has performed that role for all 11 Other Voices shows.

Event co-chair and OAR Board member, Lori Lapin Jones, summed it up, “It was the best show yet,” she says.  “The performers were outstanding.  Everyone had a good time and, most important, we raised enough money to fund one of our new research studies.  That’s success by any standard.”

OAR Welcomes a New Staff Member

Jessica Hopey recently joined OAR as the RUN FOR AUTISM coordinator. It was a natural fit for her after a job as assistant fitness coordinator at Penn State University. She is pleased to be working for “an organization committed to positive change and dedicated to impacting the day-to-day quality of life for others.” So far, Hopey says, she has most enjoyed learning about the RUN FOR AUTISM participants and hearing their personal stories and motivations for supporting autism research.

Intern Jessica King (left) poses with Jessica Hopey (right)

Intern Jessica King Enjoys a Summer of OAR

Jessica King, a University of Virginia student who is getting a bachelor’s degree in biology and a master’s in elementary education, is enjoying her summer internship in OAR’s programs and research departments. She says OAR suits her to a tee. “I had learned a lot about children with autism and other learning disabilities in a class I had taken for my elementary education degree, so when I was looking for a job I researched organizations for autism in the DC area. I found OAR, which combined research and education, which was perfect for me.” She started work on June 1 and will be with OAR until the beginning of August.

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Focus on OAR Research

Learning to Share: Teaching Children Joint Attention

Dr. Jennifer Durocher appears recently on South Florida's local news station, NBC6

“The ability to share experiences with others is the foundation for language and other social skills,” says Jennifer Stella Durocher, Ph.D., clinical assistant professor of psychology at the University of Miami and assistant director with the Center for Autism and Related Disabilities (CARD) at the university. “With joint attention, children learn in less structured environments, when they’re playing with other children, for example. Having that skill is linked to long-term outcomes.”

It is a skill that many children with autism need to strengthen. “Typically developing children are hard-wired to share with others. In children with autism, however, there’s a lot of variability in how good their joint attention skills are. It’s not so much a lack but a reduced frequency compared to typically developing kids,” Dr. Durocher notes. Children with autism often aren’t socially motivated. “If you don’t find adults interesting, you don’t find what they are paying attention to interesting. And you won’t exhibit that skill of joint attention.”

Her one-year OAR-funded research project is designed to teach children with autism joint attention. “Not many people have studied how to intervene with that skill. It’s hard to conceptualize how to teach a child to be motivated to share experiences.” Dr. Durocher hopes that her study can help teachers, parents, and others to do just that.

How The Study Works

The study is a randomized control study to evaluate the efficacy of a joint attention intervention for 40 children with autism spectrum disorders (ASD) between the ages of 2 and 5. The children will be randomized into either a treatment or a “wait list” control group. The treatment group will receive 16 intervention sessions over eight consecutive weeks, which will target the ability to respond to and initiate joint attention bids with the therapist. Between-group comparisons will be conducted at pre-treatment, post-treatment, and three-month follow-ups to assess treatment effects. A parent-child play task during follow-up assessments will allow for evaluation of generalization of treatment effects within caregiver-child interactions. All control children will be enrolled in the intervention condition after their three-month assessment is completed.

“During the sessions, the children will have the opportunity to engage in three different behaviors,” explains Dr. Durocher, “shifting their gaze between an object and someone in the room, pointing to objects to show someone, and showing objects to others.” Two research assistants will work with each child during the session. A data sheet provides assigned skills in random order so that in one minute the research assistants may try to get the child to shift her gaze and, in another to point. Equal numbers of points, shows, and gaze shifts are included in each 15-minute block.

The child will play with whatever toys or objects she wants to while one of the interventionists will try to get the child to do one of the skills. The interventionist might say something like, “Look at the car go,” if the child is playing with a toy garage. If the child doesn’t do the skill spontaneously, the interventionist presses harder for the skill, with a comment that may be something like, “What are you playing with? I’d like to see it.” If there’s still no response, then the interventionist may ask to see the car.

The reason there are two research assistants working with each child, explains Dr. Durocher, is so that the second one can actually prompt the child. “For example, she might say, ‘Paul wants to see the car,’ and then she can help the child show Paul the car.”

An intervention takes place each minute, and the research assistants record whether the skill was spontaneous or prompted. “Regardless of whether it was spontaneous or prompted, the child is getting praise for engaging in the skill. The research assistant will also record whatever the child does even if it isn’t what we’re working on.”

Dr. Durocher says the study was designed so that children are strongly motivated to do the skill. Parents will pick from a list of social reinforcers—like hugging, clapping, praising--before their child begins. They’ll pick 5 reinforcers and rank them from least to most preferred, she explains. Then the child will be asked to push a button. If he does, he gets one of the social reinforcers. If he pushes the button again, then researchers know the child likes that particular reinforcer. “We’ll use those reinforcers during the sessions with the child.”

Study Goals

She hopes that the study will provide a method for clinicians, teachers, and parents to teach joint attention. She also has designed the study to determine if specific interventions cause a child to learn joint attention and what type of children will benefit most from this type of intervention.

“We created the wait list specifically so that we could tell if the intervention works. We’ll be able to compare the kids who got the intervention immediately to those who got it later. We also want to know what traits, beyond language and cognitive level, will predict better response to the intervention.”

Dr. Durocher plans to disseminate the study’s findings through the CARD website and newsletters as well as at conferences. She also plans on holding trainings for parents and professionals, based on the project’s outcomes.

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RUN FOR AUTISM NEWS

TRI FOR AUTISM Promises More Athletes and More Funds for OAR in 2008

Join Us and Tri for OAR

In 2007, OAR partnered with the Virginia Triathlon Series as its Official Series Charity to launch the TRI FOR AUTISM program to complement its already highly successful RUN FOR AUTISM.  A small contingent of 12 triathletes competed in three or more of the series' 20 events to raise more than $18,000 for autism.  In addition, Set Up Events Race Director Greg Hawkins donated reserved charity registration fees from another 75 athletes totaling $7,500 to generate $25,000 in TRI FOR AUTISM’s first year.

The 2007 program became an immediate draw for 2008 competitors. A number of people registered for races and began fundraising before the series kickoff in April. Joel Pearson, Tom Steinbach, and Russ Stockton have committed to race in the Virginia Series and raise money again this year, joined by Sean George, Peter Gretz, Tyler and Laura Potter, Clay Richardson, and Bill Vickery who will be competing in at least one event with the TRI FOR AUTISM program.

Melinda Hungerman Johnson, posing here with her husband, Brian Johnson, competed in her first triathlon in Lynchburg, VA, and raised almost $1,700 for OAR.

Melinda Hungerman Johnson, who competed in her first triathlon in Lynchburg, VA, and raised almost $1,700 for her effort, was among the first TRI athletes to compete this year. She had a great experience and plans to do a few more races later in the year for the TRI FOR AUTISM.   

Michigan resident Sarah Young is coaching a group of East Coast friends and they will take on the Patriots Triathlon this September. The race has a distance for all with sprint, middle (Olympic), and Half Iron events that will also serve as the state’s Club Championships. TRI FOR AUTISM should have a good showing as team members will do a swim in the James River, bike through historic Williamsburg, and run the Colonial Parkway.          

The Virginia Triathlon Series is not the only way to TRI FOR AUTISM. Eric Russell Webb from Davis, CA, will be competing in Ironman Switzerland on July 13. While training for a 2.4-mile swim, 112-mile bike, and 26.2-mile marathon, he also raised almost $2,000 for his ultra-distance challenge. Matthew Bydalek will also be taking on the challenge of a long-distance triathlon competing in the Florida Half Iron Challenge this October.

The 2008 TRI FOR AUTISM program is already poised to be even more successful than last year. We hope this will encourage current and would-be triathletes to join the crowd and raise money for autism. OAR will be here to support you! OAR and Set Up Events will provide a complimentary entry for any VTS race if you want to participate. As the Potters say so well on their Web site, “The research is needed so don't give because we decided to go for a swim and a bike ride and a jog.Give because there are kids out there who need our help.”

You can find out more about the TRI FOR AUTISM Program on OAR’s Web site at: http://www.researchautism.org/news/run/tri/index.asp.  If you have your own race picked out, considering doing your own TRI FOR AUTISM and let us know what it is so we can provide support.

Cleveland Welcomes RUN FOR AUTISM

In May, OAR added Cleveland and the Rite Aid Cleveland Marathon to its growing list of RUN FOR AUTISM charity races.  Despite a relatively late entry, OAR fielded a team of 11 runners and left with a promising list of people interested in being part of OAR’s team next year.

OAR had runners in each of the Marathon’s three races: marathon, half marathon, and 10K.  Jim Doran, the only marathoner, set a personal best, breaking four hours. He now has his sights set on Chicago or Akron later this year.  Greg DiStefano set a blistering pace in the half marathon, finishing in 1:18 despite the cold, rainy conditions. Tique Oeflein, running in honor of her son, led the way in the 10K race for OAR’s team. Oeflein, Doran, and Ken Chick finished as OAR’s top fundraisers for this first Cleveland event.

OAR’s success would not have been possible without the support of ASA Ohio, ASA Greater Cleveland, Milestones, OCALI, and the Cleveland Women’s Journal, whose help in publicizing this first RUN FOR AUTISM – Cleveland and providing volunteers for the Runners’ Expo and on race day was invaluable.

Next year’s marathon is Sunday, May 17.  Based on the enthusiasm of this year’s runners and the number of people expressing interest in next year’s race, OAR is looking forward to fielding a team of 25 or more runners in 2009.  For information on the next RUN FOR AUTISM – Cleveland or other opportunities to be part of the 2008 RUN FOR AUTISM team, visit OAR’s Web site, www.researchautism.org, or contact OAR’s Run staff at (866) 366-9710 (toll-free); e-mail: run@researchautism.org.

Running, Riding, and Rocking: How the Rayburn Family Raises Money for OAR

It’s the Marine Corps Marathon of Rensselaer, Indiana—a much-anticipated event that brings out athletes of all sizes, shapes, and abilities along with supporters, friends, and families. They call it Chloe’s 5K Run/Ride/Rock for Autism, and in 2008 they rocked, rode, and ran for OAR, raising more than $5,000 in the process.

Why do they do it? Well, first of all, it’s fun. Second, they like the Rayburn family and the event started with them although Susie Rayburn is clear that it wasn’t her idea or her husband’s idea either.

“Jeff and I are in a Christian band. They came up with the idea after Jeff ran the Chicago Marathon for OAR.” From start to finish, Susie says, planning took them four weeks. They held a concert featuring several local bands, including their own; a 5K run; and a motorcycle event. “My head was just spinning, but we raised $2,200.”

Chloe, who provides the inspiration and energy for the event, is the Rayburns’ 11-year-old daughter. “When Jeff started training for his first marathon two and a half years ago, he noticed that he could raise money through the event. When he looked at the possible beneficiaries, OAR jumped out at him because Chloe has autism.” The Rayburns’ son, Zach, 15, plays an equally important role, acting as his mother’s assistant and recruiting his friends to help. “Zach helped and ran last year. This year, he was my helper. When I need something, Zach does it. His friends help in some capacity or another.”

In fact, everyone who knows the Rayburns finds some way to contribute. “Our friends constantly ask for posters and send out e-mails. A lot of our local businesses are corporate sponsors and we even have some individuals,” Susie says. About 100 people walked or ran in the event in May and slightly less than 30 motorcyclists took part.

Everyone gets a t-shirt and Susie reports that OAR provided medals for participants this year. A local jeweler engraved the date on the back of each medal.

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SALUTE:
Working to Give Kids with Autism the Best Opportunities: Marcy and Artie Kempner Lead the Way

“We don’t do this for Ethan. He motivates us, but we don’t do it because of him,” says Artie Kempner, as he explains the dedication, creativity, and thousands of hours of work he and his wife, Marcy, have put into the Autism Society of Delaware (ASD).  Ethan, 13, the third of the Kempners’ three sons, was diagnosed with autism as a toddler. It is clear that his parents love him and his brothers, Matt, 15, and Jack, 12, very much as they tend to the boys while being interviewed.

The Kempners can take care of what Ethan needs, Artie says, but that is not true for many parents of children with autism who may not have the access or the means to provide everything their children need. And the reality is that Ethan needs more than just what the Kempners can give him, his father goes on to say. “He needs more than just us. He needs community, people who understand him and are willing to embrace him. That’s what Marcy and I want for Ethan and others with autism—the ability to thrive in their communities. That’s why we do this, for all people with autism and to work toward their full inclusion in our communities.”

“If we don’t work on behalf of our kids, they won’t have the best opportunities,” says Artie. “One of the problems for people with autism is that families who can provide for their children insulate themselves. But that’s not helpful to the community as a whole. There’s strength in numbers. If everyone who has children with autism comes together and brings people they know from outside the autism world, then we’ll achieve real success in making people with autism a part of the communities in which they live. Mike Maloney is a great example of someone who doesn’t have a family member with autism but who is passionate about advocating on behalf of people with autism. I got drafted into my role, but Mike and others like him are the kind of people we need to achieve the success we’re looking for.”

A Powerful Position

Bringing together parents, people with autism, and advocates in the community is something that ASD has always championed. Its newest program, and possibly its greatest legacy, say the Kempners, is one that gives people with autism the chance to have jobs, make choices, and thrive once their school years are over.

Aptly named POW&R, which stands for Productive Opportunities for Work & Recreation, the program started in August 2007 after extensive research to uncover best practices for adults with autism that included site visits and telephone conversations with organizations across the country.  The program offers job training and placement, helps families to understand living arrangement options, and connects clients with recreation opportunities. “We have seven young people enrolled in the program and they all have jobs and are living the kind of full lives we dream of for our children,” says Marcy.

While POW&R may be ASD’s most important legacy, the Kempners note that it certainly isn’t the only one. “At the beginning especially,” says Marcy, “the level of communication we could provide parents and professionals through our website and newsletter was important.” And it still is one of the organization’s crucial roles.

Begun in 1998, the organization has grown from a support and advocacy group into a full-service organization, notes Artie, an accomplishment that he says has taken the work and contributions of many people. “In 2002, we hired our first executive director, Theda Ellis. Going from a volunteer group to a professional organization under Theda’s guidance was such a positive change for us.”

Artie points out that the organization has also been able to create partnerships with other autism and disability organizations in Delaware, which provides a unified voice for advocating to state government. “We’re going to have an office of autism in the state. Theda took the leadership role in making that happen,” he explains.

A Labor of Love…And Golf

Marcy and Artie have been involved with ASD since the very beginning. “We were part of a group of parents associated with a school,” Artie says. They were lucky, he explains, to have the top public school for children with autism in the country nearby. “My concern was that we needed to keep that school running well and advocate on its behalf and on behalf of the children who attended.”

“A lot of things at the school were great,” Marcy says, “but I wanted more than just the school. I was eager to share with other parents about things like how you feel when your child is first diagnosed, who’s using what diet, and all of the other questions parents need to ask and talk about.”

The school’s parent advocacy council had limited resources and had to focus solely on the school program. The Kempners and other parents stepped in to fill the void. Artie served as the organization’s first president, a role he took on a second time with a term that ended last year. Marcy has filled a number of roles over the years, including acting as chair of the strategic planning, fundraising, and public relations committees. Today, she is the organization’s secretary.

One of Artie’s favorite roles has been chairing the Drive For Autism Celebrity-Am Golf Outing, which has grown like the proverbial field of dreams into a star-studded fundraiser for ASD. Through their professional affliliations, both Artie, who is the coordinating director, NFL/NASCAR Fox Sports, and Marcy, a freelance producer/director with CBS Sports and Fox Sports, invited professional athletes to the tournament and have brought in a variety of corporate sponsors.

The inaugural event in 2002 featured one celebrity, PGA Tour player Jeff Sluman. Last year, 60 celebrities from the sports and entertainment world participated, including Troy Aikman, Darrell Waltrip, and Jimmie Johnson. “We were fortunate to partner with MBNA in 2003 on the event,” Artie explains. “As hard-driving as they are in business, they’re equally hard-driving in their community service. They also had contacts with athletes and NASCAR drivers.”

The first year, ASD raised $23,000. In 2008, the organization raised more than $550,000. “We’re pretty proud of what this money can do for the autism community,” says Artie. Because none of the celebrities are paid, expenses are pretty low so “we can put a significant amount of what we raise toward research, and that includes funds for OAR.”

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