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April 2009 |
Message: Unmatched Value at an Unmatched Price
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Michael McKee Executive Director, Virginia Institute of Autism |
As a partner in the CDC’s “Learn the Signs. Act Early.” Campaign, the Virginia Institute of Autism (VIA) is committed to promoting early diagnosis and intervention and to providing high-quality services to those in need. We operate a school program as well as outreach services reaching families throughout Central Virginia.
Much like any other educational nonprofit organization, VIA’s challenge is to offer high-quality services and programs while relying on charitable donations to subsidize services and achieve a margin of excellence through continuing education for our staff.
That’s why OAR’s annual conference is a central component of our staff development program. Over the last five years, VIA has sent more than 60 staff to OAR’s conference at a cost that is a fraction of what comparable continuing education programs charge. Without OAR’s reduced fees for workshops led by world-renowned leaders in the field of autism treatment, we would not be able to continue to send as many staff as we do, and that would have a negative impact on staff development and, ultimately, on the quality of services we provide.
VIA is not alone. Countless schools and organizations in Virginia, Maryland, and surrounding states rely on OAR to provide access to a level of quality in continuing education that is otherwise not available in our region. The affordability of the conference makes a huge difference to small nonprofits and public schools alike.
As an administrator, I most appreciate the value our staff derive from the high caliber of the speakers and presentations. The conference offers them opportunity to place their own work into the larger context of evidence-based practice. They know from their own training, reading, and practice that what they do works. But to hear explanations of research that affirm and explain the effectiveness of the strategies they employ is very reinforcing to them, especially when parents press them on alternative interventions.
For me, it’s not only the sessions themselves but also the ability to meet and interact with other school and program directors. Having the opportunity to network with people who do the same kind of work I do has been the best part of the conference for me.
Both my staff and I benefit from the access the OAR conference gives us to the leading researchers and experts on autism and education. In Virginia, we don’t have the same access to thought leaders in the field as do our colleagues in the Northeast. OAR gives us the ability to learn about far more established programs.
I encourage parents to go primarily to develop better insight into autism and effective interventions. Yes, the presentations may be technical. But if they take the time to understand a little more about the science behind interventions that work, they will hopefully spend less time chasing interventions that don’t work.
The OAR conference also opens up a chance for participants to learn informally from other professionals and parents. Plus, exhibitors offer services and materials that are consistent with the conference’s focus on evidence-based practice. The OAR staff goes out of its way to make the experience easy and enjoyable. Attendees also take home a lot of materials, including copies of all presentations and relevant handbooks.
When I think back on all of the OAR conferences I have attended, I realize that I can’t single out one presentation or session as memorable because all of them have been memorable. They have all offered me something I can use in my work. That spells out why you will see me at the OAR conference again this year, soaking up the knowledge and practical information that will help me support my staff and offer our students and families the latest in evidence-based practice.
OAR to Launch Latino Outreach 2009 in Houston
L.A., San Diego, and Washington, DC to Follow
In 2007, OAR introduced a Latino Outreach program that targeted promotoras, front-line, lay caregivers found in many Latino communities. The program consisted of a one-day training program designed to provide promotoras a working understanding of early childhood developmental milestones and the warning signs of autism and was funded through a grant from the Centers for Disease Control and Prevention and its Learn the Signs. Act Early. campaign. Thanks to additional multi-year funding from the CDC, OAR will expand its outreach model to Houston this month, then on to the West Coast mid-year, finishing in Washington, DC in November and concurrently begin work on additional resource materials specifically designed for consumers in the Latino community.
In Houston, OAR will follow the just completed conference with training for 28 promotoras associated with Dia de la Mujer Latina (DLM) during April. Through a stroke of good fortune, Venus Gines, the founder of DLM and a partner in developing the first model in Atlanta now lives in Houston. Through Gines, OAR has both an experienced trainer and access to promotoras. The promotoras will then put their training to the test on May 2 in a community health fair, then at three more fairs in the coming months.
In June, OAR has agreed to work with ASA-Los Angeles to provide a training program there. Plans are developing with the National Foundation for Autism Research in San Diego for a similar collaboration before the end of the year. In Washington, DC, OAR will participate in Telemundo’s Feria de la Familia for the third year in a row.
“Our principal objective is to empower local organizations, “ says OAR Executive Director Mike Maloney. “OAR provides the materials, syllabus, and level of coordination required initially, then basically hands the program over.”
In addition to supporting an expanded outreach program, OAR is also developing informational materials that will better inform the community and will phase them into distribution as the materials become available.
For more information on OAR’s Latino Outreach program, please contact Mike Maloney.
OAR Research Competition Receives Record Response
The response to OAR’s 2009 Annual Research Competition has broken all previous records. OAR received a total of 75 pre-proposals, 13 more than last year, by the April 3 deadline. Consistent with the overall increase, applications from researchers in other countries rose. Three pre-proposals were from Israel, two from Canada, and one from Australia. With the close of the application period, the first evaluation stage of the competition begins.
“With 75 pre-proposals this is one of the most auspicious starts to our research competition to date,” says Dr. Peter Gerhardt, OAR president and chair of the Scientific Council. “More important, the quality of the pre-proposals suggests that this will be a very difficult year for our reviewers, which for our purposes is actually a very good thing.”
OAR will fund studies of one (up to $30,000) to two years (maximum of $60,000). This year, OAR plans to award up to eight new research grants for a total of $300,000. With those awards, OAR’s overall research funding will surpass $2 million in just seven short years.
The topics addressed by the researchers reflect a broad range of issues related to autism spectrum disorders (ASDs) across the lifespan, including: early identification, treatments and services, and teaching as well as issues concerning individuals with Asperger Syndrome, adolescents, and adults, such as continuing education and employment. The topics receiving the most attention based on the number of related pre-proposals fall in the areas of: improving social skills, emotion regulation, treating food selectivity, and vocational opportunities.
Members of OAR’s Scientific Council, along with a number of guest reviewers, are currently conducting the initial screening and review of the pre-proposals. Based on their scores and recommendations, OAR will identify the most promising studies and invite full proposals for those selected pre-proposals in June. The full proposals are due August 7. At that time, the last phase of the review will commence concluding with an in-person final review on October 22.
The final decision rests with OAR’s Board of Directors, who will receive the report and recommendations of the Scientific Council and approve the new grant awards on October 24. OAR will announce the 2009 grant recipients in November with funding to begin January 1, 2010.
News from OAR
OAR Content Featured in Washington Times Special Section
The Washington (DC) Times ran a special feature on autism for National Autism Awareness Month with all of the content coming from OAR (except for advertising). Take a look at the feature and note that OAR’s Web site address and name appears throughout:
http://www.print2webcorp.com/news/washingtontimes/Autism/20090402/p01.asp?t=s
Inaugural Philly Marathon Baseball Game is a Grand Slam
Villanova Field, the home of the Villanova Wildcats baseball team played host to the inaugural 100 Innings for Autism baseball game April 3 and 4. Weather and wet fields led to the cancellation of Saturday’s play, but Kris Sharp and Rich LaPat, players in the Greater Philadelphia Men's Adult Baseball League and the organizers of the event, were undeterred. With a green light on Sunday, the game began promptly at 7:30 a.m. Sunday morning.
Opening pitch honors went to two young men diagnosed on the autism spectrum, Jack Huffman and Dane Allen. Players and fans alike rose in applause as the boys took the mound and threw their pitches toward home plate. Then the game began. Any thought that this would be an exhibition game were immediately dispelled. There were stolen bases, bang-bang plays at home plate, line drives, diving catches, cut-off plays, and more.
“These players came to play,” commented OAR Executive Director Mike Maloney, who attended the game. “They clearly love the game and play it the way it was meant to be played. I was really impressed by the camaraderie among the players and their execution.”
At the end of the day, after 37 innings and with daylight fading, the umpire called it a game. Afterward, Sharp assembled the survivors around the pitcher’s mound and presented Maloney with a check for $10,000 made payable to the Organization for Autism Research.
OAR Welcomes New Board Member
OAR is delighted to announce the election of Lisa Hussman to its Board of Directors by a unanimous vote. Hussman, who lives in Ellicott City, MD, brings a wealth of professional and personal experience to the board and has been an active participant and supporter of several autism- and disability-related organizations in Maryland, including: Pathfinders for Autism, the ARC of Howard County, Angels’ Place, the local Howard County chapter and national Autism Society of America, and Towson University’s Center for Adults with Autism Spectrum Disorders.
“I was excited to learn about OAR last year because I believe that OAR’s focus on applied research serves an important need,” Hussman commented on her appointment. “I look forward to lending my support to help with OAR’s current programs and new initiatives, which include education, transition to adulthood, employment, and models for group homes.“
Hussman, who has a 15-year-old son with autism, a 12-year-old daughter, and a 24-year old nephew with autism, becomes the twelfth member of OAR’s Board.
“Lisa’s experience and interest match both our board leadership needs and our program priorities,” said OAR Chairman Jim Sack. “She is a terrific addition.”
OAR welcomes inquiries from persons interested in taking a more active role in OAR. For more information, please contact Mike Maloney, OAR’s executive director.
ISO of Your Stories, Hints, and Tips
Lisa Jo Rudy, the About.com guide to autism and the national autism parent examiner at Examiner.com, is working on a book called Autism Out of the Box.
She is looking for “stories, hints, and tips regarding successful inclusion of kids, teens, and young adults with autism in community activities and/or programs. Possibilities: scouts, sports, arts, music, clubs, camping, volunteering, interning, museums, camps, 4-H, etc.
She is hoping to hear from “parents, program leaders (eg, scout leaders, museum professionals, etc.), and/or adults/teens with autism. What experiences work well? Did experiences lead to friendships, internships, career directions? What are the best ways to select, prepare for, and succeed in the wider community?"
Her deadline is May 15, 2009 by 6:00 p.m. To find out more, contact her at Lisa@lisarudy.com.
Focus on OAR Research: Transition to Adulthood
OAR Researcher Plumbs the Data on Use of Services After Childhood
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Paul Shattuck, Ph.D. |
"If you were an alien with no knowledge of autism and recently landed on earth to study scientific articles about autism, then you might conclude that autism disappears in children after they turn 8 years old or so,” says Paul Shattuck Ph.D., assistant professor in the George Warren Brown School of Social Work at Washington University in St. Louis, MO. That certainly is not the case, Shattuck goes on to say.
That’s why he decided to use longitudinal data on 922 youth with autism from the National Longitudinal Transition Study 2 for his OAR-funded research project to answer questions including: How do patterns of service utilization change as youth with autism age into young adulthood? Are there disparities? Are there discontinuities? Are some patterns of service use associated with better functional outcomes in young adulthood?
Dr. Shattuck notes that the transition from adolescence to adulthood is a challenging developmental turning point for all youth, but particularly so for those with autism.
He notes, however, that “just when they need help the most, youth with autism face three major service-related risks: loss of entitlement for services as they age out of eligibility for special education; potential loss of health insurance coverage as they age out of eligibility for their parents’ private insurance or the State Children’s Health Insurance Program; and the shift to adult services systems (which have a different architecture, lack federal entitlements, and have fewer insurance options).”
Findings from this study will be nationally representative and highly generalizable, Dr. Shattuck says, leading to outcomes such as helping to target policy reforms and the design of new transition services and informing decisions about resource allocation for new programs.
About the Study
The study will look at data from the National Longitudinal Transition Study 2, a study funded by the U.S. Department of Education and conducted by SRI International. The nationally representative sample generalizes to all special education students in the autism exceptionality category who were in 7th through 12th grade and ages 13 through 16 on December 1, 2000. Data were collected every two years via multiple methods including parent/guardian interviews, youth interviews, teacher surveys, school program (IEP) surveys, school and community characteristics surveys, direct student assessments, and alternate student assessments.
About This Researcher Paul Shattuck, Ph.D., understands disability in ways that most researchers do not. His father was stricken with polio when he was in his 20s before Dr. Shattuck was born, requiring a leg brace and crutches. Dr. Shattuck grew up attuned to the special needs his father’s disability required and also to the fact that those needs were often not met. “No one specifically taught me to see the physical barriers everywhere. I was just naturally tuned in from growing up with my dad. I was constantly on the lookout for curbs and stairs,” he explains, noting that it was well before passage of the Americans with Disabilities Act. His affinity for and interest in people with disabilities continued throughout his education. As a doctoral student in Wisconsin, Dr. Shattuck worked as a research assistant for Marsha Seltzer, Ph.D., on a large study of adolescents and adults with autism. “She was a great mentor,” he says, and that study got him hooked on looking at autism and its effects both on the people with autism and their parents and caretakers. When his son, now 14, faced special health care challenges, Dr. Shattuck got to know a lot of families that had children with autism, which gave him an intimate view of the challenges those families face. “It’s very compelling to see what happens in the families of very close friends as their kids age out of high school. Children with developmental disabilities have access to special educational services, but it’s kind of like driving off a cliff after they graduate from high school. “We know how difficult the transition to adulthood is for most adolescents but that transition is often even more tumultuous for kids with disabilities. Just when they most need support, the rug is pulled out from under them.” Today, he uses his Ph.D. in social welfare, a field of study that combines social sciences and public health, to look at and answer questions related to disability and community. As an assistant professor in the George Warren Brown School of Social Work at Washington University in St. Louis, MO, he is bucking the trend to narrow his research focus. “I like building bridges across disciplines,” he says. It not only suits his personality, it has given him the opportunity to look at how policy affects development in people with disabilities and how people with disabilities and their families and caretakers can more effectively advocate for changes in policy. In addition to his academic work, Dr. Shattuck consults with nonprofit disability advocacy groups on fundraising and with strategic planning. He served last year to help develop the research priorities for the Interagency Autism Coordinating Committee’s Strategic Plan. He is currently serving as an advisor to the Missouri Autism Guidelines Initiative. While autism is his major focus, he also looks more generally at the social, financial, and health care needs of children with disabilities. “No child is an island. If we really want to understand how to help people with autism and other disabilities have better lives then we need to understand both basic science about human development AND the family, social, political, and service contexts they live in. I share OAR’s commitment to conduct scientific research that we can translate clearly into real-world benefits. That is why I was so thrilled and honored to receive their support for this work. I am very grateful to OAR and all who support its mission.” |
“What is unique about this study is its size,” observes Dr. Shattuck. “A lot of autism research is based on very small samples and small-scale studies. There is often a lack of ethnic and socio-economic diversity as well. And finally, the majority of current research in autism focuses on biological factors and very young children.”
“This study gives us chance to look at many questions no one has ever looked at with a nationally representative sample. What kinds of services are youth with autism getting in high school? We don’t know. What’s the graduation rate of youth with autism from high school? We don’t know. What happens after high school? How many go on to further education or jobs? We don’t know. How many live with parents or go to something more independent? We don’t know.” Dr. Shattuck hopes that this study can begin to answer those questions.
He writes in his proposal: “Because the sample is very large, nationally representative, and diverse both socioeconomically and racially, it will increase the generalizability and practical impact of findings and enable examination of questions related to disparities in use and outcomes. Second, the study is longitudinal and explicitly designed to span the transition years from youth to young adulthood. This enables examination of actual change as compared to attempting to make inferences about life course changes based on comparing age groups using cross-sectional data. The ability to examine the temporal order of independent and dependent variables increases confidence in findings suggesting causal relations, though it is not solely sufficient to establish causality. Third, the criterion validity of the autism exceptionality category is very high. Last, the collection of data from multiple sources results in a remarkable depth and breadth of data that will enable examining many different research questions.”
Results of the Study
The study will provide knowledge that is immediately and directly relevant, Shattuck says. He describes the outcomes in his proposal:
“Identifying underserved populations, barriers to service access, and factors that enable improved access will help target policy reforms and the design of new transition services. Understanding which services are strongly associated with positive outcomes will inform decisions about resource allocation.
“In addition to testing specific hypotheses, this study will also generate hypotheses to guide future research. Identifying potential mediating pathways linking service utilization and functional outcomes can guide the development and evaluation of interventions that target these mediating mechanisms. Identifying potential moderators of service access and better outcomes will provide the needed base of evidence for developing and testing strategies for tailoring interventions to increase equity and effectiveness.
“The study results can serve as nationally representative baseline indicators for comparison to regional and local samples. Study findings can also be used to supplement data from other studies with national samples that are not based on a probability sampling design such as the Interactive Autism Network. Future intervention research findings can be compared as better, or worse, than national averages. Changes over time in national benchmark indicators can assess whether patterns of service utilization and young adult outcomes are improving or worsening. This study will also inform the refinement of theoretical models of service utilization and the connection with subsequent outcomes.”
Last but not least, Dr. Shattuck says, findings from this study will serve as the basis for a proposal to the National Institute of Mental Health. “My broader aim is to use the hypothesis generating findings about mediating and moderating mechanisms from this study to design and test service system-level interventions. Depending on the nature of this study’s findings, primary intervention targets may include reducing disparities in service access, improving the fit between services needed and services received, or improving the effectiveness of services at influencing functional outcomes.”
RUN FOR AUTISM News
RUN with OAR in Chicago, New York, or DC
Don’t Delay: Sign Up Now
New York, Chicago, and Washington, DC, in that order represent the “big three” among races where OAR is a charity partner and fields a large team of runners each year. With registration for the Chicago and Marine Corps Marathons already closed, the only way to enter either of these races is through a participating charity. OAR has a number of entries still available for these two races and the New York City Half Marathon on August 16.
For the most complete RUN FOR AUTISM experience, consider joining OAR’s team for the Chicago or Marine Corps Marathon/10k in October. Each race features a special Runners’ Recognition Dinner the night before the race, a world-class running event, pre-race support in the Charity Village, and a celebration with friends and family in OAR’s tent to celebrate your finish. Join the team today!
New York’s half marathon offers one of the most unique courses in the world. Join us to RUN the streets of New York City in the third annual NYC Half Marathon, August 16. The course loops around Central Park, continues down 7th Ave through Times Square, and finishes in Battery Park within view of Ellis Island and the Statue of Liberty.
OAR has a limited number of entries to these three events, so join the team today to guarantee a race entry! For more information go to: www.runforautism.org or e-mail run@researchautism.org.
A Chilly Reception: Shamrock Shufflers Run Through Snow
Celebrating its 30th anniversary, Chicago’s Bank of America Shamrock Shuffle continued its tradition of welcoming spring on March 29. The Chicago weather responded by offering runners temperatures in the 30s and steady snowfall through the morning. This came as a shock after temperatures in the 70s earlier in the week.
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Shamrock "Shufflers" didn't get the spring temperatures they were expecting but they braved the snow to run. |
Although 32,500 runners registered for the race, only 13,714 runners braved the winter elements to cross the finish line. The weather did not slow U.S. Olympian Deena Kastor or Kenyan runner Emmanuel Korir who both came up winners, disregarding the competition and conditions to claim their victories over the 8K course.
First-time OAR runners Karen Luka and Sarah Kelly led the OAR team, having chosen the Shamrock Shuffle as their primary fundraising event for 2009. A number of other alumni and current team members took part as well. They will be participating and fundraising for OAR’s partner events in Chicago later this year.
The Shuffle offers runners a partial snapshot of the prestigious October marathon. It has the same start, finish line, and opening miles. But Shamrock runners experience something upon finishing the race that the later marathoners don’t: namely a rollicking Irish festival, complete with colorful characters dressed in costume and green beer (for those 21 and over).
The after-party is not all that this race weekend offers. Before the race, participants can experience the race expo on Friday and Saturday. This takes place on the Historic Navy Pier, with its famous Ferris wheel, shops, and games. OAR has participated in the expo every year since expanding the RUN FOR AUTISM to Chicago in 2006, and uses the opportunity to increase awareness of autism and OAR and recruit runners for he summer half marathon and October Marathon. With the contacts made at this year’s expo, the RUN FOR AUTISM is well on its way to breaking records in Chicago once again.
Chicago has become OAR’s “first city” with three major events on the schedule and something to offer everyone. If you missed the Shamrock Shuffle or if you want to add to your Chicago RUNs, sign up for the inaugural Rock ‘n’ Roll Chicago Half Marathon on August 2, which has replaced the Chicago Distance Classic, and/or the Bank of America Chicago Marathon on October 11. Both races will have limited entries once they close to the general public, so sign up through OAR today. For more information, go to our Web site at www.runforautism.org or send an email to run@researchautism.org.
Follow the Yellow School Bus, Say OAR Triathletes Laura and Tyler Potter
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Laura and Tyler manage to balance family life with their three sons, work, and training and participating in triathlons to benefit OAR. |
“Imagine you are six years old and people don’t make sense to you,” is how Tyler Potter begins explaining why he thinks everyone connected with autism should find a way to run or walk or bike or swim or do all of those to provide funds for OAR.
“Many things people say and do are a mystery to you and you don’t understand their reactions to you,” Tyler continues his description of how his son sees the world. “Sometimes just the touch of unusual textures is physically painful to you. You can’t always make your needs known clearly. Now imagine your Mom and Dad, the only two people in the world that you trust, put you on a big yellow vehicle that smells funny, and is full of noisy kids you don’t know. Imagine that vehicle takes you to a big building filled with strangers who are telling you what to do, but you don’t always understand what they’re asking or why.
“Scared? That’s why we support OAR because there are little people courageous enough to do that every day and they deserve our help and understanding.”
Tyler and his wife, Laura, live this that scenario, because their 7-year-old son has autism. “He has been a great source of inspiration on many planes for us all,” explains Laura. “When we get tired, we think of him and have all the motivation we need!”
They are also proud parents to two more boys—a 9-year-old and a 5-year-old. Laura works as an emergency medicine physician while Tyler is a full-time dad, a job he enjoys, especially since it gives him time to be an “outdoorsman extraordinaire.”
With three children and demanding work, it’s hard to believe that the Potters find time to train for and participate in triathlons, but that is exactly what they do while also raising money for OAR.
“Laura and Tyler are two of our OAR stars,” says Doug Marocco. “They participated in several Virginia Triathlon Series events last year and raised more than $1,600 for OAR and autism research. They have committed to running the Marine Corps Marathon along with a few more triathlons for OAR this year.” Between them, they have completed 11 triathlons, nine for OAR, last year, and look forward to running their first marathon in October.
The couple heard about OAR through the Virginia Triathlon Series (VTS) and have been OAR supporters ever since. “OAR is pursuing a broad front in its research, not only searching for a cause and better method of diagnosis but working in the areas of intervention and treatment.”
Tyler admits that there are only two things that get him running: if something scary is chasing him or if he is trying to get into shape for something. That’s why he’s doubly glad for OAR events: they get him into his sneakers and into training. Laura, on the other hand, is someone who has always enjoyed running so OAR events give her a chance to do something she likes: run with her husband and support a cause that has special meaning to them both.
For both, Laura explains, triathlons offer “an endurance challenge that helps make us more well-rounded athletes.”
In the end, say the Potters, participating in OAR’s athletic events boils down to one simple word: Commitment. “Unless you commit and start to train to reach your goal, you’ll never get there.” And if you’re afraid, just keep the picture of that yellow school bus in mind and imagine the children who conquer fear every day to get on it. “They are the ones who need the help that OAR is trying to provide. And we can all be a part of that.”
Salute:
Paying Lavish Attention to Those Who Need It Most:
Diane Murrell Organizes First Spanish-Language Conference for Parents of Children with Autism in Texas
For participants in AUTISMO: Preguntas, Respuestas y Recursos (Autism: Questions, Answers and Resources) in Houston March 26, the first-ever Spanish language conference on autism held in the state of Texas, it must have felt something like a birthday combined with the best class they ever had in school. Participants who said they have often felt like second-class citizens reported that it was “emotionally healing” to have speakers, exhibitors, and organizers “lavish attention on their needs.” Teachers who attended said they never received so much useful quality information in all their years of training. Between 140 and 150 Latino family members and 40 and 50 professionals attended the conference.
The brainstorm of Diane Murrell, a clinical social worker at the Blue Bird Circle Clinic for Pediatric Neurology at Texas Children's Hospital, the conference was held in the Texas Medical Center at First Presbyterian Church of Houston, a non-threatening location for Spanish-speaking families to come to.
In addition to parents and other family members, the organizers also invited Spanish-speaking healthcare workers and teachers working with families with autism. Murrell purposely picked a weekday so children would be in school and ended the conference in time for parents to pick up their children.
The Medical Information Center, a program of the Mexican Consulate (which collaborates with Texas Children’s Hospital and other organizations) underwrote the conference, which was sponsored by Texas Children’s Hospital and its International Office. Murrell is deeply grateful, she says, “for the support from the International Office at Texas Children’s Hospital that was provided by Assistant Director Michael Walsh and his team (especially Claudia Flores). Their desire to benefit and empower the Latino community played a significant role in making this conference such a success.”
Two keynote speakers, Emily Iland, who wrote the only comprehensive book on autism spectrum disorders (ASD) available in Spanish, Los trastornos del espectro de autismo de la A a la Z: Toda la Información Que Quiere Saber, and Maria Quintero, Ph.D., assistant deputy director of the Mental Health and Mental Retardation Authority of Harris (Houston, TX) County (MHMRA), gave presentations.
Attendees also took advantage of information and resources provided by exhibitors, which were chosen because they are key community resources. “Many of these families may not speak English and often do not have access to computers,” Murrell explains. “Additionally, they face the social isolation that occurs from having a child with autism who does not fit readily into community life. The child’s delays or behaviors can often limit the mother’s connection within her community. Realizing this difficulty we brought Spanish-speaking workers to the parents rather than asking the parents to locate and access agencies.”
Those agencies included Early Childhood Intervention Services (ECI), a state agency for families with children, birth to three, with disabilities and developmental delays; the Mental Health and Mental Retardation Authority of Harris (Houston, TX) County (MHMRA); the Harris County Hospital District, a nonprofit coalition of hospitals and clinics that offer medical care to those without insurance, including undocumented immigrants; and The Arc of Greater Houston, which offers families with children with disabilities education and support for advocacy; the Houston Independent School System; and First Presbyterian Church, which offers a Sunday school class for children with autism.
OAR also lent support. “At OAR, we were delighted to hear about what Diane was doing. She has been helpful in trying to introduce OAR and me to people and organizations in the Latino community in Houston,” says Mike Maloney, OAR’s executive director. “We sent some of OAR’s Spanish resources, including copies of our Life Journey through Autism guidebooks, in support of the conference.”
Connecting the Dots
For Murrell, the conference was an attempt to connect dots for Latino families that badly needed to be connected. “As a clinical social worker, I work with a number of families with autism,” she says. “I had very few resources I could offer Spanish-speaking families. I don’t speak Spanish so we needed to have a translator by phone or in person if the parents didn’t speak English. The Iland book was very expensive so I couldn’t offer that as a resource, and the only support groups I knew of were in English.”
The families had very little, if any means, to find the resources they needed themselves, since many didn’t speak English and often didn’t have many connections within their own communities because of the isolation of having a child with a disability. “They face huge disadvantages that other families don’t,” explains Murrell. The conference was her attempt to ensure that these families could take at least a first step in getting their children the help and support they need.
She wrote a proposal that colleagues at the Blue Bird Circle Clinic recommended she take to the Texas Children’s Hospital International Office, because they had a grant for health outreach through the Medical Information Center. Murrell recruited the speakers and exhibitors/agencies through her personal contacts in the medical community. “They were all very excited to jump on board. They immediately grasped the vision and they understood the challenges these families face. Each of them works with immigrant families, though not all of them deal with families whose children have autism. It was very, very much an endeavor of altruism on the part of the organizations that participated.”
As a result of the conference, several Spanish-language support groups for autism are in the works. Murrell is also setting up a speakers bureau to provide Spanish speakers for these groups. She is also excited that several participants have now asked for Iland to speak in other Texas cities and that the Mexican Consul General said that similar conferences should be held in all Texas cities. In addition to media coverage of the conference, Univision, a Spanish-language television station in Houston, has decided to do a documentary on autism after covering the conference. And, even better, says Murrell, the number of requests for support groups from agencies and folks who weren’t at the conference keep coming in.
A Personal Reward
The conference was a gift to Murrell as much as it was to participants. Throughout her work as a social worker, she has struggled to find resources for immigrant families who faced language and other barriers to getting needed treatment and services for their children. “To be at the conference and watch these families getting support and validation, to know that the conference has resulted in similar conferences being organized around the state and that several Spanish-language support groups are being started is great reward for me,” she says.
As the mother of four sons, one of whom has high-functioning autism, Murrell chose social work as a career that would help children who faced challenges and provide support to mothers who are often lonely and exhausted trying to raise their children. “A mother’s emotional health is key to a child doing well, and I wanted to provide an opportunity for parents to connect with other parents during the conference, which is what happened,” she notes.
Though she doesn’t face the same language barriers as many Latino families, her experience as a British immigrant to the United States gives her some understanding of the obstacles and difficulties those families face. “I speak English, I have access to computers, I have a college education. Without those things, it would have been impossible for me to navigate the systems that these families also must navigate. I wanted to be able to help them do that.”
Murrell has written and illustrated three books for elementary school-aged children, which helps both typical children and those on the spectrum understand autism. The books, Tobin Learns To Make Friends, Friends Learn About Tobin, and Oliver Onion, are published by Future Horizon’s Autism Publishing Co. and have won several awards.
