Dr. Chris’ Autism Journal

One of the most difficult things facing families is what to do every year when summer comes!

Here are some useful sights to help you with the process:

1) This article gives practical advice for finding a summer program.

2) This article, written by a parent, is extremely helpful and talks about the importance of keeping up home programs over the summer.

3) This blog talks about ESY (Extended School Year) and your legal rights. In fact, this whole blog is about Law & Education and it written by an experienced lawyer - it is well done - I recommend checking it out!

4) Research often shows that children with autism are likely to lose skills when there is treatment is removed - typically developing children do not show as dramatic of a drop in their abilities with breaks in education. This finding has been shown in many studies in which a treatment is shown to be effective and generalizes to the natural environment - but at follow-up - skills are no longer present. Here is an example of a study with these kinds of findings (you may have to to order the original article if you are interested in reading the whole thing).

5) Many parent organizations (e.g. FEAT), clinics (e.g. New Horizons), and even summer camps (e.g. MySummerPrograms) are also available!

6) If you are not able to obtain services for summer or if you are getting limited services and think your child would benefit from more - TeachTown: Basics is an excellent gap-filler for your home or school program. In addition, Animated Speech Company offers software programs suitable for older children needing additional help with language.

Best of luck with your summer programs and stay tuned for tips for going back to school!

Last week, the Simons Foundation website published an article about using digital tools to help children and teens with autism. The article features a plethora of examples of current high tech products and their positive effect within the autism community. Some of the products mentioned in the article, such as TeachTown: Basics or the Behavioral Image (BI) Capture system, were specifically designed to be used with the special needs community. The article also reports that some autistic teens are benefiting from products not specifically designed for the special needs market, such as the SymTrend, a PDA designed to help teens track their school performance, or SecondLife, a web-based virtual reality game.

The whole article can be found here.

If you are a parent and are looking for a great opportunity to get involved in autism research, you should check out IAN, the Interactive Autism Network.  IAN was established in January 2006 at Kennedy Krieger Institute and is funded by a grant from Autism Speaks. IAN’s goal is to facilitate research that will lead to advancements in the prevention, treatment, and cure of autism spectrum disorders.  Joining IAN will help you better understand the research process, help you keep up with some of the latest and most cutting-edge research findings, better understand the value of research, and even influence the direction future research.

What is IAN Research?

IAN Research allows parents of children diagnosed with an Autism Spectrum Disorder (ASD) to participate in research over the Internet. Parents provide information about their child’s diagnosis, behavior, family, environment, and services received. Parents may also report on their child’s progress over time.

Who can participate in IAN Research?

To register and answer research questions in IAN Research, you must live in the United States and be a biological or adoptive parent of a child under the age of 18 who is diagnosed professionally with one of the following disorders:

• Autism Spectrum Disorder (ASD)
• Autism
• Asperger Syndrome
• Autistic Disorder
• Pervasive Developmental Disorder (PDD)
• Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
• Childhood Disintegrative Disorder (CDD)

The child should not have a diagnosis of Rett Syndrome.

What are the benefits of joining?

You will be able to participate in important research on ASDs. IAN will provide tools that help you monitor your child’s progress over time and explore how your child is similar to (or different than) other children affected by this disorder.

 NEW YORK, NY (Dec 12, 2007) – Autism Speaks, the nation’s leading autism advocacy organization, today announced its Autism Treatment Network (ATN) would triple in size, expanding from five sites to fifteen sites across the United States and Canada. The ATN is a group of hospitals and medical centers dedicated to improving medical care for children and adolescents with autism spectrum disorder (ASD) and to standardizing the care those individuals receive.

The ATN’s multi-disciplinary approach includes collaboration among specialists in areas including, but not limited to, neurology, developmental pediatrics, child psychiatry, psychology, gastroenterology, genetics, metabolic disorders, and sleep disorders. The network aims to develop common clinical standards for medical care for individuals with ASD and to increase the pool of autism medical specialists through trainee mentorship and outreach to community-based physicians. As part of this effort, families receiving care at the sites can participate in a data registry that tracks children and adolescents receiving ongoing care at participating sites. The information in the database is a crucial part of developing the evidence to create and substantiate these clinical consensus standards.

“It is imperative that all children, no matter where they live, have access to excellent, evidence-based medicine,” said Autism Speaks President Mark Roithmayr. “The continuing expansion and funding of the ATN is a significant step in that direction.”

“This dramatic expansion of the Autism Treatment Network provides real opportunity to improve the quality of health care that children and youth with autism receive, and for more children to receive that care,” said Dr. James Perrin, Director, Clinical Coordinating Center, ATN, and Director, General Pediatrics, Massachusetts General Hospital for Children. “Developing common standards of medical care across fifteen sites will allow us to get answers to the questions parents ask about their children’s care much more quickly.”

The participating ATN sites are: University of Arkansas and Arkansas Children’s Hospital (Little Rock, AR); Kaiser Permanente Medical Care Program Northern California (San Jose, CA); University of Colorado Denver, School of Medicine and The Children’s Hospital (Denver, CO); Kennedy Krieger Institute and Marcus Institute (Baltimore, MD/Atlanta, GA); LADDERS/Mass General Hospital (Boston, MA); University of Missouri (Columbia, MO); Columbia University Medical Center (New York, NY); University of Rochester (Rochester, NY); Cincinnati Children’s Hospital Medical Center (Cincinnati, OH); Bloorview Kids Rehab, Surrey Place Centre and The Hospital for Sick Children (Toronto, ON, Canada); Oregon Health & Science University (Portland, OR); University of Pittsburgh (Pittsburgh, PA); Vanderbilt University Medical School (Nashville, TN); Baylor College of Medicine (Houston, TX); University of Washington (Seattle, WA).

The ATN began as a collaboration between the Northwest Autism Foundation in Oregon and Massachusetts General Hospital for Children in Boston. In 2005, the network was established with five founding sites that came together to establish multi-disciplinary practices for the evaluation and treatment of the underlying medical conditions associated with ASD. These sites currently provide services to approximately 2,000 new cases of ASD each year, and all have taken critical steps to broaden the services available to all children in these centers. The Autism Treatment Network merged with Cure Autism Now in 2006. In February 2007, Cure Autism Now merged with Autism Speaks.

To find out more about the Autism Treatment Network, or to get connected to a site in your area, visit www.autismspeaks.org/science/programs/atn/index.php or email: atn@autismspeaks.org.

The above article is reprinted with permission and can be found in its entirety at http://www.autismspeaks.org/press/atn_network_expanded.php

It’s time again for Autism Speaks’ annual “Walk Now for Autism” fundraiser in Seattle, WA. In addition to raising money for autism research, the fundraiser’s purpose is to increase awareness about the growing number of individuals being diagnosed with Autism Spectrum Disorders (ASD). The walk in Seattle is taking place on Saturday, October 13th. If you can’t make it to this event, sign up to join one of the many walks taking place in various locations across the country, as well as in Canada and the United Kingdom.

Hosting these events is Autism Speaks, the nation’s largest non-profit organization devoted to helping the autistic community. In 2006 alone, Autism Speaks raised over $33 million dollars and committed $25 million to scientific research that helped fund multiple projects, including innovative research studies that could potentially advance autism treatment and therapies.

The “Walk Now for Autism” fundraiser is Autism Speaks’ signature fundraising and awareness event. Families and friends of those affected with Autism Spectrum Disorders are the primary participants, in addition to numerous volunteers that make this event possible. It’s not necessary to have a child with autism or work for an autism research organization to join the fun. Everyone is welcome to participate in the walk or even create their own fundraising team. Help spread autism awareness, while raising money for further research.

For more information, check out the following links:

Click Here for a list of locations and dates for the various walks!

Click Here ^{to join TEACHTOWN’s team for the Seattle Walk on October 13th}

^{Click Here to obtain details for the upcoming Seattle Walk}