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.

The Stats

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.

Insurance

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.

At the Center

OK, so before this post becomes too long (I am known for being better at writing book chapters than brief articles), how about a brief local update with a focus on happenings right here at Seattle Children’s Autism Center (SCAC).

Since opening our doors 18 months ago, we have served over 3000 children. In the last week we had more than 250 scheduled appointments. As the largest clinical service provider in Washington, we like other autism centers also have a wait. While we are working on expanding, we do realize it is hard to wait. We appreciate our families and their patience.

Since January 2010 we have hired five new psychologists, a speech pathologist, two pediatric neurologists, two nurses, and a new clinic manager. We are currently providing a range of services, including diagnostic evaluations, ongoing psychotherapy, including mental health and behavioral interventions, medical and medication management, and speech therapy to name a few. Check out our website for more information at www.seattlechildrens.org/clinics-programs/autism-center.

Upcoming Events

In recent and upcoming events, we would like to thank the Seattle St. Patty’s Day Dash, a long-standing Seattle fun run, for donating a portion of their proceeds to our center. This event is always full of fun. Check it out next year if you like to get up early on a Sunday, wear a wacky green outfit, and run in the rain as we Seattleites do!

The Autism Speaks Annual Puget Sound Walk is also scheduled for Sept. 17, 2011, and will benefit the Washington state chapter of Autism Speaks, as well as the national organization (www.walknowforautismspeaks.org/faf/home/default.asp?ievent=447523 to register).

Our own center will also be hosting its annual “Colors of Autism” auction at the Seattle Sheraton on October 8, 2011 (www.seattleautismguild.org).

And for those of you interested in research (or just a good reason for a trip to sunny San Diego), the Annual Meeting for Autism Research (IMFAR) is coming up, May 12-14, 2011 (www.autism-insar.org). Stay tuned for a future blog post featuring highlights from the conference.

To wrap up, we are excited to bring you information on a wide range of topics that have only been briefly addressed in this post. And we welcome your comments and feedback as we go. Stay tuned for our upcoming topics including how to select appropriate summer camps, staying safe during summer activities, and making a smooth transition from preschool to kindergarten. Until then, add us to your favorites and we’ll see you soon.

References

Kogan, M.D., Blumberg, S.J., Schieve, L.A., Boyle, C.A., Perrin, J.M., Ghandour, R.M., Singh, G.K., Strickland, B.B., Trevathan, E. & van Dyck, P.C. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics, 124 (5), 1395-403.

Direct link: http://pediatrics.aappublications.org/cgi/content/full/124/5/1395