Taking On the Future: Making Adult Lives Better for People with AutisM

by Denise D. Resnik

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Denise Resnik

Denise Resnik is the co-founder and development chair for the Southwest Autism Research & Resource Center. She is also a long-time OAR supporter and collaborator.

Dear Friends,

Our son, Matthew, will turn 18 this year, which should mark his entry into adulthood. While we have experienced his considerable progress and increased confidence, competence, and independence, he still sneaks into his parents’ bed four or five nights a week and prefers to entertain himself with less-than-age-appropriate movies and computer programs.

Beyond the celebrations, Matt’s birthdays also can be painful reminders of the stark contrasts between his development and that of typical kids his age. And it never ceases to amaze me how our thoughts, feelings, and words are expressed by other parents in similar situations around the world. We all share many questions unspoken:

• Who will care for him when we’re no longer able to do so?
• Will he have friends?
• Will she become involved in a romantic relationship or marry if she chooses?
• Will she be embraced and valued by the community?
• Who will keep her safe and engaged in productive activities that allow her to bolster her self-confidence and contribute her many talents?
• Will he be employed and able to earn a living, care for himself with the greatest degree of independence possible and with dignity?

Matt has four years left in the school system. That’s four years to achieve our goal of empowering him to become part of the workforce and to someday live on his own. In the early years, we thought we’d have so much time to get him on track.There would be time to provide him with thousands of hours of therapeutic interventions.Time for science to advance and identify thecauses and cures.Time for a miracle.

While we may not have reached all our goals, our family (and many more like ours) is fortunate that organizations like OAR and the Arizona-based Southwest Autism Research & Resource Center (SARRC, www.autismcenter.org) are collaborating — talking about the issues facing adults with autism and their families, forming strategic partnerships to address these issues and most importantly, effecting positive change that will improve the quality of life for adults with autism.

SARRC, OAR, and their other collaborating partners through Advancing Futures for Adults with Autism (AFAA), led by Autism Speaks, the New York Center for Autism and Global Communities of Support, are also creating peace of mind for parents. Through these alliances, we continue to make progress toward building meaningful futures for our children, futures that include friends, jobs, homes, and communities thataccept, support, andvalue our adults.

One example of our progress is the recent opening of SARRC’s Opus West Vocational & Life Skills Academy (VLSA), which fills a critical need in our local community, providing teens and adults with autism with job and life-skills training, career coaching, and social skills development. These services will help them live more independently and empower them to become contributing members of our community. We hope the programs being developed by SARRC’s VLSA’s can serve as models for replication in other communities across the country to address some of the needs of adults with autism.

OAR and SARRC continue to seek answers to other lingering questions. The issues before us are enormous, and none of us can tackle them alone. They include appropriate boundaries in relationships, sexuality, safety and security, access to healthcare, understanding the law, and connections with faith-based organizations.

As we discuss these issues, as well as the large looming matters of residential and vocational services, it’s easy to talk about placement. But it’s about more than that. We want them to have homes and careers. We want them to have the same opportunities for enrichment and fulfillment as we all do. As an autism advocate and parent, I’m committed to this vision.

OAR truly understands what’s in the hearts and minds of parents like me. At the recent Autism Think Tank sponsored by AFAA, the eloquent Dr. Peter Gerhardt told a poignant story I have since shared many times over with friends and family. Peter talked about a family whose son was fixated on Starbuck’s, not for the mocha latte, but for the green straws. This young man could be enticed to do just about anything if the reward meant going to Starbuck’s so he could collect more straws.

And collect them he did!

He had his green straws with him when he ate and when he went to school, and they were placed on his nightstand when he went to sleep. When Peter consulted with the family, he and the child’s father even discussed the opportunity of purchasing a Starbuck’s franchise.

So it’s understandable why the parents were upset when they called Peter to inform him that a dozen or so school staff and educators would soon be convening to review this young man’s annual individual education plan (IEP), and one of the items was to extinguish his obsession with green straws.

“What should I do?” the father asked Peter. “I’m really worried.”

Peter’s response? 

“Go into that meeting, head held high, and let them know they should each be so lucky as to have a green straw in their lives.”

While we work so hard to help individuals with autism become indistinguishable from their peers, it’s clear they’re not the same. They do have differences, but they are differences we can respect. I know Matthew’s limitation, but I also know the many valuable ways he can contribute. It’s appropriate for us to not require individuals with autism to give up those things that can easily be socially acceptable and, most importantly, things that bring them joy.

As for the things that aren’t socially acceptable? We need supports in place that build their skills, raise their self-esteem, and help create a more understanding and compassionate community — one that also respects the courage it takes to live each day with an autism spectrum disorder.

Peter, Mike Maloney, and their colleagues understand the challenges our adults with autism face and the challenges of transition. The right resources can educate teenagers and young adults with autism and their parents to help prepare them for the years ahead.

At SARRC, we’re honored to partner with OAR on Advancing Futures for Adults with Autism as well as other national initiatives. We are also proud of our partnership on the Life Journey Through Autism series, which have included A Guide for Transition to Adulthood and A Parent’s Guide to Assessment. Both are available at www.researchautism.org/resources. And we are working together to launch a series of workshops this year on the pressing issue of “What Next for Our Young Adults with Autism?”

OAR’s approach to this challenge is direct, honest, and collaborative. Because of this dynamic organization, we will be better prepared when the school bus no longer stops for our kids and as society expects more and more from them.

On June 3, our family will celebrate Matt’s 18th birthday and the progress he’s worked so hard to make through the years. Despite the challenges, we know there are tremendous possibilities for his future and remain eternally hopeful for Matt and all of our children and adults with autism.

We wish for them a bright future, one where they--and their “green straws”--are welcome.

With hope for the future!

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OAR Supports Advancing Futures for Adults with Autism

The group of people with autism spectrum disorder (ASD) diagnosed as part of the first wave of what is typically referred to as the autism epidemic is now rapidly approaching adulthood. This group, however, represents only the proverbial tip of the iceberg. With some reports noting that 70 percent of the identified individuals with ASD are less than 14 years old, a crisis of unprecedented magnitude looms for adults with autism, their families, and the ill-prepared and under-funded adult service system charged with meeting their needs.

In order to address this unparalleled crisis, on January 23 and 24, OAR joined just under 60 other groups and individuals from across the country in the Advancing Futures for Adults with Autism (AFAA) Think-Tank sponsored by the New York Center for Autism (NYCA) and Autism Speaks. The mission of AFAA is simple, “To create meaningful futures for adults with autism that include homes, jobs, recreation, friends, and supportive communities.” This two-day intensive meeting was designed to bring together some of the best minds, both inside and outside of the autism community, to put this mission to work toward identifying the challenges facing adults as they leave the educational system and ultimately, promoting programs and policies that support each individual in a life of dignity, competence, and quality.

Current State of Services

Before the meeting, the New York Center for Autism tasked OAR President Peter Gerhardt, Ed.D., with developing an analysis of the current state of services of adults with autism that was distributed to all participants prior to the meeting. “This was the source document from which we all worked,” says Dr. Gerhardt. “This was essential given the fact that a number of participants, including those from the business community, federal government, and the community at large, may not have been familiar with many of the services or overall issues.”   The document included these findings:

• Outcome studies of adults with ASD document that, independent of current ability levels, the vast majority of adults with ASD are either unemployed or underemployed.
• The majority of adults with autism continue to live with parents, siblings, or older relatives.
• The current economic slowdown can be expected to have a direct and negative impact on the availability of adult services.
• It appears that for many individuals with ASD, the transition requirements of IDEA are poorly implemented with little attention to service coordination or direct family involvement.
• The Federal Department of Health and Human Services reports that the combined, annual average staff turnover rate for programs serving adults with developmental disabilities is 50 percent coupled with a staff vacancy rate of 10 to 12 percent.
• While appropriate and effective residential and employment models exist, access to these models is greatly restricted due, primarily, to a lack of adequate funding.
• The greatest impediments to the development of integrated lives of quality and dignity for adults with autism are system inadequacies coupled with a public perception of adults on the spectrum being unemployable.

Think-Tank Recap

The Think-Tank kicked off on Friday morning with opening remarks from Ilene Lainer, executive director of NYCA, and Peter Bell, executive vice president of Autism Speaks, followed by a brief overview of the “State of the Services” by Dr. Gerhardt. Think-Tank participants were then divided up in focus groups to identify specific challenges faced by adults on the spectrum and their families in the areas of employment, housing, and community living. “The diversity of experience in each focus group resulted in these sessions being directed, effective, and stimulating,” reports Dr. Gerhardt.

While Friday focused on the necessary identification of the myriad challenges, the focus of Saturday was on the development of possible strategies and solutions relevant to each of the three focus areas. On Saturday afternoon, the entire Think-Tank reconvened to gather input on the work of the focus groups. By the end of the day, “a true sense of mission and purpose had emerged. We all recognized the issues we were discussing were huge but, at the same time, that there is no more time to waste. These problems won’t get any more manageable on their own so let’s plot a course and begin to take action,” explains Dr. Gerhardt.

Next Steps

The organizers of the Think-Tank are currently preparing results for distribution, but the Think-Tank was just the first step toward meeting AFAA’s mission. The next step is a national town hall meeting that will bring together representatives from numerous geographic regions across the country through tele- and web-conferencing. Working from the Think-Tank recommendations, the representatives will identify a national list of priorities, challenges, innovations, and best practices designed to address the needs of all relevant constituent groups. The results of the national town hall will be used as the basis for a comprehensive legislative agenda focusing on proactive public policies and professional best practices to effectively address the long-term needs of adults with autism. That agenda will be presented at an autism congress tentatively scheduled for the fall of 2010.

“This is a critically important project and one that OAR is proud to be part of,” states Dr. Gerhardt. “Adults with autism deserve the same opportunities and options that those of us not on the spectrum take for granted more often than not. Those opportunities include the chance to hold real jobs; homes in the community; people in their lives for whom they care and who, in turn, care for them; being free from abuse and neglect; having access to healthcare, leisure, and, if desired, a community of faith; and being treated with dignity and respect. AFAA is a vehicle by which this may be achieved.”    

In addition to NYCA and Autism Speaks, AFAA steering committee member agencies include; OAR, the University of Miami—Nova Southeastern University Center for Autism and Related Disorders, Global Communities of Support, Daniel J. Fiddle Foundation, Easter Seals, Hallmark Community Solutions, Southwest Autism Research and Resource Center, The Autism Program of Illinois, and the Alpine Learning Group.

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For Military Families: Resources Offer Information, Support, and Direction

By Joe McBreen, CAPT MC USN

This article offers a number of resources for military families who have children with autism or who may be concerned about autism. The views expressed in this article are those of the author and do not necessarily reflect the official policy or position of the Department of the Navy, Department of Defense, or the U.S. government.

New Pilot Sites

The Naval Medical Center Portsmouth and Naval Medical Center San Diego are pilot sites for a new Web-based information center for military families that have a member with autism. The website is TheParentReview.com and will have resource links and allow parents to ask questions of experts.

Finding Out More About Developmental Delays, Autism, and ASDs

If you suspect your child has a delay in development, autism, or an autism spectrum disorder (ASD), the first step is to gather information and become more educated about what to expect. Good internet resources for information on child development include:

1. The National Dissemination Center for Children with Disabilities at http://nichcy.org/Pages/Home.aspx
1. General information about child development: Click the “Families and Communities” tab, then click “Developmental Milestones”
2. Information about a specific disability (including autism): Click the “Families and Communities” tab, then click “Specific Disabilities” under the “Differences and Disabilities” heading
2. The Department of Health and Human Resources (DHHR), Centers for Disease Control and Preventions (CDC), National Center on Birth Defects and Developmental Disabilities (NCBDDD) at http://www.cdc.gov/ncbddd/
1. General information about child development: Select “Child Development”
2. Specific information about autism: Click on “Autism Spectrum Disorders” or “Autism Information Center”
3. Signs and symptoms of autism: Click on “Early Warning Signs of Autism”
3. For information specifically on autism or ASDs, go to:
1. The Organization for Autism Research (OAR) at http://www.researchautism.org/ and click on the “Family and Friends” tab

1. The Autism Society of America (ASA) at http://www.autism-society.org/site/PageServer?pagename-about_home

Getting a Diagnosis

If after reading about autism, you continue to have concerns that your child may have autism or any developmental delay, make an appointment to see your child’s Primary Care Provider (PCP), who may also be known as the Primary Care Manager (PCM). Help your child’s care provider by taking a copy of the “Early Warning Signs of Autism” (see 2c above) and talking about it at the appointment.

After making an appointment, also call the local Early Intervention Services (EIS) agency. To find out how to contact the EIS Agency in your area, go to:

1. The National Dissemination Center for Children with Disabilities (NICHCY) at http://nichcy.org/Pages/Home.aspx
1. Click on “State Specific Info” and select the state where you are living
2. If your child is not yet 3 years old, contact the people listed under “Programs for Infants and Toddlers with Disabilities: Ages Birth through 2”
3. If your child is 3 years old or older but not yet in school, contact the people listed under “Programs for Children with Disabilities: Ages 3 through 5”
4. If your child is in school, contact the people listed under “State Department of Education: Special Education”

NOTE:  Military families that live on base where there is a Department of Defense (DoD) school will receive services from the Educational and Developmental Intervention Services (EDIS) team from the local military treatment facility (MTF). Call the EDIS Office or the MTF Information Office or Customer Service Center for assistance. Military families that live off-base and military families living in an area where there are no DoD schools must call the local Early Intervention Services agency.

Read about the EDIS program at:

1. Military HOMEFRONT web site at http://www.militaryhomefront.dod.mil/portal/page/mhf/MHF/MHF_HOMEPAGE
1. Type “EDIS” in the search block
2. Military One Source at https://www.militaryonesource.com/skins/mos/home.aspx
1. Type “EDIS” in the search block

The Individual with Disabilities Education Act (IDEA) is a federal law about developmental services available for children 0-3 years old (this section of the law is also known as Part C – Infants and Toddlers with Disabilities), and educational services for children 3-21 years old (this section of the law is known as Part B – Assistance for Education of All Children with Disabilities). This is not a TRICARE or Department of Defense program, but is available to all citizens of the United States.

Part C of the IDEA Law requires the local authority to provide a free evaluation when a parent calls and states he or she has a concern for his or her child’s development. The evaluation must be multidisciplinary, that is, the evaluation must be conducted by professionals from at least two different disciplines. Disciplines commonly used may include physical therapy, occupational therapy, speech therapy, special education, social work, nursing, psychology, and pediatrics. The evaluation must be free to the family and must provide a report of the child’s strengths and weaknesses.

The evaluation does not provide a diagnosis, but establishes what services (i.e., physical therapy, occupational therapy, speech therapy, etc.) may be of benefit for the child. The evaluation also must provide recommendations for services. In a few states, services are free; in most states, there is partial or full cost for services. If services are recommended, the Early Intervention Services agency and the family develop an Individualized Family Services Plan (IFSP).

The IFSP describes the child’s strengths and weaknesses as well as family concerns. It lists services to be provided to include who will provide the services, where, how often, and how long. Services are preferably to be provided in a natural environment, a place and setting that is routine for the child such as the home, day care, or play group. A variety of activities are designed to assist and encourage the child’s development, which also help parents and caretakers with activities they can use until the next visit.

Pact C – Infants and Toddlers with Disabilities of the IDEA Law describes the IFSP process for children 0-3 years old. Read about it at:

1. NICHCY at http://www.nichcy.org/Pages/Home.aspx
1. Click on “Help Babies (0 to 3),” then click on “Overview of Early Intervention”
2. NECTAC at http://nectac.org/
1. In the drop-down list under Topic Pages, select “Family-Centered Services,” then click “IFSP Process: Planning and Implementing Family-Centered Services in Natural Environments,” then click “The IFSP Process”

Part B – Assistance for Education of All Children with Disabilities of the IDEA Law describes the Individualized Education Plan (IEP) for children 3-21 years old. You can read about it at:

1. NICHCY at http://www.nichcy.org/Pages/Home.aspx
1. Click on “Educate Children (3 to 22),” then click on “10 Steps of Special Education.” Also read “All About the IEP”
2. If your child is 3-5 years old, read “Services for Children 3-5”
2. NECTAC at http://nectac.org/
1. In the drop-down list under “Topic Pages” select “Family-Centered Services”
2. Then under “Families’ Role in IEP Development,” select “Topic Briefs on IEP

The diagnosis of autism is often made by a comprehensive evaluation team, such as at a referral center, or by a specialist who routinely sees children with autism, such as a developmental pediatrician or a child psychologist. Special studies may be ordered based on what the specialist(s) finds when a thorough history and physical exam are completed. Autism is a complex neurodevelopmental disorder, and it can be a complex process to obtain appropriate services.

After the Diagnosis

If your child is diagnosed with autism read more about autism and services for autism at:

1. DHHR CDC NCBDDD at http://www.cdc.gov/ncbddd/autism/index.htm
2. NECTAC at http://www.nectac.org/topics/autism/autism.asp
3. OAR at http://www.researchautism.org/family/index.asp

Also, ask your child’s PCP for a consult to Case Management or ask your MTF Information Center / Customer Service Center how to contact the Case Management office. Case managers may work for the MTF and be directly available or work for the Managed Care Support Contractor and be available by phone. A case manager can be very helpful in guiding and/or assisting you in obtaining services for your child. The case manager should have a list of local support services for all families and for families with autism. Support can also be obtained from

1. Your local autism society. Find the chapter closest to you be going to http://www.autism-society.org/site/PageServer
   1. Click on “”Autism Community” on the left-hand side, then click on “ASA Local Chapters”
2. NECTAC, at http://nectac.org/default.asp
   1. In the drop-down list under Topic Pages, select “Family-Centered Services,” then, under “Family Supports,” click on one of these:
      i. PACER Center
      ii. Alliance Project
      iii. Parents Centers

Exceptional Family Member Program

It is important to enroll your child in the Exceptional Family Member Program (EFMP). Contact the EFMP Office at your base, your child’s PCP, or your case manager for information. Read about EFMP at one of these Web sites:

• Military HOMEFRONT at http://www.militaryhomefront.dod.mil/portal/page/mhf/MHF/MHF_HOMEPAGE, and type EFMP in the “Search” block
• Military One Source at https://www.militaryonesource.com/skins/mos/home.aspx and type EFMP in the “Search” block

The EFMP is designed to support active-duty service members who have a family member with a medical condition that requires special medical, dental, mental health, developmental, or educational services. Enrollment in the program is mandatory for active-duty personnel in all services. The program aids assignment of the active-duty member to locations where services needed by the family member are available and has links to support services for the family.

TRICARE Autism Demonstration Project

The TRICARE Autism Demonstration Project helps provide services for children diagnosed with autism, above what is already covered by TRICARE. Eligibility for the TRICARE Autism Demonstration Project requires enrollment in EFMP. Read about the TRICARE Autism Demonstration Project at one of these Web sites:

• The TRICARE Web site at http://tricare.mil/mybenefit/, then type “autism services demonstration” in the “Search” block
• Military HOMEFRONT at http://www.militaryhomefront.dod.mil/portal/page/mhf/MHF/MHF_HOMEPAGE, and type “autism demonstration project” in the “Search” block.

A quick checklist about the TRICARE Autism Demonstration Project is available at: http://www.tricare.mil/mybenefit/Download/Forms/Autism%20Checklist.pdf

Steps that must be taken to initiate services under the TRICARE Autism Demonstration Project include:

• Enroll your child in the Exceptional Family Member Program (EFMP).
• Register your child in the Extended Care Health Option (ECHO) program with the ECHO case manager of your regional contractor. Services may begin during the ECHO registration process. Your child must be 18 months or older.
• Submit your child’s IEP or IFSP documentation to the Managed Care Support Contractor (MCSC).
• Make sure that your child’s behavioral plan, developed by the Educational Interventions for Autism Spectrum Disorders (EIA) Supervisor, has been sent to the medical provider who will oversee your child’s autism care.

NOTE:  If your child is home-schooled and your state does not require an IFSP or IEP, you must provide a letter from your child’s PCP or specialized ASD provider verifying that the child’s disability related to autism results in dysfunction severe enough to require special education and other support services.

For TRICARE Autism Demonstration Project eligibility, your PCP should:

• Submit verification and date of a diagnosis of autism or ASD to the MCSC.

NOTE:  If the diagnosis was made by a provider other than a Specialized ASD Provider and officially recorded in the medical record on or after March 15, 2008, your medical provider must submit results of diagnostic testing and additional clinical information to the MCSC for review.

NOTE:  If the diagnosis of autism or ASD was made before March 15, 2008, your child does not need to be re-diagnosed with ASD or complete diagnostic testing, but you are still required to meet all other applicable requirements of the EIA Demonstration.

For your child to continue to receive services under the TRICARE Autism Demonstration Project:

• Ensure that standardized testing of your child’s language skills and adaptive behavior is completed in the first 12 months of receiving services. Language skills and adaptive behavior testing completed within the 24 months prior to initiation of EIA services under the TRICARE Autism Demonstration Project meets this requirement.
• Make sure that your child’s behavioral plan and EIA Progress Report, developed by the EIA Supervisor, have been sent to the medical provider who is overseeing your child’s autism care for review and approval every six months.

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FOCUS ON OAR RESEARCH:
Helping Parents With Their Children’s Eating Habits

“We hope to answer two questions with this study. The first is ‘What are the feeding patterns of children with autism like compared to children without autism?’ The second question is ‘Can we train parents of children with autism to implement some of the behavioral treatment strategies effective in managing mealtime difficulties and improving nutritional intake?’” explains co-researcher William Sharp, Ph.D., a behavioral pediatric psychologist at the Marcus Autism Center, Atlanta, GA.

Ultimately, Dr. Sharp and his co-researcher, David Jaquess, Ph.D., who is the director of pediatric feeding disorders and pediatric psychology programs at the Center, hope their OAR-funded study will lead to the development of interventions that parents can use with their children with autism spectrum disorders (ASD) who have feeding difficulties.

Previous intervention studies aimed at addressing the mealtime difficulties exhibited by children with ASD have focused exclusively on intensive feeding interventions, write the researchers in their proposal, and there is no research investigating the efficacy of parent-directed feeding therapy. This study seeks to test whether it is possible to extend the benefits of therapist-mediated behavioral feeding interventions to parents of children with ASD.

They propose to assess the types of feeding difficulties exhibited by children with ASD, as well as the effect that these difficulties have on a child’s nutritional status and family functioning; and to evaluate the impact of a parent-education intervention targeting problematic feeding behavior among children with ASD. Parents will participate in eight 1-hour training sessions focusing on teaching strategies to improve mealtime behaviors and introducing new foods into their children’s diets.  The investigators developed the curriculum and training manual based on behavior management strategies shown to improve behaviors among children with autism receiving more intensive treatment. 

Research in this area is important, Drs. Jaquess and Sharp write, as children with ASD display high rates of atypical feeding behavior resulting in significant nutritional deficits and medical issues. However, most studies to date have involved only parent-report measures of feeding behavior, which have limited validity, and there is a paucity of research investigating effective strategies for addressing the feeding difficulties exhibited by this population.

Drs. Jaquess and Sharp hope that direct observation of mealtime behavior and a focus on how parent training may ameliorate feeding-related difficulties, will provide a more comprehensive picture of the feeding difficulties exhibited by children with ASD and their treatment.

“Our goal for this study is to offer families a new level of treatment options for their children who have milder difficulties through parent training programs,” explains Dr. Sharp. He acknowledges that some children may still require more intensive services, but parent training programs for other families would provide a more cost-effective, easier means of dealing with mild feeding difficulties.

About the Study

The purpose of the current study is to investigate the topography and treatment of feeding difficulties related to autism spectrum disorders (ASD). Through this process, a set of comprehensive educational resources will be evaluated, which will provide practitioners and parents with a caregiver-driven level of intervention involving educational handouts and didactic training. 

Volunteer participants will be recruited from one or more local early intervention programs, parent support groups, and elementary schools for children with ASD in the Metro Atlanta area. Parents will be asked to nominate peers of their children without ASD as potential participants in the control/comparison group. A total of 60 children between the ages of 3 and 8 years will participate in the study. This age group was selected to capture children in early childhood who may benefit most from early intervention efforts, while maintaining a homogeneous set of feeding skills, food types, and food textures. The study will seek to recruit approximately 30 children with ASD and their families, as well as 30 comparison children.

This is a prospective study that involves three groups in a three-stage process, yielding a nested repeated measures design with a waiting list control group. Assessment will be conducted at each stage and will involve the same battery of questionnaires and direct observation procedures. This will allow for comparisons of eating patterns between groups of children with and without ASD while controlling for the influence of time, as well as comparisons between groups of children with ASD who receive the intervention at different stages.

During stage 1, all caregivers will be asked to complete detailed questionnaires about demographics, feeding behaviors, food preferences, ASD symptomatology, and areas of family life that may be affected by feeding problems (e.g., parental stress). At the same point in the study, a standardized feeding observation will be conducted.  Parents will serve as the primary feeders during the evaluation to eliminate possible effects of separation anxiety and/or novel feeder effects.

During stage 2, parents of half of the children with ASD will receive training to address feeding difficulties, while parents of the other half of the children with ASD will serve as a control group.  In stage 3, the second half of the parents will be trained. The format of the intervention will be the same during both stages of treatment.

Random assignment will be used to determine whether a family will participate in the first or second training session. The use of a waitlist control design for some participants will allow the researchers to compare feeding changes in each group and thus better determine if changes were the result of the intervention.

Disseminating the Results

Drs. Sharp and Jaquess plan to disseminate the results of the study through presentations, publications, and journals. They also plan to give talks and do community outreach to practitioners.

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NEWS FROM OAR

OAR’s Seventh Annual Conference Will Continue With Tracks and Featured Keynote Speakers

The 2009 Applied Autism Research and Intervention Conference will take place on Friday, October 23, and Saturday, October 24, in Arlington, VA. Over those two days, the Westin Arlington Gateway will house a collection of some of the greatest minds in the autism field today, including researchers, authors, educators, and other professionals.

The conference will feature OAR’s traditional format with four subject-driven tracks consistent with the conference’s theme, “Intervention and Education across the Lifespan.”  Each topic will highlight the current state of applied autism research with issues carefully selected due to their importance to parents, teachers, and professionals alike.

Friday’s tracks will once again be OAR-Sponsored Research and Research to Practice. This year’s conference will feature a new program in the OAR-Sponsored Research track with OAR-funded researchers presenting the results of their studies not only to conference attendees, but also to a panel of experts drawn from OAR’s Scientific Council. The audience will be able to observe the panel’s short evaluation of the research before they are included for a general question-and-answer period.

Saturday’s tracks will be divided into age groups: Education for School-Age Learners and Transition and Life in the Community. The former will target issues related to education and educational settings, while the latter examines the challenges of older learners with autism and important aspects of life outside the classroom.

Three keynote speakers will present during the course of the conference. Jed Baker, Ph.D., a clinical psychologist with over 15 years of experience leading therapeutic groups with children, adults, and families, will kick off Friday with a discussion on social skills training. Daniel Openden, Ph.D., BCBA, clinical services director for Southwest Autism Research & Resource Center, will close the day with a presentation about his work in the area of pivotal response treatment.

Paul Wehman, Ph.D., an OAR-funded researcher from the Virginia Commonwealth University Rehabilitation Research Training Center, will provide Saturday’s Opening Keynote Address. His topic, supported employment for individuals with autism, will offer an uplifting look at the future for persons on the spectrum.

Continuing Education Units (CEUs) will be provided from both the Behavior Analyst Certification Board (BACB) and the American Speech-Language-Hearing Association (ASHA). To receive ASHA CEUs, attendees will need to be present at both days of the conference.

Early registration is $75 for one day and $125 for both days. Fees are waived for persons with autism and RUN FOR AUTISM fundraisers. Scholarships are available on a case-by-case basis.

For more information regarding this year’s conference, please visit www.researchautism.org/news/conference or e-mail conference@researchautism.org.

Blue Iguana Benefit for Autism

On April 27, OAR will host its first Blue Iguana Benefit for Autism at the Blue Iguana restaurant in Fairfax, VA. The Blue Iguana and co-owner Tom Chakeres have been OAR supporters dating back to OAR’s first golf tournament in 2003. In December 2008, Assistant Manager Dave Clark approached OAR Executive Director Mike Maloney with the idea for hosting an autism benefit at the restaurant. After Maloney readily agreed, Clark presented his idea to Chakeres and co-owner Bill Loukas, who immediately gave him the green light.

“I’ve become more aware of autism through some of our customers and wanted to do something,” says Clark. “Our owners believe in supporting charities. They host an annual golf tournament to benefit the Special Olympics and have donated in support of OAR’s good work. They enthusiastically approved the event.”  

OAR will use the occasion to announce the winner of the Jae Davis Award for Community Service, an annual honor given to someone whose selfless service to the autism community mirrors that of the late Jae Davis and merits special recognition. The evening will feature a three-course dinner prepared by Executive Chef Eric Robertson and both a silent and live auction hosted by OAR. There are unconfirmed rumors that OAR will also feature a “Moustache Competition,” details to be announced. Dress is business casual.

The prize list for the auction continues to grow. Among the prizes already donated are: Washington Redskins autographed gear; a framed Pittsburgh Steelers #27, new Wall of Famer Rod Woodson jersey and other Steelers’ memorabilia; and a local weekend getaway at the Westin Arlington Gateway.

Reservations are being accepted on a first-come, first-served basis. Seating is limited to 75 guests. Tickets are $100.00 per person. Cost includes the three-course dinner with a glass of wine valued at $45.00. The remaining $55.00 is a charitable contribution. Proceeds from this event will directly benefit OAR research and information programs.

The Blue Iguana restaurant is located at Shoppes Lane in Fairfax, VA. For directions or to view a menu, please go to http://www.theblueiguana.com.

OAR will handle all reservations for the Blue Iguana Benefit for Autism. Please contact Mike Maloney to make a reservation at (703) 243-9727 or mmaloney@researchautism.org.

Important Dates Coming Up at OAR

March 31, 2009: The Jae Davis Memorial Award nominations deadline. This award is intended to recognize individuals whose actions serve to enhance the quality of life for those affected by autism in clearly measurable terms. To nominate an individual for this award, please send a letter to OAR describing the nominee and his/her special qualifications and accomplishments, along with two letters of support from persons unrelated to the nominee or to OAR. Neither the letter of nomination nor the letters of support should exceed two pages in length and must include full contact information.

April 3, 2009: The Applied Research Grant pre-proposal deadline. OAR is seeking to fund research studies that will produce practical results that promise some direct benefit for learners with ASDs, their families, and related service providers. For more information, please visit www.researchautism.org/professionals/grants/index.asp.

April 24, 2009: The Schwallie Family Scholarship application deadline. This program is now in its third year of giving deserving students on the autism spectrum financial aid to support their higher education. For more information on how to apply, go to www.researchautism.org/news/otherevents/Scholarship.asp.

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RUN FOR AUTISM News

Houston Kicks Off the 2009 Season!

Texas loves football, but for one weekend in January, Houston was all about running as it hosted winter’s most popular running event, the Chevron Houston Marathon and Aramco Half Marathon, which also kicked off OAR’s 2009 RUN FOR AUTISM. A record 18,000 participants, including a small but dedicated group running and raising money for OAR, registered for the event.

A number of first-timers joined a group of alumni runners to form a solid team for OAR for this event. OAR first became involved in the Houston events at the urging of Patti Breaux in 2005. Patti ran the marathon in 2005 and 2006 and has become a significant member of the RUN FOR AUTISM program, participating in the 2007 Marine Corps Marathon and becoming the top fundraiser for 2008 while running the Nike Women's Marathon last October.

Race weekend gets started with a large expo that takes place in the massive George Brown Convention Center. Ideally located within walking distance of downtown hotels and local eateries, the convention center was a great venue for the expo.

A beautiful sunrise greeted runners at the 7 a.m. start. The marathon and half marathon go off simultaneously on parallel streets and join the same course at mile three. Although the marathon takes top billing, the half marathon actually is double the field and accounts for 10,000 of the total runners. An additional 3,000 runners participate in the 5K event that starts 30 minutes after the longer races.

Regardless of which event a runner chose, the finish-line greeting was like no other because all post-race festivities took place inside the convention center where the highly coveted Under Armour finishers’ shirt is given to all Marathon and Half Marathon runners.

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Last year's top Houston fundraiser, Rev. James Grace, again ran the marathon, raising $8,000 with his effort and topping all fundraisers for 2009.

Last year’s top Houston fundraiser, Rev. James Grace, ran again this year, raising $8,000 with his effort and topping all fundraisers for 2009. Diego Gutierrez has been a part of the Houston effort from the outset and was back again this year, along with Brandy Maldonado, a veteran of three Houston teams. Scott Lowery, who came back to do the marathon after a year away from racing, joined the team for the second time and raised $2,700 through his network of friends, family, co-workers, and a corporate match from his company. Craig Hughes reunited with OAR at the Houston Expo, and he has already joined the RUN FOR AUTISM-Chicago team, looking forward to a fall trip to the Windy City with his family.

First-time marathon runner Rick Garza joined his father, a veteran runner of many marathons including Boston, in Houston to bring attention to the cause on behalf of Rick’s 6-year-old son, Tyler. Rick completed his first marathon and raised $2,800. “It is special to be running with my father and most importantly for autism research,” he told OAR. Rick is more than likely to run a few more marathons with the goal of someday doing Boston with his father.

Newcomer David Herzfeld also joined the team this year, completing the 26.2-mile course in exactly five hours, well-supported by his donors with a total of $2,100.

Father-and-son duo Chuck and Nick Sammons, along with Michelle Fitzwater, completed a big day for OAR by running the Half Marathon. All three vow to be back for next year’s Half Marathon.

The demand of the Houston races has become so big over the past few years that this year’s race sold out six months in advance of the January 18 race date. While part of the attraction is certainly the pleasant weather and flat course that seem to bring out fast times among the professionals and personal records for other runners, the great support that the organizing committee provides for each participant is the real reason why people keep returning year after year.

Houston proved to be a big success for OAR once again, raising over $22,000. With the addition of November’s Rock ‘N’ Roll San Antonio Marathon and Half Marathon now added to the season schedule, the RUN FOR AUTISM program has two opportunities to be part of a partnership race in Texas. It is not too early to sign up for the San Antonio race, which will also provide a great lead-in to the January 2010 Houston races and OAR’s biggest Houston team yet.

Sharks for OAR: Making RUNning FOR AUTISM into a Team-building Exercise

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Last year's top Houston fundraiser, Rev. James Grace, again ran the marathon, raising $8,000 with his effort and topping all fundraisers for 2009.

If Caryn Tijsseling, an associate at the law firm Lewis and Roca, LLP, hadn’t decided to form a company team to run for OAR at the Rock 'n' Roll Arizona Marathon and Half Marathon on January 18, 2009, Emily Bayton, another associate at the firm, would never have had a chance to participate in an event that meant far more to her than just getting in shape.

“Being the mom of a two-year-old, I trulyfeel for the parents and children dealing with autism and the support OAR gives to these families is wonderful. Moreover, supporting an external cause really motivated me to stick with the training and to get through the half marathon,” she explains.“I had a lot of friends and families donate money for OAR, and I wanted to do the best I could do during the half marathon to show appreciation for their support. Being a full-time lawyer and a mother, I don't have as much time to give back to the community as I would like, and this was a great way to get in shape and to give back at the same time.”

Those feelings reflect the feelings of all the team members, says Tijsseling. “We decided early on to partner with a charity. I saw OAR’s t-shirt when I ran the Chicago Marathon in October, and I thought it would be perfect. Most of us on the team are the parents of school-aged or smaller children, which made it a perfect fit. My son has learning disabilities so I have some perspective on raising children with challenges.”

While Tijsseling has been a runner and participated in marathons, doing a marathon as part of team didn’t occur to her until one of the firm’s partners noticed the brochure on her desk and suggested she organize a team.

As the team organizer, she would “absolutely recommend doing this to other companies trying to do something good for the community while also promoting a healthy lifestyle and offering employees a chance to get to know each other better.”

Tijsseling says that organizing a team was simple and created a bond among the team members. “I sent out an e-mail to the firm’s associates and about 15 people responded. Our firm is pretty active in the community.” And it wasn’t just people from Phoenix, where the firm’s main office is located. The firm had runners from Reno and Las Vegas, Nevada, as well as Tucson.

Team members included Emily Bayton, Scott Bennett, Flavia Campbell, Samuel Chang, Benjamin Clark, Emily Clark, Kristina Holmstrom, Peter Larson, Patrick MacQueen, Jason Morris, Marsha Peterson, Erin Szajna, and Jason Tijsseling (Caryn’s brother).

The Sharks, the self-deprecating name the team chose, bonded during their training. “It was a team-building exercise for us since we don’t get to see each other very often. That was the best part of doing this together,” Tijsseling says. “Seeing people out on course with the same shirt and running with them for a bit made the whole experience much better. It was fun to have that camaraderie and bonding as part of the event.”

Although four people had to drop out because of injuries (and one pregnancy), 11 people completed either the half marathon or the full one.

The team raised close to $2,500 altogether, and Tijsseling says she hopes they’ll raise even more the next time. “I’m sure we’ll have another team, and I’m hopeful we’ll do it again for OAR,” she says. “There’s no downside for any company to do something like this.”

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Salute
Two Runners Give OAR a Raise

By running just five miles each, New York City lawyers Nicole Stephansen and Rob Hesketh contributed almost $600 to OAR and raised awareness about OAR and autism among their families and friends. And it was all made possible by the GiveForward Web site (www.giveforward.org).

In fact, GiveForward is where it all started. Nicole and Rob, who have been dating for a couple of years, are friends with GiveForward’s co-founder, Ethan Austin. “Ethan challenged us to pick an organization and participate in a New York City race to raise money,” says Stephansen.

GiveForward makes it easy for people to raise money for causes they support, she says. “We sent e-mails to friends, family, and coworkers, referring them to our GiveForward page, which linked to OAR.” Users can also use the Web site to send e-mails from there, if they prefer. “It’s extremely easy to set up the page, and friends and family members go directly there to donate. We didn’t have to do a lot—GiveForward took care of almost everything.”

Giving People an OARful

Picking OAR as the recipient of the fundraising was pretty easy too, adds Hesketh. “Nicole heard about OAR through a friend who ran the Chicago Marathon for OAR. We both thought it was a great organization. My younger brother was diagnosed with Asperger Syndrome at 18, just a couple of years ago so autism is an important issue for me.”

Stephansen’s mother is an elementary school teacher who works with children with autism spectrum disorders. “We really liked that OAR not only raises awareness but supports research. That aspect really stood out for me,” she says.

“So little is understood about autism. More research needs to be done to understand the causes and to improve treatments,” says Hesketh.

That they could use a run to raise awareness and funds for OAR just made the whole project more fun. Stephansen who has participated in a few runs, though no marathons yet, enjoyed running with Hesketh in his very first run, which, she adds proudly, “he finished!”

“I had never run that far and didn’t train for it,” Hesketh notes wryly. “At any point when I was struggling, I thought about what I was running for and my brother, and I couldn’t stop running.”

About GiveForward

It’s all about easy giving, says Ethan Austin, co-founder, about the GiveForward site (www.giveforward.org) he and Desiree Vargas started in 2008. “We wanted people to have an easy way to raise money for any charity they chose.”

“It takes about 20 minutes or so if fill out a profile to set up the page. A fundraiser can e-mail friends and family from the site to let them know about it. Once the fundraiser is done, we send a check to the recipient,” Austin explains. GiveForward charges a 5.6 percentage of funds raised to cover expenses.

Austin explains that anyone can create a page and set their own parameters, including a fundraising goal and the date for the page to expire. “If you need to extend that date to keep fundraising or modify your fundraising goal, you can do that,” he says.

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