Message: On Autism Awareness

By Peter Gerhardt, Ed.D.

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Peter Gerhardt, Ed.D.

April is Autism Awareness Month, and I think I can say without fear of contradiction, the first decade of the new century has seen the greatest increase in autism awareness since the disorder was first identified by Leo Kanner in 1943.  Granted that may not be saying much since, for most of its history, autism has been considered a low-incidence disability resulting in, well, low-incidence awareness, but this is still a very good thing.  However, while many, if not most, people in the United States are now more aware of autism and the autism spectrum, in what ways this increased awareness benefits the autism community is less clear.  If we assume that the primary goals of any community awareness campaign are the provision of a more accurate understanding of the disorder, the reduction in any associated stigma, increased funding for research into etiological factors and effective clinical intervention, and greater availability of effective services for individuals at any age, then I think we have had some great successes.  At the same time, we continue to be faced with considerable challenges.

Has there been a reduction in stigma associated with being on the spectrum or having a child on the spectrum?  It’s actually a research question, but my sense is yes. In the almost 50 years since the debunking of the “refrigerator mother” theory of causation, autism has come to be widely recognized as a biologically based disorder that results in an array (or spectrum) of possible outcomes for which neither parent’s behavior is responsible.  For families, negative perceptions have been reduced, in part, due to the sheer numbers of individuals now diagnosed on the autism spectrum.  It seems as if everyone today knows someone, or knows someone who knows someone, who has a child with autism.  Familiarity and exposure work wonders to reduce negative stigma.  If we then add to this the public’s growing awareness of adult self advocates speaking for themselves as part of the neurodiversity movement, stigma, it seems, is somewhat on the run.  That’s a very positive outcome.

Conversely, however, along with this reduction in stigma has come a growing public interest in sensational, autism-related conspiracy theories (e.g., collusion between “Big Pharma” and government agencies resulting in toxic vaccines); unproven dietary or “natural” interventions often promoted on late night talk shows (e.g. hyperbaric oxygen, vitamin supplements, etc.); or finding cause for the rise in autism diagnoses in the introduction of color television, disposable diapers, plastic baby bottles, or having infants sleep on the backs to avoid sudden infant death syndrome (SIDS) (all of which we have received inquiries about).

Most problematic, however, is the degree to which the general public has accepted a link (unproven though it is) between vaccines and autism resulting in increasing numbers of children not being vaccinated for preventable, and at times fatal, childhood diseases.  For example, in San Diego in 2008, a measles outbreak resulted in 839 exposed persons, 11 actual cases (all in unvaccinated children at a net public-sector cost of $10,376 per case), and the hospitalization of an infant too young to be vaccinated.  Although 75 percent of the cases were persons who were intentionally unvaccinated, 48 children too young to be vaccinated were quarantined.  In discussion groups and survey responses, the majority of parents who declined vaccination for their children were concerned with vaccine-adverse events (Sugarman, et al, 2010).  Unfortunately, it does seem that the reduction in negative stigma has not consistently resulted in a clearer, more accurate understanding of the disorder.  This is not a positive outcome and, in fact, does little to help advance the cause of supporting people with autism. 

Another benefit of the current level of autism awareness has been a significant increase in the funding for autism research.  Between additional funding at the federal level and the funding made available through private foundations or nonprofit organizations such as OAR, research funding has increased, on average, 15 percent per year from 1997 to 2006 (Singh, et al, 2009).  Further, the authors note that 65 percent of funding went to basic research as compared to 15 percent for clinical, or intervention, research, and 20 percent to translational research.  I should note that recent federal funding increases, including stimulus dollars, have pushed the increase even higher in recent years.  While I would most certainly prefer a greater emphasis on clinical research than currently exists, this is all a very good thing.

Last on the list of expected benefits from increased autism awareness is the greater availability of effective services across the lifespan.  There certainly has been an increase in the availability of early intervention services and of specialized, autism-specific educational services available under IDEA through school districts.  The overall quality of these services, however, is an empirical question and one whose answer we would all benefit from learning.  The most significant challenge in terms of service availability, however, is that facing adults with autism.  As noted by Advancing Futures for Adults with Autism (www.afaa-us.org), an entire generation of our nation’s most vulnerable citizens is about to leave the entitlement-based world of education and enter the overwhelmed and under-funded world of non-entitlement adult services.  While exceptional adult programs and services exist in every state, they tend to be more the exception than the rule (and most are already fully subscribed), leaving many individuals and their families to, in effect, fend for themselves.  So what can autism awareness do to address this no-longer-pending crisis?

Many national organizations including OAR, Autism Speaks, Advancing Futures for Adults with Autism, the Southwest Autism Research and Resource Center (SARRC), and the Autism Society of America are actively advocating for the greater availability (and greater appropriateness) of programs serving adults.  In addition, there is a great need for these organizations to now focus some part of their awareness campaigns on the right of adults with autism to live, work, play, and socialize in the community of their choice.  And to make the public aware that, while autism remains a significant, challenging, and sometimes devastating developmental disorder, adults with autism can be interesting and helpful neighbors, dedicated and competent employees, and engaging and worthwhile friends.  Once that message is widely understood, then we, as a community and as a society, will more fully realize the potential benefits of autism awareness.  Until then, however, there remains much work to done. The process by which this can be achieved is moving forward, maybe even quicker than anyone anticipated.  And that is a very, very good thing.

References

Singh, J. Illes, J., Lazzeroni, L., and J Hallmayer, (2009). Trends in U.S. Autism Funding. Journal of Autism and Developmental Disorders, 39, 788-795.

David E. Sugerman, Albert E. Barskey, Maryann G. Delea, Ismael R. Ortega-Sanchez, Daoling Bi, Kimberly J. Ralston, Paul A. Rota, Karen Waters-Montijo, and Charles W. LeBaron. (2010). Measles Outbreak in a Highly Vaccinated Population, San Diego, 2008: Role of the Intentionally Undervaccinated.  Pediatrics: peds.2009-1653v1-peds.2009-1653.

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OAR News

OAR Announces Conference Venue and Opens Registration

After countless hours spent searching for the best location for OAR’s 2010 Applied Autism Research and Intervention Conference, OAR has decided upon the Sheraton Crystal City Hotel in Arlington, VA.  With over 6,000 square feet of ballroom space, this facility will easily fit OAR’s time-tested conference format, with keynote addresses for all attendees and two tracks each day for breakout sessions.  In addition, the large atrium just outside the ballroom will allow an even greater selection of exhibitors this year.

OAR has contracted a room block at the Sheraton Crystal City hotel.  A discounted rate of $180/night plus tax will be available to all attendees, as well as RUN FOR AUTISM runners in the Marine Corps Marathon.  Individuals can book directly with the hotel, but be sure to mention the Organization for Autism Research in order to receive the discount.  The cut-off date for this room block is September 30, 2010.  Rooms are limited and reservations will be accepted on a first-come first-served basis, so book soon!

The Sheraton is conveniently located directly adjacent to the Crystal City Metro Station (on the Blue/Yellow lines) and only one mile from the Ronald Reagan National Airport.  For those who will drive to the conference, there is parking on premises as well as public parking nearby.  As for local leisure activities, attendees will find over 200 dining and shopping options just a few blocks away at the Crystal City Shops.  For more information on the Sheraton Crystal City, visit www.sheratoncrystalcity.com. 

With the venue now set, OAR has opened Early Bird registration.  To read more about OAR’s conference or to register, please go to www.researchautism.org/news/conference/index.asp

Latino Outreach in Dallas Highlights the Need for More

OAR’s Latino outreach efforts in Texas moved to Dallas for the first time March 19-20, with a training session for 10 promotores.  In this instance, OAR supported its Latino community partner, Dia de la Mujer Latina (DML), for the third time. 

DML founder, Venus Gines, who conducted the training during the pilot study in Atlanta in 2008 and a training session in Houston last April, performed those duties once again.  Even she was surprised by the feedback. “I couldn’t believe the response on autism from the Dallas promotores,” Gines reported. “The booklets are gone, and we had over seven who volunteered to speak on autism.”

Gines, whose accomplishments in promoting health issues affecting Latina women are extensive, has gained new insight into autism as a health issue through her work with OAR and this program.  The Dallas training highlighted her rising awareness of the unmet need within this community.

“I never realized how many mothers are struggling with this issue,” she continued.  “One of the promotores began to cry in class because she saw all the signs in her young son. Wow, it had such an impact on me and the others!”

Gines and DLM will host another training session in Houston in May and have plans to conduct training in other cities later in the year.  The training consists of a six-hour syllabus that focuses on early childhood developmental milestones and the warning signs of autism.  Each training is followed by a practical application during a community health fair or clinical setting.

Texas is perhaps the only state that officially recognizes and certifies promotores within its public health structure. DLM applied for and received state certification as an agency qualified to train promotores, based in part of the OAR Promotora Training syllabus.

OAR developed its Latino Outreach program through a grant from the Centers for Disease Control and the Learn the Signs. Act Early. Campaign.  It continues in its present form with funding and program support from the CDC and Porter Novelli, the CDC’s contractor for the campaign.  For more information on OAR’s program initiatives in this area, please contact OAR Executive Director Mike Maloney.

OAR-funded Study Awarded $775,000 in NIH Funding

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Laura Anthony, Ph.D. (left) and Lauren Kenworthy, Ph.D., OAR-funded researchers at Children's National Medical Center in Washington, DC, recently found out that NIH selected their OAR project for expansion.

OAR-funded researchers Laura Anthony, Ph.D., and Lauren Kenworthy, Ph.D., recently received very good news. NIH is funding an expansion of the two-year study that OAR funded in 2007. “The award given Dr. Anthony and Dr. Kenworthy is an example of how critically important the work of OAR really is,” OAR President Peter Gerhardt noted. “Absent OAR’s initial funding, a highly promising intervention would probably have gone unnoticed, unfunded, and ultimately, unavailable to the autism community. This is great news!”

“We’re very excited about the larger-scale launch of the intervention. OAR was the first to take a leap of faith with this project, and we are so grateful,” explains Dr. Anthony, who is part of the Center for Autism Spectrum Disorders at Children’s National Medical Center in Washington, DC. She is the study’s principal investigator, working with the center’s director, Lauren Kenworthy, Ph.D., as the co-investigator.

Drs. Anthony and Kenworthy and their team developed an intervention to help children with Asperger Syndrome/High-Functioning Autism (AS/HFA) improve their flexibility in school. Because there are no tested school-based executive function interventions for children with AS/HFA, the project builds on an executive function cognitive remediation intervention for children with traumatic brain injury.

What makes the intervention unique, Dr. Anthony says, is that it addresses the cognitive aspects rather than the social skill deficits of autism spectrum disorders.

They partnered with the Ivymount School, a private school in Rockville, MD, that has developed the Model Asperger’s Program for children in 2nd-9th grades. The project was split into two phases: development and testing. In the development phase, the investigators, working with Ivymount staff and parents, created an executive function intervention that can be used by teachers, clinicians, parents, and others. At the end of the development phase, they wrote a manual to guide teachers through the process.

The intervention is aimed at teaching flexibility skills in the classroom through an integrated program of cognitive instruction, guided practice, and strategies for generalization. Incentives for change were also built into every component of the program, including helping the students identify and work toward their own goals.

The NIH grant will help the center expand the use of the intervention into public schools around the Washington, DC area, which will extend the program to 45 more children with AS/HFA. The project will also include a companion parent component with training sessions, workshops, and a manual.

Graduate Research Grant Deadline Approaching

OAR’s annual Graduate Research Grant program invites applications from students pursuing master’s or doctoral degrees.  OAR awards grants to those students whose proposed research will produce practical and clearly objective results that may aid parents, families, professionals, and people with autism in their daily lives.

The maximum grant award is $2,000 for doctoral or post-doctoral candidates and $1,000 for master’s candidates. OAR will consider making up to 15 awards this year, for a total of $25,000 in grants.  Research must be conducted during the grant period, September 1, 2010 - December 31, 2011.

Applications are due on June 4, 2010.  To read more information on the Graduate Research Grant program, or to download an application, visit www.researchautism.org/professionals/graduategrants/index.asp. For questions, e-mail research@researchautism.org.

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News from the RUN FOR AUTISM

Just Do It. Now. Or You Might Miss the Cleveland Marathon and Historic Half Marathon

If that little voice about spring and running and raising money for OAR just won’t be quiet, here’s your chance to silence it. Sign up now for the Rite-Aid Cleveland Marathon, Half Marathon and 10K or the Historic Half Marathon and Semper Fred 5K. Both races are on Sunday, May 16 and offer options to runners of all abilities.  You can sign up through OAR until April 7 or through the race Website until May 13.

Come to Cleveland
In Cleveland, OAR is already assured of fielding its largest team ever with more than 80 runners and walkers already signed up.  Participants can choose between the marathon, half marathon, or 10K.  Runners and walkers alike can take in the sights of downtown Cleveland’s major landmarks, including the Rock and Roll Hall of Fame, Browns Stadium, Ohio City, and the Cleveland Play House, on this relatively flat course.

Entries for the marathon, half marathon, and 10K are still available, and you’ll receive a special discounted rate if you participate with OAR. To access the discount code and to find out more, visit www.researchautism.org/news/run/index.asp.  For more information, contact RUN FOR AUTISM Coordinator Sarah Schuyler at run@researchautism.org.

RUN through History
If you are a history buff, the Historic Half Marathon is the race for you!  On the 13.1-mile course, runners pass through a city where of one of the greatest Union defeats during the Civil War occurred.  Run along Sunken Road, the base of an impenetrable Confederate defensive stronghold and the scene of vicious fighting during the Battle of Fredericksburg, and through the peach blossoms that line the old Rappahannock Canal.

If you are not ready to take on the half marathon, then run or walk the Semper Fred 5K and take part in all the race-day festivities.  Entries are only available for a very limited time, so secure one today.  For more information, contact RUN FOR AUTISM Coordinator Julia Hornaday at run@researchautism.org.

OAR Announces DC Marathon Training Program through DC Fit

OAR is pleased to announce a partnership with DC Fit, the local affiliate of USA Fit, to provide a training program for DC-area RUN FOR AUTISM participants in the Marine Corps Marathon and 10K.  Through this arrangement, OAR runners can link up with experienced coaches and train together at weekly long runs. DC Fit plans to host weekly sessions in Northern Virginia, DC, and Maryland, and will also offer day-by-day training schedules, informational seminars, and fun activities for participants.  OAR will cover the costs for all RUN FOR AUTISM runners raising money for one of the fall races.

If you are interested in achieving your personal fitness goals in a non-intimidating and fun environment with some of your fellow RUN FOR AUTISM runners, then don’t miss the training program kickoff on May 15 at 8 a.m. in East Potomac Park.  To participate or for more information, contact run@researchautism.org. 

Represent OAR by Volunteering at the Pittsburgh Marathon

The RUN FOR AUTISM is looking forward to its exciting debut at the Pittsburgh Marathon on May 2. Although registration is no longer open for race participants, we invite you to join us as a volunteer!

Share the day with the RUN FOR AUTISM team by helping out at the Health and Fitness Expo on Friday, April 30 between 11 a.m. and 7 p.m. or on Saturday, May 1 between 9 a.m. and 5 p.m. Volunteers will help OAR staff members represent the organization, field questions from Expo attendees, recruit future runners, and hand out literature. Shifts are flexible and last two to three hours. OAR gladly provides a free RUN FOR AUTISM t-shirt to all who lend their time, and community service letters can be provided for school credit.

If you are interested in helping the cause in Pittsburgh, please e-mail Lily Matusiak at run@researchautism.org. We hope to see you there!

The Sun Smiled on NYC Half Marathon

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OAR runner Jonathan Kowalski outpaces other runners as he makes his way through the buildings of Times Square during the New York City Half Marathon.

Only ducks and fish would have considered a half marathon fun in the days before the March 21 New York City Half Marathon when the city was swimming in torrential downpours. But race day brought sunny skies and perfect weather for the RUN FOR AUTISM team to run the New York City Half Marathon through the streets of Manhattan.

Race weekend activities began on Saturday afternoon with a casual runners’ meet-up at Grey Dogs Chelsea for some pre-race carbs, caffeine, and the opportunity for the team to meet Bill Donlon, one of OAR’s board members, and Lily Matusiak, RUN director. The meet-up also provided the team an opportunity to meet their fellow teammates, trade race day tips, and speak about why they choose to “RUN FOR AUTISM.”

At 7:35 on Sunday morning, 54 RUN FOR AUTISM runners and 11,400 others took the first steps of the 13.1 mile race, making their way around the Central Park loop past spectators, friends, and family. After their jaunt through Central Park, the runners made their way downtown toward Times Square. The often jampacked and busy streets of this popular tourist destination were open only to those with race bibs on, now over halfway to the finish line. For many of the OAR runners, this was the highlight of the race.

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OAR runner Lee Siracuse relaxes after a run well done for OAR in the New York City Half Marathon.

Donlon and Matusiak saw most of the team after the race, congratulating them at the Finish Festival Charity Village. The congratulations came not only for conquering the half marathon, but also for collectively raising over $80,000—a new record for OAR’s participation in this race. As always, the New York City team included some impressive runners and fundraisers. RUN FOR AUTISM first-timers Ragui and Ayiesha Selwanes ran the race together and led the fundraising with a total of over $7,250. Close behind them in the fundraising was Len Ellis, who raised $5,325 for autism research, bringing home medals for both of his daughters.

Running and fundraising together as a team, Mike Tilton, Sarah Tilton, Chris LaSaracina, and Amanda LaSaracina ran in honor of Chris and Amanda’s son, Colin, raising over $4,500. Bitten by the running bug, Mike is already looking ahead to the fall for another race and opportunity to run with OAR.

OAR also had several RUN FOR AUTISM-NYC alumni try their hand at this year’s spring race. These returnees include Jim Holohan, Jeff Kintzer, Randy Horowitz, Amy Thomases, and Chris Adamo. Always in awe of our veteran runners, OAR is thankful for the almost $10,000 that they raised.

Though the 2010 race is only a few weeks behind us, the New York Road Runners have already announced next year’s race date: March 20. After such an amazing race day, you can bet that the RUN staff is already looking forward to and planning for the half marathon in the City that Never Sleeps in March 2011.

For more information on how to be part of the 2010 RUN FOR AUTISM team or anything else concerning the RUN FOR AUTISM, contact OAR by e-mail at run@researchautism.org or by phone at 1-866-366-9710. Find us on the web at www.runforautism.org.

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News from the Autism Community

Towson University Seeks Adults with ASD for Research Study on Social/Emotional Functioning

Researchers at Towson University are seeking adults 18 years and older who have been diagnosed with an autism spectrum disorder to participate in cutting-edge research on social and emotional functioning. Participants need the have basic language comprehension in order to complete the tasks.

This study will explore the role of the self in perspective taking and empathy abilities. Of particular interest is the relationship between understanding one’s own thoughts/emotions and then being able to infer those thoughts/emotions in others.

• If you are interested, here are the steps to follow in order to participate: Contact the research team by phone or via the e-mail address below to set up an appointment (contact information below).
• Meet with the research team at the previously agreed upon time and location.
• After talking with the research team about your rights as a volunteer, sign a consent form stating that you wish to participate.
• Respond to a variety of questions on a computer about your social/emotional functioning.
• Read a series of short stories on the computer and answer questions about what you think the characters are thinking or feeling.
• Complete a quick language assessment.

Each participant will receive $20 in appreciation for his/her time and participation.

The International Review Board for the Protection of Human Participants at Towson University has reviewed this study.

Contact Information

C. Alix Timko, Ph.D. (Primary Investigator)

Kerry Whiteman (Co-investigator)

Email address:TOM.empathy@gmail.com

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RUN Profile

A Bridge To Understanding

Ragui Selwanes is not a lifelong runner, he wants you to know, and neither is his wife, Ayiesha. “We started running for the first time in our lives last year. It was a slow start with our first four-miler being an accomplishment. After that, everything was inevitable.”

Inevitable in the case of the Selwanes being training for and running half and full marathons and raising money for OAR in the process. “The NYC Half Marathon [on March 20] was our second half marathon race. We also participated in the Central Park Half Marathon and recently completed the Gasparilla Full Marathon down in Tampa, FL.”

Raising money for OAR was the latest step for the Selwanes, with the New York City Half Marathon the first one they ran for OAR. Residents of Queens, the Selwanes’ two small children recently entered school in New York City. “My wife and I have been amazed at the number of children we have met who have some form of autism, at varying degrees across the spectrum. It is not hard to realize that autism is one of the most critical conditions affecting our children today, and something we all need to align our efforts around to get smarter and more informed about,” Selwanes explains.

They are not born fundraisers any more than they are born runners. “We absolutely hate fundraising,” Selwanes says, “and to date have shied away from it entirely. Interestingly enough, when it is something you believe in, it is actually no skin off your back. Autism affects everybody, making it very simple to ask for money. I also think that awareness is increasing across the board and, certainly in the circles we are a part of, becoming smarter about autism is a requirement, not a philanthropic endeavor.”

The Selwanes have raised about $7,250, with additional corporate matching funds anticipated.  “This amount was raised by a rather small number of donors, so we are sure that they see its importance as well,” says Selwanes.

OAR was a natural fit for him and his wife, he says, since they were looking for an organization that focuses on autism. With a little research, they came across OAR and “were instantly aligned with its philosophy and lack of treating autism as an illness or disease. Autism is not a condition to apologize for or regret, but it is a condition that requires understanding, tolerance, and insight, which can only be obtained with research and the crucial dollars to fund that research.”

Selwanes and his wife pin high hopes on OAR and organizations like it because they are convinced that effective communication is probably the biggest barrier people with autism have to overcome. “Autistic individuals have a different way of learning, expressing themselves, and communicating. We need an effective way to bridge understanding.”

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HOW TO: From Kathy Koenig

By Kathleen Koenig, MSN, Associate Research Scientist, Yale Child Study Center

Losing the Asperger Disorder Diagnosis: What Does This Really Mean?

Kathleen Koenig, MSN, is an advanced practice registered nurse, clinical nurse specialist in psychiatry and an associate research scientist at the Yale Child Study Center. Koenig received her master's degree from the Yale School of Nursing and was the recipient of a National Institute of Mental Health Chronic Care Training Grant. She has experience working with children, adolescents, and adults in inpatient and outpatient psychiatric settings, with special expertise dealing with adults with chronic mental illness, including schizophrenia and bi-polar disorder. Since 1995, her work has focused on the clinical evaluation of children with developmental disabilities, including Fragile X syndrome, Williams Syndrome, Prader-Willi Syndrome, and Autism Spectrum Disorders. An OAR-funded researcher, she has been actively involved in intervention research to address behavioral impairments and core impairments of autism spectrum disorders.

The Diagnostic and Statistical Manual of Mental Disorders is a standard classification of mental disorders generated by the American Psychiatric Association. Each disorder has a list of specific criteria, often with qualifiers to denote severity or the absence/presence of particular symptoms. The first edition of the DSM was published in 1952 by the American Psychiatric Association, with input from the U.S. military and from the World Health Organization, which had published a classification system known as the International Statistical Classification of Diseases.

The DSM classification system was useful for assigning psychiatric diagnoses and for collecting statistical data on the prevalence of particular illnesses.

Understanding the DSM

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Kathleen Koenig, MSN

The DSM was revised in 1968 (DSM-II) and again in 1980 (DSM-III). The DSM III was the first version of the manual to include “infantile autism” as a separate diagnostic category. The criteria for the disorder included deficits in the development of language, atypical patterns of speech, lack of responsiveness to others and resistance to change, with an onset before 30 months of age. Leo Kanner’s paper entitled Autistic Disturbances of Affective Contact, published in 1943, was central in defining the characteristics of the disorder as listed in the DSM III. It’s worthwhile to know that Hans Asperger published a description of children entitled Autistic Psychopathy in Childhood in 1944, although that manuscript was written in German and not translated to English until 1981.

In 1994, the DSM-IV was published, which included Asperger Disorder as a separate diagnostic category. The two features of Asperger Disorder that distinguished it from autism were the absence of communicative impairment and the absence of cognitive impairment. The degree to which autism and Asperger Disorder are similar or different has become the major focus for researchers and clinicians when considering how to improve categorization for the DSM-5.

At present, the DSM IV is used for a variety of purposes. Mental health clinicians, including psychiatrists, psychologists, social workers, and others use the diagnostic categories determined by the DSM IV as a way to understand clusters of symptoms, and importantly, to have a common language to use when talking to colleagues. Scientists who research psychiatric disorders use the criteria of the DSM to select subjects for study, and of course, to communicate their findings to other scientists and the public. Public health scientists and professionals use these diagnostic labels to understand the degree to which particular illnesses are prevalent and how this impacts the use and cost of community resources. Finally, insurance companies use this information to categorize disorders for billing purposes.

The DSM is under revision once again, and the most recent proposal includes removal of Asperger Disorder from the manual, subsuming it into the Autistic Disorder category. The current proposal is that persons meeting criteria for Autistic Disorder meet criteria in the following three categories:

• Clinically significant, persistent deficits in social communication and interactions, as manifested by all of the following:
  • Marked deficits in nonverbal and verbal communication used for social interaction
  • Lack of social reciprocity
  • Failure to develop and maintain peer relationships appropriate to developmental level
• Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:
  • Stereotyped motor of verbal behaviors or unusual sensory behaviors
  • Excessive adherence to routines and ritualized patterns of behavior
  • Restricted, fixated interests
• Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities).

Why Make the Change?

Before addressing what these changes might mean for parents and their children with an autism spectrum disorder, let’s consider the reasons why this change in categorization is being considered. Beginning even before 1994, clinicians were using the diagnosis of Asperger Disorder to refer to individuals who showed a social disability similar to autism, but had strong formal language skills and often, an average or higher than average IQ. Once the diagnosis was firmly established, a host of studies were conducted to clarify how these two disorders were distinct in presentation and possibly in etiology. Much of the research on autism spectrum disorders focuses on endophenotypes, particular sets of characteristics within a disorder that might have the same genetic etiology. Further, there is the notion that distinct endophenotypes might respond to different kinds of treatment. In this regard it is important to get as specific as one can when delineating what symptoms constitute a particular disorder. Now that the proposed changes have been made, studies of the new classification system (called field trials), for this disorder and for others will begin.

The problem that emerged with the subsequent research after 1994 is that most studies that were carefully done failed to find any basic differences between the two disorders, autism and Asperger Disorder. If one used the criteria for the disorders as a way to characterize subjects for a study, then of course differences in language and cognitive functioning were noted, but this tells us nothing about what other real differences might exist. Further, when studies looked for differences while eliminating the effects of language and cognitive impairment, they have not been consistently noted. Another interesting fact is that if one compares the characteristics of the affected children described by Kanner and Asperger, they are extraordinarily similar. Lorna Wing, the physician who described Asperger’s work to the English-speaking world, noted that there were no qualitative differences between Asperger’s description and Kanner’s description. In addition to the lack of strong research support for distinguishing the two disorders, clinicians and researchers have not been able to consistently agree on who has what diagnosis, even with the criteria laid out in the DSM-IV.

Strategies for Parents

If you are a parent, what is likely most important, however, is how this change in diagnostic classification will affect your child. If your child has been diagnosed with Asperger Disorder, and you feel this has given teachers, care providers, and interventionists a more subtle understanding of your child, then you may be upset with this proposed change. In this situation, it will help to identify what particular strengths and vulnerabilities your child shows, so that these can be clearly communicated to providers, irrespective of the diagnostic label. Some parents have felt that it is somehow better for their child to be diagnosed with Asperger Disorder than with high-functioning autism, although this assumption is not borne out by the facts. There are individuals with Asperger Disorder who are much more disabled in terms of social relationships and independent living than others diagnosed with high-functioning autism.

Another concern might be that the diagnosis of autistic disorder will convey global impairment of a severity that is inconsistent with your child’s strengths and the severity of his/her social disability. There is the worry that other people, whether interventionists or teachers, might tend to treat all these children in the same way, despite very real differences. Two strategies will help with this, if it is occurring.

One is to refer to the DSM 5 qualifiers on severity. At present, the DSM work group focusing on autism spectrum disorders is considering additional qualifiers for autistic disorder, which will include designations for intellectual disability, if appropriate, and for mild, moderate, or severe impairment based on adaptive functioning. This should be helpful for obtaining services, for example,  for a bright child who does well with academics and standardized testing, but functions very poorly in social settings and with peers.

An even more effective strategy will be to use the framework for autistic disorder as it is proposed to write an extensive description of your child or the child you are working with in order to clarify what particular areas of impairment need to be addressed. Further, if there are concerns that go beyond what is specified with the proposed criteria, such as hyperactivity, impulsivity, or anxiety, these can be listed separately and considered as specific targets for treatment, apart from the autistic disorder diagnosis. This can be advantageous in focusing teachers or parents on the need to address behavior or challenges that might be exacerbating the autism symptoms.

Finally, it is worthwhile to remember that the adage that “children on the spectrum are more different than they are alike” is still  true. Every child, teen, or adult diagnosed with Autistic Disorder needs a customized intervention plan, tailored to his or her specific learning profile and targeting each individual child’s areas of difficulty.

References

http://www.dsm5.org

Ghaziuddin, M. (2010) Brief report: Should the DSM V drop Asperger Syndrome? Journal of Autism and Developmental Disorders, published online.

Kamp-Becker et al. (2010). Categorical and dimensional structure of autism spectrum disorders: The nosological validity of Asperger Syndrome. Journal of Autism and Developmental Disorders, published online.

Sanders, J. (2009). Qualitative or Quantitative Differences between Asperger’s Disorder and autism?  Historical Considerations. Journal of Autism and Developmental Disorders, published online.

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SCIENCE, FADS, and BEHAVIOR ANALYSIS

By Thomas Zane, Ph.D., BCBA-D, Center for Applied Behavior Analysis at The Sage Colleges, Troy, New York

Before and After May Not Prove the Case

The Use of Pre-Post Test Designs to Evaluate the Effectiveness of Autism Treatments

Thomas Zane, Ph.D., BCBA-D, a licensed psychologist, is an associate professor in the School of Education and the founder and director of the Center for Applied Behavior Analysis at The Sage Colleges. He has published in various journals and books and presented at regional, national, and international conferences. His research interests include teacher training, staff development, and evidenced-based practice in autism.

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Dr. Thomas Zane, Ph.D., BCBA-D

When considering what treatment to use when working with children with autism, the general thought is to select a treatment that has “evidence” of being effective. A prerequisite to accessing clinical treatment is to understand which treatments have such evidence and which do not. And a prerequisite to determining what treatments have actually been proven to be “evidenced-based” is understanding what allows a research study to give valid and believable results. 

Consider a study recently published by Rossignol and Rossignol (2006), in which they assessed the effect of a hyperbaric oxygen chamber on a range of symptoms of six children diagnosed with autism. Prior to starting the hyperbaric oxygen therapy (HBOT), the researchers assessed the participants on three measures, the Autism Treatment Evaluation Checklist, the Childhood Autism Rating Scale, and the Social Responsiveness Scale. The children participated in HBOT for 40 one-hour sessions, and the researchers then re-assessed the participants using the same measures as in the pre-test. For most of the children, the post-test scores were lower on each assessment. (For these instruments, a lower score suggests fewer symptoms of autism and improved functioning.)  The authors suggested that the HBOT was responsible for the improvement.

Consider a study by Gutstein, Burgess, and Monfort (2007), in which they assessed the effectiveness of Relationship Development Intervention (RDI), an autism treatment. The authors selected 16 children with autism and reviewed their files, noting their test scores on various measures prior to receiving RDI, subsets of the Autism Diagnostic Observation Schedule and Autism Diagnostic Interview-Revised.  Additionally, parents provided information about each child’s educational placement (on a continuum of intrusiveness) and level of “flexibility” (i.e., child’s comfort level reacting to change in his/her life and routine). After obtaining these measures, the participants received RDI for an average of 18 months. Following treatment, Gutstein, et al. conducted post-test assessments using the same measures as the pre-test. For most children, the authors concluded that the post-test scores improved over pre-test scores, and suggested that RDI was responsible for the improvement.

Researchers and clinicians often attempt to demonstrate the effectiveness of an autism treatment by using this common “pre-post” test design (also called “before-after, “AB,” and “one-group, pretest-posttest design,” e.g.,  Drew, Hardman, & Hosp, 2008; Fraenkel & Wallen, 2009). The general strategy in a pre-post test study is to recruit one group of subjects, obtain some measurement of the critical dependent variable(s) hypothesized to be changed by the treatment, implement the treatment protocol, and then the re-administer the same measurement as pretest. There is an assumption that if the post-test scores have changed positively from the pre-test scores, then the change is due to the treatment. Many researchers and treatment developers use this basic design (e.g., Krantz, 2009; Linderman & Steward, 1999; Rossignol, Rossignol, James, Melnyk, & Mumper, 2007).

The important question is, does this design provide convincing proof that the treatment caused the improvement in the variable(s) being measured? The answer is unambiguous: This basic design never permits confirmation of cause and effect between the treatment and positive changes in the dependent measures (e.g., autism symptomology; Drew, Hardman, & Hosp, 2008; Gay, Mills, & Airasian, 2009). And that was true in the two examples given above. In neither study could the prepost test design offer adequate proof that the treatments work.

The weakness of this design (to demonstrate causal relationships) relates to its inability to minimize “internal validity” threats.  The internal validity of a research study refers to the level of confidence in believing that changes in the variables being measured are due to the treatment protocol being used. If the research study is designed to eliminate any explanation other than the treatment changing what is being measured, then that study has strong internal validity. On the other hand, if the research study is designed in a way that allows explanations other than the treatment variable to possibly be influencing what is being measured, then that study will have weak internal validity, and the conclusion must be that the treatment may not be the only reason for the change in the dependent measurements.  If there is an assumption that variables other than the treatment could have produced the changes in what is measured, one must conclude that the treatment probably did not cause the changes.

The pre-post design is fatally flawed with respect to internal validity.  For example, if participants improve from pre-test to post-test, the improvement could be due to as simple an explanation as the maturation of the participants (physically or psychologically) over the course of the experiment. Consider a research project done over the course of a year with preschoolers with autism. An improvement in assessment from pre-test to post-test could be due simply to the natural maturation of the participants, rather than influence of the treatment.

Another possible threat to believing that a treatment caused any positive changes relates to participants who were chosen on the basis of extremely low scores (or extremely low performance) on the variable(s) being measured in the pre-test. Generally, extremely low scores will often improve, and extremely high scores will often decline, given repeated assessments, just because they are so extreme.  Thus, any study that involves participants chosen because they scored very low or very high on the dependent measures and that uses a pretest-posttest design is open to this particular threat, making its conclusions open to question.

The one-group pre-post design is flawed by several additional internal validity threats not discussed here. The reality is that any attempt to demonstrate the effectiveness of a treatment by using a pre-test on one group of participants, then applying a treatment, followed by a reassessment of the variables being tracked, will always be open to skepticism of linking improvement to treatment. Because it is open to internal validity threats, this type of design will never allow strong confidence in the belief of a cause and effect connection between treatment and improvement.

All research is not equal in quality. Just because a research study has been conducted and shows positive changes in some aspects of autism does not necessarily mean that the treatment was responsible for those changes. Parents and other consumers must critique any research study that purports to show a positive effect of a treatment, and try to determine if the positive changes could be due to other explanations or could only be due to the treatment.

Since autism is said by some to be a “fad magnet” (e.g., Jacobson, Foxx, & Mulick, 2005), parents, caregivers, and service providers should activate their “baloney detectors” (Sagan, 1999) to avoid adopting treatments that have no proof of effectiveness. That will also help them find and embrace treatments for which there is a body of well-designed research supporting a cause-and-effect relationship. Research in autism treatments that purportedly shows evidence of effectiveness but that utilize only pre-post design studies, needs to be viewed with caution and must not be thought of as producing valid conclusions that allow consumers and caregivers to believe that the treatment in fact works.

References

Drew, C. J., Hardman, M. L., & Hosp, J. L. (2008). Designing and conducting research in education.  Thousand Oaks, California: Sage Publications, Inc.

Fraenkel, J. R., & Wallen, N. E. (2009). How to Design and Evaluate Research in Education. Seventh edition. New York: McGraw-Hill.

Gay, L. R., Mills, G. E., & Airasian, P. (2009). Educational Research: Competencies for Analysis and Applications, Ninth Edition. Upper Saddle River, NJ: Pearson.

Gutstein, S. E., Burgess, A. F., & Montfort, K. (2007).  Evaluation of the Relationship Development Intervention program. Autism, 11, 397-412.

Jacobson, J. W., Foxx, R. M., & Mulick, J.A. (2005). Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in professional practice. Mahwah, NJ: Lawrence Associates, Inc.

Krantz, S. (2009). Craniosacral therapy: Helping improve brain function. Retrieved March 8, 2010 at http://www.upledger.com/content.asp?id=76&mid=2.

Linderman, T. M., & Steward, K. B. (1999). Sensory integrative-based occupational therapy and functional outcomes in young children with pervasive developmental disorders: A single subject study. American Journal of Occupational Therapy, 53, 207-213.

Rossignol, D. A., & Rossignol, L. W. (2006). Hyperbaric oxygen therapy may improve symptoms in autistic children. Medical Hypotheses, 67, 216-228.

Rossignol, D. A., Rossignol, L. W., James, S. J., Melnyk, S., & Mumper, E. (2007). The effects of hyperbaric oxygen therapy on oxidative stress, inflammation, and symptoms in children with autism: An open-label pilot study. MBC Pediatrics. Retrieved on March 8, 2010 at http://www.biomedcentral.com/1471-2431/7/36.

Sagan, C. (1996). The Demon-Haunted world: Science as a Candle in the Dark. New York, NY: Random House.

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FOCUS ON OAR RESEARCH

Writing Instruction for Children with ASD

Writing effectively can make the difference between a successful student and an unsuccessful student, between the chance to go on to higher education or not. Writing, however, is not a skill that comes naturally to all children and learning to write well can be even more challenging for children with autism spectrum disorders (ASD).

Children with autism spectrum disorders exhibit a wide variety of characteristics that may inhibit their abilities to express themselves in writing. They may have motor/coordination issues, which could affect their handwriting. In addition, literal thinking, lack of abstract ideation, and difficulty imagining possible future events and scenarios could undermine their ability to plan and write an imaginary story for an absent audience. They may also lack organizational skills and the ability to elaborate their thoughts and may be less likely to provide causal explanations and insight into internal states, all elements that can help with writing.

In addition to these characteristics, deficits in self-regulation may also effect the writing abilities of children with ASD. Self-regulation helps writers monitor, assess, and reinforce their writing behaviors without depending on prompts from adults or other skilled writers. However, a child with ASD may have poor self-regulatory abilities while also exhibiting distractibility, decreased attention, adaptability, and persistence to a greater degree than a child diagnosed with a learning disability.

Using SRSD to Teach Writing

OAR-funded researcher Kristie Asaro-Saddler, Ph.D., working with Bruce Saddler, Ph.D., plans to use Self-Regulated Strategy Development (SRSD) to teach children with ASD writing skills. Although SRSD has been found in over 35 empirical studies to be an effective method to teach writing strategies to elementary students with and without disabilities, it has not been studied as an approach for children with ASD.

SRSD was introduced in the 1980s, out of the belief that children with special needs, specifically learning disabilities and behavioral problems, might benefit from an integrated approach to instruction that addresses not only cognitive needs but also affective and behavioral strengths and weaknesses. This approach combines instruction in specific writing strategies with training in self-regulation strategies, such as self-monitoring and self-reinforcement. SRSD instruction is designed to help students learn the components of the writing process, independently manage those components, and develop a positive attitude about themselves and their writing.

The method typically includes several characteristics: First, instruction is individualized based on the student’s particular strengths and needs. Second, strategies and self-regulation procedures are taught explicitly and systematically. Third, while teachers play a facilitative role, students are asked to be active collaborators, thus stressing interactive learning. Fourth, instruction is criterion-based rather than time-based, meaning student progress through the instructional phases is determined by an agreed upon criterion for that phase, as opposed to completing the phase in a prescribed amount of time. Therefore, phases can be repeated as necessary until the goal is met, giving students the time they need to be successful.

The instruction also provides the students with varying levels of support, from modeling to guided practice to independent practice, based on their needs. Finally, generalization, a particularly problematic area for writers with disabilities, is promoted through the teacher and students discussing where else the strategy can be used and how to evaluate success.

The effects of SRSD will be explored on two writing genres commonly taught in elementary schools: story writing and persuasive essays. Although there have been other studies conducted to improve the story writing ability of children with ASD, persuasion has been a genre previously unexplored with this population. The participants will range from grades 2 through 5, and they will differ in personal and academic characteristics. The younger students (Grades 2-3) will learn a story writing strategy, and the older students (grades 4-5) will learn a persuasive essay writing strategy. Students will write stories or essays at pre-intervention, post-intervention, and maintenance to determine whether the effects of learning the story writing or persuasive essay strategy improved their writing in terms of components of a story or persuasive essay, number of words written, and overall holistic quality.

Outcomes and Practical Relevance

The children will be expected to improve their stories and persuasive essays in overall quality, number of elements, and length, with the goal of preparing them for higher education, jobs, and their adult lives generally. Good writing skills are useful, even necessary, across all ranges of our lives. More imperatively in the case of this study, the researchers expect the project to possibly help students improve outcomes in two areas of New York state exams: story writing and persuasive writing.

Finally, the results of this study will help teachers and researchers understand the effectiveness of the strategy for children with a range of characteristics across several grade levels.

Because minimal research has focused on the writing skills of children with ASD, this project represents an important contribution in this area. With the increasing number of students with ASD being included in general education classrooms, the need for evidenced-based interventions for students with ASD, especially in an academic area such as writing, is warranted.

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Salute

Working for More Than Weekends to Make Lives Better

For Christopher and Theresa Waddell, participating in OAR’s RUN FOR AUTISM program is as much about banishing blame and shame from the conversation about autism as it is about raising money for OAR. In fact, eliminating those feelings for families with autism goes hand in hand with OAR’s mission as far as Christopher Waddell is concerned. “Blame and shame are still significant aspects for any kind of mental/neurological health. I believe parents benefit from being open in looking for solutions that will help their families and not hiding themselves. OAR seeks to fund research to improve people’s lives.”

The Waddells, who have a financial planning practice that focuses on eldercare and special needs planning, learned about OAR when they exhibited at the Annual Applied Autism Research and Intervention Conference in 2004. In 2005, Waddell began running for OAR, starting with the Marine Corps Marathon, and he’s put in four more runs for OAR since. “During the marathon, Theresa met me at miles 4, 9, 13, 16, 19, and 26.1. We missed each other at mile 22. I fell in love with her all over again after that day!”

Theresa began running with Christopher by running a couple of miles during the 2007 New York Half Marathon. They ran the Marine Corp 10K together in 2008 and the San Antonio Rock n’ Roll Marathon in 2009. It is a particular honor, Waddell says, to run the Marine Corps Marathon since Theresa and her family were rescued by Marines on the day Saigon fell to the Communists.

The Waddells have three sons, Will, 10, Paul, 8, and Sean, 6. Will and Paul are both on the autism spectrum. “For me, running and helpingin this event is a representation of the challenges that my two oldest sons face as they learn to express themselves through speech and sign language. Personally, significant change is easier than incremental change. I knew to help my family, I needed to be physically stronger, in order to be mentally stronger.”

He wryly admits that, though he takes the running and the fundraising very seriously, his runs are more “epic than athletic. I get passed by people wearing Kermit the Frog and Miss Piggy outfits, jugglers, and people jumping rope.” Still, despite losing ground to the Muppets, Waddell can’t imagine not putting in this effort, one step and one dollar at a time. 

Truthfully, Waddell says, he doesn’t see fundraising as a chore or obligation but as an opportunity for himself and his donors. “I know that giving leads to increased health and happiness for the giver. As such, the runs provide an opportunity for everyone I reach. Many people thank me for giving them the opportunity.”

Waddell mentions a study that he read that posits that providing social support is extremely beneficial to the provider. The provider, writes the study’s authors, experiences "reduced stress and improved health." The authors state that the "sense of meaning, purpose, belonging and mattering" that are acquired during, say, volunteering, leads to increased happiness and decreased depression. The positive effects of providing social support span improvement in both physical and mental health. Most importantly, the study supports the hypothesis that providing social support promotes longevity for the provider.

“The principle of community helps both me and the donors who support me. By my telling everyone I could that I was going to run a marathon, it was easier for me to accomplish it.” He keeps his donors close as he runs by carrying a list of supporters on his runs and reading them often.

Recently, the Waddells decided to donate the proceeds from their annual Casino Night party to OAR, raising over $2,000 during the evening. “We started the party years ago as a casino and white elephant party. At the end of the evening, I’d auction off the white elephants as a way to get my poker chips back from our guests. It’s great to see people and share something of ourselves.”

Waddell never forgets that OAR works every hard to make the lives of his family and so many others better, he says. While he was the volunteer president of the Autism Society of Northern Virginia, he started a program to allow families with children with autism to go to the movies. “Paul had been asked to leave a theatre because he could not stay in his seat. We decided to rent our own theatre, turn down the sound, turn up the lights, and let anyone who had to move or make a sound do so. We filled a 500-seat theatre and have done so every year. That program became a national partnership between the Autism Society and AMC theatres. Families are able to buy their own tickets to a similar movie every month in theatres across the country.”

Though he is justifiably proud of that accomplishment and the other programs he started while president, he notes that many of those programs “made people’s weekends better.” OAR’s work, on the other hand, makes “our lives better.”

Find out more about the Waddells’ financial planning practice, The Waddell Group, on the company’s website, www.WaddellGroup.net.

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