April – Autism Awareness Month

April is Autism Awareness Month.  As we see more and more children who have been diagnosed with these spectrum disorders I’m thrilled to see that there are fiction books out there that address the topic, whether it be writing from the perspective of someone who has a spectrum disorder or about how other people cope when someone they love is diagnosed as autistic.  This month I’ll be reviewing some of those selections.  Not every book is clear about what the character’s diagnosis is, so in some cases I’m using my best judgment.  I can promise that there are some great books though and I’m eager to share them with you.  Below is some more information about these spectrum disorders and some links you may want to check out if you’re interested in learning more, or even if you want donate to make a difference.

NB: The designations listed below have changed since this blog post was written.

Autism is a spectrum disorder, meaning that individuals diagnosed with autism can have very different symptoms and abilities.  It is a developmental disorder characterized by delays in communication, socialization, and behavior.  The autism spectrum is composed of three diagnoses:  Autism, Pervasive Developmental Disorder – Not Otherwise Specified (PDD – NOS) and Asperger’s Syndrome.

Asperger’s Syndrome is what many people think of as high-functioning autism.  It is diagnosed when there is no language delay in early childhood but there are difficulties in social interaction and behavior.  People diagnosed with Asperger’s can sometimes show an increased interest in one or two subject areas and want to mainly speak about those things.

PDD-NOS is diagnosed when someone has delays in the three areas named above, but doesn’t meet the criteria for Autism or Asperger’s. People diagnosed as PDD-NOS can have more mild or severe delays that people with autism.

NYU Child Study Center is a great resource with lots of information.  They also have a resources and links page.

Autism Speaks will be especially helpful to families who believe they are facing an autism diagnosis or have just received one. Especially noteworthy are their downloadable, free toolkits for families that are in the first 100 days after receiving a diagnosis. It’s a time that can be very stressful and gut wrenching, so having information at your fingertips from a reputable source can help people cope.

The Center for Disease Control and Prevention has a fact page that includes which type of specialist your doctor should refer you to if there are concerns, as well as contact information for early intervention (who provides free evaluation and assistance for children under age three) and who to contact if your child is over three and you’re in need of help.

I cannot stress enough how much it helps children to be receiving assistance as soon as possible.

Yale School of Medicine has a great questions and answers page.  It includes:  your risk of having a second child with autism if one has been diagnosed, how to help your child communicate if their verbal development is behind and their official stand on the drug secretin.  I will say that as of checking this site 4/15, Yale still has the outdated diagnoses of PDD and Asperger’s Syndrome listed on their site.

If you want to help out further by donating:

Autism Society has a link (check out their stories section while you’re there to get a sense for how widely differing the lives of people with autism can be depending on severity).   The Autism Society tends to be focused on improving the lives of those with autism.

Autism Speaks has many ways for you to get involved.  Autism Speaks tends to be focused on research and treatment.

The Autism Science Foundation also funds research projects.

I would like to thank two of my friends (you know who you are) that are far more well-versed in these issues than I am.  They have helped me find the information I’m passing along to you.