Back to Basics – What is Autism?

Autism is a complex neurobiological disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

Light it Up Blue

Light it up Blue is the official kick-off event for Autism Awareness Month created by Autism Speaks. Buildings across the world will join the event by lighting their office windows or whole buildings blue.  Do you have your blue lightbulbs?  Show your support of families who constantly fight for more services, research, and support by lighting your porch blue.  Such a gesture is such a small way to show you care about what they do every year.

Autism Story #24 – Who is Temple Grandin?

Temple Grandin is a Professor at Colorado State University teaching Animal Science and is the most successful autistic adult in our community right now!"

Temple Grandin is one of the most successful Autism stories I’ve heard and who has changed the Autism Community and paved the way for believing the impossible is possible!

From Temple Grandin’s Website:

“Temple Grandin, Ph.D., is the most accomplished and well-known adult with autism in the world.  Dr. Grandin didn’t talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized.  Most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.  Dr. Grandin has become a prominent author and speaker on the subject of autism because “I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.”

Even though she was considered “weird” in her young school years, she eventually found a mentor, who recognized her interests and abilities. Dr. Grandin later developed her talents into a successful career as a livestock-handling equipment designer, one of very few in the world. She has now designed the facilities in which half the cattle are handled in the United States, consulting for firms such as Burger King, McDonald’s, Swift, and others.

Dr. Grandin presently works as a Professor of Animal Science at Colorado State University. She also speaks around the world on both autism and cattle handling. At every Future Horizons conference on autism, the audience rates her presentation as 10+.

I’ve seen Temple Grandin’s mother speak of her story and it’s inspirational.  Right now she has an HBO Movie about her life.  Check it out! She’s an amazing woman and has such insight not only to her own struggles with Autism but in understanding why autistic children behave the way they do from an autistic perspective.

Autism Story #21 – Autism Legislation

“With nearly 750,000 children on the Autism Spectrum, we need meaningful action now that acknowledges the scope of this problem and allocates the resources necessary to take the fight against Autism to a new level.”  — Autism Speaks

All over the country, states are embracing the immediate need for Autism insurance reform and Autism legislation.

You can visit or forward the link to Autism Votes to see the most updated legislation the government is involved in.

Most recently, the Health Care Reform was a giant step for the Autism Community.  Here are a few pieces of legislation or legislative information that are paving the way for a call of action to the epidemic that is Autism.

“Families caring for a child with autism often have health insurance, but most of these plans explicitly exclude coverage of the treatments their child needs. Since 2007, Autism Speaks has been working with grassroots partners on autism insurance reform in states across the country with the goal of enacting legislation that would end marketplace discrimination on the basis of an autism diagnosis…”  Read More

“Kentucky is the seventeenth state to enact legislation which requires insurance companies to provide coverage of evidence-based, medically necessary autism therapies…”  Read More

“Autism Speaks, the nation’s largest autism science and advocacy organization, today pledged to continue the battle to end insurers’ discrimination against individuals with autism at both the state and federal levels.”  Read More

The CDC report, published in this week’s Morbidity and Mortality Weekly Report (MMWR), states that 1% or 1 in every 110 children has been diagnosed with autism, including 1 in 70 boys. Click to enlargeThis represents a staggering 57 percent increase from 2002 to 2006, and a 600 percent increase in just the past 20 years. Other significant findings include that a broader definition of ASDs does not account for the increase, and while improved and earlier diagnosis accounts for some of the increase, it does not fully account for the increase. Thus, a true increase in the risk for ASD cannot be ruled out. Even though parents typically express concerns about their child’s developmental progress before age three, the average age of diagnoses is not until 53 months, although diagnoses are occurring earlier than found in the 2002 study. The report uses the same methodology that produced the CDC’s 2007 prevalence findings of 1 in 150 children with autism.  Entire Article

Children can’t vote and can’t fight for a cure.  Use your voice to help these children and their families!

Autism Story #13 – How to Help Newly Diagnosed Families

Learn how to share what and who you know about Autism.

I’ve come across, on more than one occassion, the random phone call from a friend or family member who calls and tells me a co-worker or friend of theirs just had a child diagnosed with Autism.  They always ask if the 2-3 degrees of seperation is still appropriate and if they can call me?  Sometimes, they tell me their friends child is more severe than “A” but, that somehow I’m going to have some miraculous advice for these people.

The truth is, I’m so disconnected from these families I’m embarresed.  There are times like this that put me on the defensive and make me feel irritated that my son’s situation is somehow reason to believe that the rest of the autism community is just one big club.  The truth is, like our children who are on a spectrum so are their courses of treatment and theraputic services.  The other irritating part of this unintentional but ignorant act is the assumption that newly diagnosed families need or want saving or leadership.

Most mothers and fathers have such a hard time figuring out how to deal with the blow of losing their child to this neurological brain disorder that the last thing they need or want is a laundry list of “To Do’s” or “Shoulda’s”.  I’m always really careful in my approach to these people who mean well and have good intentions but, the trouble is these families need to find their way on their own.

That’s part of the reason why I blog….When searching for answers on the web in the privacy of your own home, it’s nice to come across a family who’s sharing their story with the world.  It makes accepting the label of “autism” not so lonely.

For Autism Story #13, I’m listing links for must-see websites that will help a newly diagnosed family begin their journey.  It’s like driving down the freeway and seeing a bunch of billboards.  So….for those of you who will come into contact with other newly diagnosed families (and YOU WILL – since every 1:70 boys will be diagnosed with autism later in life) now you have a place to send them.

And remember, your first and only comment to these people should be this…

“I can’t imagine what you’re going through but, when you’re ready to talk, need someone to listen, or need help researching, I’m here to help. I know there are a lot of families going through the same. You’re not alone! EVER!”

http://www.ucdmc.ucdavis.edu/mindinstitute/

http://www.talkaboutcuringautism.org/index.htm

http://www.autism-society.org/site/PageServer

http://www.autism.com/

http://www.templegrandin.com/

http://www.autismspeaks.org/

http://www.generationrescue.org/

http://www.lovaas.com/

http://www.appliedbehaviorconsultants.com/

http://browseinside.harpercollins.com/index.aspx?isbn13=9780060859756

http://www.dds.ca.gov/RC/RCList.cfm (For Californians)

http://www.socialsecurity.gov/pubs/10085.html

http://www.nichcy.org/Laws/IDEA/Pages/Default.aspx

http://www.evidenceofharm.com/

Autism Story #11 – “Welcome to Holland”

The “Welcome to Holland” poem is one of the first things a family is given when they are at the beginning of their journey and have just heard the word Autism for the first time.  I don’t know, having been on this journey for almost 5 years now, if I believe Aiden has been an alternate and less desirable trip but, I do agree it’s been different.  During this month of Autism Awarness, I’m happy to share it with all of you.

Welcome to Holland by Emily Kingsley

"Welcome to Holland" by Emily Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.