The world of autism spectrum disorders is constantly changing. That's why the folks at Seattle Children's Autism Center are find new ways to share what they are learning with parents and caregivers. Toward that end, the Center just launched The Autism Blog, a new blog is designed to be a resource on autism as well as to give parents the opportunity to comment on new information about autism engage with Center experts.
According to Seattle Children's, the blog's intent is to provide information that may be helpful to raising a child with autism and will cover an array of topics from such selecting a summer camp to sibling support to new research findings. In addition, Center experts will share their perspective on the latest news and information about autism.
The latter, hospital officials say, is what sets the Center's blog apart from others about the autism spectrum. The focus on roviding information from a provider's perspective means the the blog's primary contributors are physicians, nurses, psychologists, and family resource staff who are knowledgeable about the diagnosis and the latest in treatments and therapies.
"We know the topic of autism can be a sensitive one and there are many differing opinions surrounding various aspects of this disorder," blog authors wrote on the Seattle Children's website. "Given this, we'll strive to provide several different perspectives so you can form your own opinion. We look forward to your comments and ideas for topics you'd like us to explore."
A taste of the new blog comes from Mendy Minjarez PhD's April 25 entry:
"With Autism Awareness Month in full swing, the launch of the Seattle Children's Autism Center Blog seems quite timely. As a large group of more than 30 autism specialists, we are excited to begin bringing you the latest information, perspectives, opinions, and sometimes controversies in autism and related matters.
It is our hope that this blog can become a respected source of information, but also a constructive and stimulating forum for exchanging ideas and opinions, as there is so much to think about when one is involved in caring for individuals with autism spectrum disorders (ASD). To kick off our first post we thought a brief update on some broad topics related to ASD would be appropriate.
Those of you who are seasoned readers of online information about autism are likely familiar with the current statistics about this disorder. Those of you who are newer to the world of autism may be shocked to find out that recent studies suggest an average of one in 110 children in the United States are diagnosed with an autism spectrum disorder (Kogan et al., 2009). The fact that this study was based on parent report of diagnosis, rather than direct assessment of individuals, does raise some methodological questions. However, these numbers are nonetheless quite concerning, especially when you consider that the prevalence was thought to be one in 500 in the mid-1990s, and before that, four in 10,000.
At this time, the Centers for Disease Control estimates that 730,000 individuals, ages 0-21 are diagnosed with an ASD in the United States. The Autism Society of America estimates that one to 1.5 million Americans are living with this disorder. And right here in Washington, it is estimated by the State Department of Health that 8,000 to 12,000 children are diagnosed with ASD, a number that does not even include individuals over the age of 18.
So How Are We Doing?
So with all these individuals being diagnosed with ASD, how are we doing as a nation, a state, a treatment center and even as individuals in supporting the needs of children, individuals, and families trying to manage this disorder?
There are a few different avenues to highlight. Advances in treatment have been remarkable in the last 10 or more years, but we still have a long way to go in getting these treatments out to the masses. With increasing research support for many treatment models, public service systems such as school districts and state-funded programs are adopting some models, but let's face it, systemic changes tend to move at a snail's pace!
Luckily the autism world has amazing advocacy groups, such as Autism Speaks, the Autism Society of America, the Autism Science Foundation and others that are working tirelessly to support treatment research, improve service programs and delivery, and implement the systemic changes that are ultimately needed to truly deliver appropriate support to those who need it. Stay tuned for future blog posts that delve into these issues in greater detail.
In the last five years, insurance reform for autism has moved into the national spotlight, thanks to initiatives such as Autism Votes (www.autismvotes.org), which is part of Autism Speaks. At this time, 25 states have enacted insurance reform legislation, 13 have current bills endorsed by Autism Speaks, ten have bills pending introduction or endorsement, and only three states are not pursuing any kind of autism insurance reform—we will avoid naming names and assume that those states are working tirelessly to put a bill on the table.
ONLY three states left!
For those of us who have been in the field a while, the momentum of this and other similar movements is impressive. When you consider that children with developmental disabilities were considered "uneducable" as recently as the ‘70s, we've come a long way, baby! Here in Washington State we have had an Autism Speaks endorsed bill, Shayan's law, for quite some time, and are still working on getting it passed. For more info go to www.washingtonautismadvocacy.org/updates.