Focus on Autism Spectrum Disorders: Understanding the Role of Stress and Anxiety in Social Competence

This April, during Autism Awareness month, Lesley University's Severe Disabilities program will host experts in the field of autism to discuss stress, anxiety and social competence as part of the Focus on Autism Spectrum Disorders (ASD) Speaker Series. 100% of the proceeds for this event will support Massachusetts General Hospital's Youthcare program. The event, dubbed Understanding the Role of Stress and Anxiety in Social Competence, will be held April 9 from 8-5 PM in the University Hall Amphitheatre, 1815 Massachusetts Avenue, Cambridge, MA.

Currently, 1 in 110 children (1 in 70 boys) are identified as having an ASD, and according to AutismSpeaks, the prevalence of ASD is expected to increase between 10-17% annually. Massachusetts alone experienced a 1119% increase in the number of students ages 3-21 receiving special education services between 1999-2009 (U.S. Department of Education IDEA Data). The burden of responsibility for educating students with autism falls entirely on local education agencies and partners - those who provide services for students with ASD - whose budgets we know are already constrained (and usually highly criticized) - as well as families, who do not always have access to much-needed services or training. Despite the staggering increase, still only a handful of states require an endorsement for working with students with ASD.

The Focus on Autism Spectrum Disorders Speaker Series is the result of my initiative to call for training beyond teacher licensure for those who work with students with ASD. My work as a classroom teacher, a consultant and now a university professor has led me to believe that training for those who work with children with ASD must go beyond standard teacher licensure. This is an area of specialty that cannot be covered to the extent necessary in teacher licensure programs, given the appropriate focus on the general curriculum and the resulting (vast) information that must be included.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, a second initiative is the commitment to provide low-cost professional development for anyone working/living with an individual with ASD. This supports the idea that training should be accessible and affordable if we are to adequately respond to the rising need for trained professionals in the area of ASD.

Lastly, a third initiative is to support our non-profit community partners, who support families and professionals outside of school settings. In my view this sets a good example for the pre- and in-service teachers that leave the Severe Disabilities program. As a result, for the series are charity events for a non-profit, with 100% of proceeds going to support the organization. Last year, a major effort to support the Asperger's Association of New England resulted in over 10k in fundraising dollars for the organization.

These events would not be possible without the kind assistance of the presenters - all experts who have made a significant contribution to the field. All of the presenters agree to donate their time in support of the cause and the identified organization. This year, experts will include:

• Dr. Matthew S. Goodwin, Director of Clinical Research at the Massachusetts Institute for Technology (MIT) Media Lab; Associate Director of research at the Groden Center, an institute for autism spectrum disorders in Providence, RI. He is Co-Chair of the Autism Speaks-Innovative Technology for Autism Initiative, has an Adjunct Associate Research scientist appointment in the Department of Psychiatry and Human Behavior at Brown University, and is an adjunct assistant professor in the Department of Psychology at the University of Rhode Island. Dr. Goodwin has over 15 years of research and clinical experience working with the full spectrum of children and adults with ASD, and extensive experience developing and evaluating innovative technologies for behavioral assessment, including telemetric physiological monitors, accelerometry sensors, and digital video/facial recognition systems.


• Nomi Kaim , an a young adult with Asperger Syndrome and a volunteer at the Asperger's Association of New England (AANE) in Watertown, MA. She was diagnosed in 2004 at the age of 20. Nomi has spoken about her experiences with AS at conferences, seminars, workshops, schools, and universities, to audiences ranging from children to professionals. Last summer (2010) she presented to teens in YouthCare's summer Transitions program. Her articles and interviews have appeared in the AANE Journal, Autism Spectrum News, the Boston Globe, the New York Times, and National Public Radio. Nomi enjoys writing, copy editing, and exploring the brain (figuratively speaking).


• Dr. Karen Levine , Developmental Psychologist in private practice in Lexington, MA. An Instructor at Harvard Medical School, Dr. Levine was co-founder and co-director of the Boston Children's Hospital Autism program and the Building Blocks Specialty Service Provider Program of Northeast ARC. She served as Clinical Director of the Autism Program at Cambridge Health Alliance in Massachusetts. She has written numerous articles and book chapters and is a frequent regional and national presenter to parent and professional groups on topics related especially to social emotional development of children with autism and other developmental disabilities. Dr. Levine is the co-author, with Noami Chedd, of the 2007 book Replays: Using Play to Enhance Emotional And Behavioral Development for Children With Autism Spectrum Disorders. Dr. Levine is the recipient of the Federation for Children with Special Needs Founders Award 2010, the Boston Institute for the Development of Infants and Parents Award for Excellence in 2000, and the William's Syndrome National Education Award in 1994.


• Elsa Abele, MS CCC/SLP, is a Speech-Language Pathologist who recently retired as Clinical Assistant Professor at Boston University, Sargent College of Health and Rehabilitation Services. Her specialty is child language disorders with a specialty in pragmatic language. She worked with young adolescents in the Burlington, Massachusetts public school system for sixteen years. She currently consults and conducts workshops on topics concerning the inclusion of special needs students in regular classroom settings with special emphasis on children with pragmatic language deficits that interfere with successful social communication. She leads training for professionals and parents in pragmatic group instruction and is a renowned speaker and consultant. Ms. Abele is a member of the American Speech-Language Hearing Association, and its special interest division, the Division of Language Learning and Education. She is a member of the Greater Boston Reading Council of the International Reading Association and a member of the Asperger's Association of New England.


• Dr. Laurence Hirshberg, Director of The NeuroDevelopment Center in Providence, RI. Dr. Hirshberg is a licensed clinical psychologist. He serves on the faculty of the Department of Psychiatry and Human Behavior of the Brown University Medical School as Clinical Assistant Professor. Dr. Hirshberg has specialized in neurodevelopmental disorders for over 15 years and consults and trains educators and clinicians across New England. Dr. Hirshberg is conducting an investigation of quantitative EEG markers of autistic spectrum disorders in collaboration with scientists from the New York University Brain Research Center, among other areas of research. He has published and presented in many areas of clinical psychology and child development.

Thank you in advance to all that make these events a success, in particular the participating reserachers and experts. This is a wonderful example of the power of community and collaboration.

All Eyes on Massachusetts

Massachusetts is home to the Nation’s only remaining residential special education school to utilize aversive therapy, a very controversial application of behavioral methodology, on individuals with disabilities. The use of this practice on students with disabilities has been a critical issue in this state for over 25 years, with professionals in special education, psychology, human rights advocates, attorneys, parents and students themselves arguing over the question of its continued use in Massachusetts.

This practice is employed at The Judge Rotenberg Center (JRC) in Canton, Massachusetts, formerly known as The Behavior Research Institute, which was founded in Rhode Island in 1971 by Dr. Matthew Israel. Israel trained with B.F. Skinner, an American psychologist often credited as an original pioneer of behavioral science. JRC employs the use of aversive therapy, primarily electric skin shock, as a behavioral methodology to "treat" and discipline residents of the school. Other documented use of aversives at the school have included noxious substances, white noise, seclusion, restraint, pinching, spanking, muscle squeezes.

For years, the Judge Rotenberg Center has justified the use of aversive behavioral methods to discipline students with disabilities despite sharp criticism from colleagues in the field by contending that it is the last resort for the many residents of the school, many of whom are considered to have severe disabilities, and have been either rejected or dismissed by other schools. JRC employs this practice on the basis that the students - and as a result of being rejected by other educational establishments, their families - have no remaining options. JRC has a zero rejection and expulsion policy and claims the use of aversive therapy is the only answer for this population of students.

The use of aversive therapy at the Judge Rotenberg Center has been an issue before the Massachusetts Legislature and for numerous other agencies, according to their website, for many years, including attempts to shut JRC’s doors. The most recent hearings were held in 2009 before the Joint Legislative Committee on Children, Families and Persons with Disabilities. The last bills, in 2009, proposed to ban or impose significant restrictions on the use of aversive therapy for individuals with disabilities; as the previous years, JRC was allowed to continue the practice.

It is difficult to understand how the both the Massachusetts Legislature and JRC can continue to justify JRC's methodologies by their population alone, especially given that every other state in the nation, who clearly are also home to students with similar challenges, do not engage in - but rather, renounce - the use of aversive therapy. The field has shifted to the use of Positive Behavioral Support (PBS) and the use of aversive therapy is no longer considered ethical or humane. In fact, Massachusetts has stricter regulations enforcing the rights of both incarcerated individuals and animals than students with disabilities.

In 2007, JRC attracted much unwanted attention when a report from the Massachusetts Department of Early Education and Care detailed an incident in which two of the school’s residents were shocked upwards of 75 and 28 times, both requiring emergency medical attention, the result of a prank phone call from a former resident of the school. According to reports, JRC refused to cooperate in the subsequent investigation, destroying video evidence of the administration of the aversive procedures, despite being ordered to turn it over to the State Police. This incident brought increased concern and renewed attention to administrative protocol and oversight for the use of aversive therapy, and poses the question of whether staff at the school are adequately trained to administer the practice and in turn whether the State is in a position to oversee it.

The Massachusetts Legislature and the Department of Elementary and Secondary Education should seriously consider the appropriateness of such a practice given shifts in the field of Special Education over the past 25 years, the mandate of the Individuals with Disabilities Education Act for the utilization of evidence-based practice; the lack of training/qualifications of individuals at JRC to administer aversive therapy, and the challenges of oversight of the practice by State agencies, due to staffing, training and administrative issues.

However, where Massachusetts has failed, perhaps the Federal Government will prevail: last year, the United States Department of Justice (DOJ) commenced an investigation of the Canton, MA based JRC, to consider allegations by Mental Disability Rights International (MDRI) that the school's practice violates the United Nations Convention against Torture.

Stay tuned.

References

186 General Court of the Commonwealth of Massachusetts. (2004). C. 319 s. 1.

Gonnerman, Jennifer (2007). School of shock. Mother Jones Magazine. Retrieved 1/2/11 from http://www.motherjones.com/news/feature/2007/09/school_of_shock.html

Israel, Matthew. (nd). History of JRC. Retrieved 1/2/11 from http://www.judgerc.org/history.html.%20

Massachusetts Department of Early Education and Care. (2007). Investigation report (incident #49037). November 1, 2007.

New York State Education Department. (2006) Observations and Findings of Out-of-State Program Visitation Judge Rotenberg Educational Center. June 9, 2006.

Wen, Patricia. (2008) Report says shock tapes destroyed against order. The Boston Globe. January 18, 2008.

Wen, Patricia. (2010) US opens Canton school inquiry: Shock discipline at Rotenberg Center prompts concern. The Boston Globe. February 25, 2010

Finally, A Test for Autism?

MRI Results Show Promise as Biological Diagnostic Measure

December 2, 2010 - Researchers at McLean Hospital and the University of Utah have developed a biologically based test, involving magnetic resonance imaging (MRI), to test for autism. MRI is now considered a routine diagnostic test and utilizes magnets and radio waves to generate two and three dimensional scans of the body previously unattainable.

The study, published in the journal Autism Research, was conducted with 30 male subjects previously diagnosed with high functioning autism and 30 typically developing male subjects. In the study, researchers were able to identify the brain scans of those with autism with greater than 90% accuracy.

Lead researchers Nicholas Lange and Julie Lainhart focused efforts on an area of the brain responsible for language and emotion, giving participants a specialized MRI test which revealed specific and identifiable deviations in the brains of those with autism vs. the control group. The study was replicated with similar results on a smaller scale, utilizing 12 male subjects with autism and 7 control subjects.

The results of this study are promising, but should be regarded with caution. A biological diagnostic measure which could identify autism would eradicate the subjectivity now acknowledged in the current diagnostic process, which uses a set of observable characteristics and is not a hard science. However, whether the test can produce the same results with children, in female subjects, and with a broader diagnostic scope remains yet to be seen, and will be critical to the validity and reliability of the measure and its implications for the future.

Focus on Autism Spectrum Disorders: Realizing the Full Potential of Students with Asperger's Syndrome

Autism Spectrum Disorders (ASD) experts came together on Saturday, April 10, 2010 at Lesley University in to provide a day of professional development, training and information on Asperger’s Syndrome (AS) to educators, specialists and parents as a charity benefit for the Asperger's Association of New England (AANE), based in Watertown, MA. This was the fourth event in the speaker series, Focus on Autism Spectrum Disorders, hosted by the Severe Disabilities Graduate Education program at Lesley University. AANE is the largest independent organization for AS in the nation, but does not receive any state or federal funding. The event raised over $10,000 for the organization.

The speaker series was developed to bring awareness to the need for increased training for educators and professionals working with individuals with an autism spectrum disorder. Advocacy is an initiative of the Severe Disabilities program, including support for non-profit community organizations, such as AANE, that in turn support families, professionals and schools, particularly in these challenging economic times. This serves as a model and support to teachers trained in the program, as a way to help them to both identify community agencies who can support their work in the classroom and support families and students out of school time and to recognize the importance of support for these agencies during their professional careers.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, professional development events hosted by the Severe Disabilities program are offered at low-cost, a position adopted from The Center for Special Education at Lesley University.

Participating April 10 conference experts included:

Ellen Korin, M.Ed., author of Asperger Syndrome: An Owner's Manual, and Asperger’s Syndrome: An Owner’s Manual II, which recently received a NAPPA Honors Award from the National Parenting Publications Awards

Dr. Stephen Shore, author of numerous books, including Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome and the critically acclaimed Understanding Autism for Dummies

Dr. Karen Levine, author of Replays: Using Play to Enhance Emotional And Behavioral Development for Children With Autism Spectrum Disorders

Dr. Ross Greene, author of The Explosive Child and Lost at School

All four experts waived all speaking and related fees to support the effort.

Two previous events were held last year in collaboration with AANE, including two sessions on Individualized Education Programs (IEP). A May 5, 2009 session included a panel of parents who have served on teams to develop legally mandated Individualized Education Programs (IEP) for children with ASD. A June 2, 2009 session, jointly created and presented by Jean Stern, director of Children’s Services for AANE, and Elizabeth Stringer Keefe, focused on writing a legally compliant, appropriate IEP for a student with an ASD.

Dania Jekel is Executive Director of AANE, whose mission is to provide quality and individualized information to parents and professionals, through the provision of innovative services such as the first ever conference on Anxiety and Asperger’s Syndrome, and a new LifeMAP program, which provides one-to-one coaching to adults with Asperger’s.

“It is important for us to partner with educational institutions like Lesley University, provider organizations and professionals to strengthen services to those affected by AS,” Jekel said. “In this fiscal time it is particularly important that we expand our revenue sources, which come from families, foundation grants, conferences and memberships, to serve the increased numbers of children and adults diagnosed with AS.”

AANE is responding to the proposed changes to the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5), which proposes to subsume the diagnosis of Asperger's Disorder into a broader category, Autistic Disorder through continued advocacy and a position paper, available here. Ms. Jekel visited the White House last week at President Obama's request with a group of other experts on ASD.

The April 10 event was attended by Jean Stern (AANE), who also provided commentary on the proposed changes to the DSM-5; and staffed by volunteers, including Karen Zimbrich, Associate Director of the Center for Special Education; Christina Chandler, Assistant Director of Academic Advising and Student Services at Lesley University; two alumni of the Severe Disabilities Program, Teresa Robinson and Lexy Goldberger; and current students Kelly Atherton, Elizabeth Donghue, Athena Fazio, Nina Alberg and Emily Lapean.