Archive for February, 2011

Co-Founder Suzanne Wright Honored with 2011 Woman of Distinction Award

February 24, 2011 5 comments

On Wednesday, February 23, Autism Speaks Co-founder Suzanne Wright and Palm Beach Civic Advocate Eileen Burns were presented with the 2011 Woman of Distinction Award at the Breakers Club in Palm Beach Florida.  Click here to read the full article.

Autism in the News – 02.24.11

February 24, 2011 1 comment

Lindt Partners with Autism Speaks for Third Year; Expands Easter Giveback Program (Stratham, N.H.)
Premium Swiss chocolatier, Lindt today announces their partnership with Autism Speaks for a third year to raise funds for the autism cause during the Easter season.  As a cornerstone of the partnership, Lindt will again support the non-profit through donations from sales of the iconic Lindt Gold Bunny.  Additional funds for Autism Speaks will be raised through the second annual Lindt Gold Bunny Celebrity Auction, Lindt Easter e-cards, and a new Lindt Facebook initiative. Read more.

Coping With Autism in New Jersey’s Budget (Daily Finance)
Last year, New Jersey Gov. Chris Christie pledged himself a supporter of autism services. “You have an advocate for your issues in the governor’s office and I am that advocate,” he told members of Autism NJ, a nonprofit that provides services for children and adults with autism spectrum disorders in New Jersey. Read more.

At the Boston Conservatory, autistic students learn from music lessons (
The Boston Conservatory is renowned for its intensive training in the performing arts, but on Saturday mornings, this Fenway institution offers a unique program: providing music lessons to children and young adults with autism. Read more.

Foothill High senior is the picture of victory over autism (Foothill, Nev.)
Foothill High School senior Ben Nelson is a precocious artist who meticulously draws colorful illustrations that look like they came straight out of a Disney-Pixar movie. Read more.

Your comments: Newark airport program helps autistic children cope with air travel (
Five families participated Wednesday in the “Autism Explores” at Newark Airport, The Star-Ledger reported. It’s a program designed to help autistic kids and their families learn to cope with the particular strangeness of air travel today, an environment that often triggers some high levels of discomfort and outbursts in autistic children. New Jersey has one of the highest rates of autism in the U.S., and Sen. Frank Lautenberg (D-N.J.) was instrumental in bringing the program, which has its roots in Philadelphia, to Newark Airport. Read more.

Adults with autism and their families often left without help after high school

February 24, 2011 19 comments

This is a guest blog post by Dr. Paul T. Shattuck. Dr. Shattuck is a national expert on disabilities, specifically autism. He has published a number of articles on the prevalence and course of autism as well as on policies and services for people with autism and their families.

Do the challenges of having an autism spectrum disorder (ASD) and the needs for special supports magically disappear in adolescence? No! But many families are pushed off a cliff when it comes to accessing needed services for their young adults with an ASD.

My team and I used data from a large national survey to look at the use of diagnostic medical services, mental health services, case management, and speech therapy during the first few years after leaving high school. In a report published this month in the Archives of Pediatrics and Adolescent Medicine, we found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management, and 9.1 percent for speech therapy. This compares with higher rates of service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy, and 63.6 percent had a case manager.

We also found that 39.1 percent were completely without all four of these essential supportive services. African-American youths and those from poorer households were at much higher risk for this total lack of services.

I was especially troubled by the low rate of accessing speech therapy. Youths with an ASD are especially vulnerable during this period because of their core challenges with communication and social interaction. Succeeding at a job, at school, or in the community depends on being able to communicate with other people. Speech therapy can help with these issues. But many insurance plans and state programs for vocational support or serving adults with developmental disabilities do not reimburse for speech therapy. Building in speech therapy as an eligible expense in adult-serving programs should be an immediate priority for policy improvement.

Why did I ask these questions? Many people who have, or work with, young people who have special needs already know that services drop off after high school. But there are many people and policy makers who have no clue about how dysfunctional these policies are. This study adds hard facts that can be used to educate and raise awareness about how the current system (mal)functions.

The majority of a typical lifespan is spent in adulthood. Yet the majority of what we know about ASDs is based on a lot of research focusing on very young children. I pursued these questions as part of a broader research mission aimed at understanding how to improve life for people with an ASD and their families across the lifespan. Autism Speaks, the Organization for Autism Research, and the National Institute of Mental Health have generously supported this ambitious agenda. I look forward to giving you more updates in the years ahead as we begin to build a stronger evidence base for helping adults with an ASD and their families have brighter futures.

Here is a link to the Autism Speaks Transition Tool Kit, to serve as a guide to assist families on the journey from adolescence to adulthood.

Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.

Kermit the Frog Was Right: “It’s Not Easy Being Green”

February 23, 2011 3 comments

Autism Speaks and the Association for Professional Behavior Analysts Team Up for a Workshop on Autism Insurance Reform

This post is by Lorri Unumb, Esq., Senior Policy Advisor and Counsel, Autism Speaks.

For several years now, Autism Speaks has kept a map of the United States on our wall and on our Autism Votes website where we track states that have passed autism insurance reform bills.  Our map is color-coded:  Blue is for states that are not pursuing autism insurance reform; yellow is for states that are developing insurance bills; red is for states where autism insurance reform bills have been endorsed by Autism Speaks; and green is for states that have enacted autism insurance reform laws.

We celebrate with great joy the addition of every new green state, of which there are now 23.

But over the course of the last couple of years, we have developed a great appreciation for the fact that passing a new law – becoming a green state – brings with it not only joy, but also major headaches. Passing a law is but the first step toward reform; implementation and enforcement of the new laws can be equally difficult.  A new law on the books will not make adequate networks of participating providers suddenly appear.  A new law will not make appropriate CPT codes and rate structures magically materialize.  Advocates in newly green states face mountains of work and many thorny issues.  In other words, to quote Kermit the Frog, “it’s not that easy being green.”

To assist families, providers, regulators, and others who are working to pass or implement new autism insurance laws, Autism Speaks has partnered with the Association of Professional Behavior Analysts to present a full-day workshop on Health Insurance Coverage of ABA Treatment for Autism Spectrum Disorder.”

This workshop will feature leading experts in the field in two sessions:

  • The morning session is called “Obtaining Health Insurance Coverage of ABA Intervention for Autism” and features Gina Green, PhD, BCBA-D, of the Association of Professional Behavior Analysts; Eric V. Larsson, PhD, BCBA-D, of the Lovaas Institute Midwest; Billy Edwards, MS, BCBA, of Behavioral Innovations; and myself.  This session will provide participants with information, suggested strategies, and supporting resources for advocating for legislation to require health insurance coverage and working with insurance companies to obtain coverage of ABA intervention in individual cases. Topics will include making the case for the efficacy and medical necessity of ABA intervention for autism, the costs and cost savings of insurance coverage, qualifications of ABA providers, the basics of becoming a health insurance provider, working with health plans, and billing.
  • The afternoon session is called “Implementing Autism Insurance Laws” and features Bryan Davey, PhD, BCBA-D, of the Arizona Centers for Comprehensive Education and Life-Skills; Daniel Unumb, Attorney; Susan Butler of the Early Autism Project; as well as Dr. Green and Dr. Edwards.  This session will focus on topics such as appealing denials of coverage, addressing provider reimbursement issues, and working with state insurance officials and others to ensure compliance with mandates. Successes as well as obstacles to successful implementation and strategies for overcoming those obstacles will be discussed from the perspectives of advocates, family members, and providers of ABA treatment.

This exciting workshop will take place on Thursday, March 31, 2011 as a pre-conference event adjoining the first annual conference of the Association for Professional Behavior Analysts.  The workshop (March 31) and the conference (April 1-2) will take place at the Marriot Copley Plaza in Boston, and both are open to the public.  Registration is now open and continues through March 15.  Make plans now to join us for this informative event.

Check out our flyer for more information.  Space is limited, so register today at:

The Void a Therapist Can Leave

February 23, 2011 16 comments

This week on Parenthood, Do Not Sleep with Your Autistic Nephew’s Therapist,’ Adam and Kristina are dealt a huge blow when Gaby, Max’s behavioral therapist, gives notice that she can no longer work with them. Adam and Kristina are unaware at the time why she is leaving, but she is visibly upset.

Adam and Kristina are stirring and unsure what do. They are trying to pick up where Gaby left off, but Max is full-blown meltdown mode and it seems there is little hope in site.

Have you experienced the departure of a therapist that affected your family? How did you handle it?

Please stay tuned this week for even more Parenthood discussion. Watch the full episode here, so you will be ready to participate!

Autism in the News – 02.23.11

February 23, 2011 1 comment

Girl, 7, who drowned in Lawton had struggled to overcome autism (Lawton, Okla.)
Doctors once said Savannah Martin would never talk, but she defied the early diagnosis and started to speak. Then she learned to read. She even tried to learn to swim. Read more.

Autism bill sent to McDonnell (The Franklin News-Post)
Legislation that would require health insurance companies to provide coverage for autism for children between the ages of 2 and 6 now goes to Virginia Gov. Bob McDonnell for his signature. Read more.

Parents lose Supreme Court appeal in vaccine lawsuit (Washington, DC.)
The Supreme Court closed the courthouse door Tuesday to parents who want to sue drugmakers over claims that their children developed autism and other serious health problems from vaccines. The ruling was a stinging defeat for families dissatisfied with how they fared before a special no-fault vaccine court. Read more.

Free Autism seminar in Clark March 2 (Clark, N.J.)
A series of free seminars is being offered to parents and teachers of children with disabilities on effective teaching of social skills. One of the events in the seminar series will be held locally in Clark.  Read more.

School board settles VOA suit (Orlando Business Journal)
At its Feb. 22 meeting, the Orange County School Board settled its lawsuit against Orlando architecture firm VOA Associates Inc. Read more.

Autism Tissue Program Reaches Milestone 100th Publication

February 22, 2011 6 comments

A journal article published this week studying sex-linked hormones in brain is the 100th paper describing results from brain tissue provided by the Autism Tissue Program. Taken together, the 100 papers, all published in peer-reviewed scientific journals, represent a huge advance in our understanding of the brains of individuals with autism.

The first publications were released in 2001 and built on existing evidence of developmental changes in the brain of those with autism.  The increase to 100 papers in 10 years mirrors the growth of the brain tissue resource from about 20 brains at the start to currently over 100 brains from individuals with a clear diagnosis of autism, ranging in age from 3 to 60.  The papers also show the use of a wide range of specialized resources developed by the Autism Tissue Program including MRI, brain tissue biopsies, genetic material from brain tissue and a large permanent brain library of slides all derived from post mortem brains.

The 100th publication is by Valerie Hu, Ph.D. and colleagues at the George Washington University Medical Center titled: ‘Sex hormones in autism: Androgens and estrogens differentially and reciprocally regulate RORA, a novel candidate gene for autism’.  The aim of the research, funded in part by Autism Speaks, was to examine a particular sex-linked candidate gene found throughout the human body, including brain tissue. This line of research could provide some rationale for the fact that four times more males are affected with autism than females. Dr. Hu’s research shows that both male and female hormones have varying and significant effects on the activity of the RORA gene product.  The RORA gene product regulates an enzyme (aromatase) that converts testosterone into estrogen.

This study offers a molecular mechanism for understanding the sex bias towards males by increasing levels of testosterone. This paper is the first report a sex hormone-responsive candidate gene for ASD. RORA is important for the development of a part of the brain called the cerebellum. The cerebellum is involved in controlling some types of movement, but also plays a role in cognitive tasks such as redirecting attention. RORA also serves to protect neurons against inflammation and oxidative stress.

Dr. Hu and colleagues showed that the female hormone estrogen increases the expression of RORA, while the male hormone androgen (dihydrotestosterone) decreases it. Interestingly, the interaction is somewhat circular as RORA regulates the expression of aromatase, an enzyme that converts testosterone to estrogen.  According to Dr. Hu, “We observed in the brains of individuals with autism a link between decreased in activity of RORA and a reduction of aromatase activity. This reduced activity would lead to build up of testosterone and a decrease in estrogen.”

This study provides a molecular explanation for the higher levels of testosterone observed in some individuals with autism. These findings also suggest a mechanism for the male bias in ASD because female brain tissue may benefit from the protective effects of naturally higher levels of estrogen In addition, the estrogen receptor shares some of the same target genes as RORA, thus compensating for RORA deficiency, which the research team has also observed in some individuals with ASD.

Zeroing in on specific gene effects in the brain is one of several research avenues undertaken by scientists that can only be done through the direct examination of human brain tissue. The value of the study of human brain tissue is the interpretation of the data in the context of the current knowledge about autism. Combined with post mortem imaging and genetic analysis scientists can gain a broader and more thorough understanding of ASD.

Scientists studying brain tissue today need to consider disorders that can co-exist with autism. The Autism Tissue Program takes great care to fully document medical conditions of brain donors.  The informatics portal catalogs over sixty disorders or conditions occurring in those with a diagnosis of autism including epilepsy, Fragile X, Tuberous Sclerosis Complex, Duschenne Muscular Dystrophy, Angleman, Rett and Asperger Syndromes and partial duplications or deletions of several chromosomes.

The Autism Tissue Program has emerged as an important resource of not only brain tissue but also as in informational hub of research results from an international group of scientists.  None of this work would be possible without the dedication of the families who chose to donate brain tissue of loved ones to the Autism Tissue Program. To register you or your family in the brain donor program, please visit for information and online registration, or call 877-333-0999 for information or to initiate a brain donation.

Click here to view the full list of 100 papers the Autism Tissue Program has made possible.


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