Tuesday, April 7, 2009

What April Means To Me...

Since April is Autism Awareness month, I am moved to repost some blog entries of the past, sharing our experience. Learn a fact about Autism today, and you can help the awareness campaign!

This, is the face of Autism.... our face....

April is Autism Awareness Month. During this month, you will no doubt begin to notice the news media reaching out for pieces of this disorder to put into their articles and tv segments. The world has come a long way in acknowledging the growing crisis of Autism in America. In 1980, approximately 1 in 10,000 children were diagnosed with Autism.

Autism is a complex neurological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe. -- taken from autismspeaks.org

1 out of 150 children means there are a lot of families coping with Autism. Seven years ago, we didn't know anyone with Autism, and sadly, what I had in my own mind to reference this disorder, was the character that Dustin Hoffman played in the movie Rain Man. Contrary to that character, my other perception of someone that had Autism was ignorantly only imagined as a feeble person loudly making unrecognizable noises and rocking incessantly. I know that I am not alone in these thoughts, because through the years in talking with people about Autism, these were the same frames of reference others had before becoming aware.

Yes, Autism can and does reflect these same images in some individuals with severe forms of this neurological disorder, but there is also a wide spectrum of disorders and other not-so-obvious characteristics of the disease. Other ASDs include Asperger syndrome, Rett syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (usually referred to as PDDNOS).

Our son has come such a long way from where he was when he was diagnosed years ago. We attribute his unbelievable progress from such intense and early interventions. He showed "classic" autism signs in the beginning which ranged from no eye contact, lacking verbal and non-verbal communications, toe walking which required leg and foot braces, obsessive focusing of peculiar items (clocks, doors, vacuums, noises), "self stimming" such as spinning himself in circles, hand and ear flapping, as well as severe sensitivities to sounds, lights, touch and taste. We can't go so far as to say that he is "cured", because there is no cure. But if we could put him on our own scale of 1 to 10, 10 being the most severe, we would have to put him at a 1 or 2 now.

Over the years, we have come to know of and interacted with, families with children that have Autism in the most severe of forms. These parents are angels in disguise. We can't imagine what our lives would have been like without such early intervention. I'm not insinuating that early intervention will always pull a child out of the classic Autistic disabilities, but in many cases it has proven to be very successful in a child's progress. Not all brains are alike - this is not a one-size-fits-all disorder. I think awareness now is helping families much earlier, whereas in the past, so many children were being diagnosed "too late" in the developmental stages where early intervention has the most effect. Experts believe there is a sweet-spot of time in a child's early development where certain skills can be taught and the brain can sort of rewire itself into more typical behaviors when learned through therapies etc.

The great news is that there are so many wonderful ways of helping children with Autism communicate and relate to those around them thanks to the overall heightened awareness of people, and also educators and physicians being called to learn more about it. Studies are being held all over the world to try and figure this disorder out even more. Science has been making some awesome discoveries genetically as well, and people like you are deciding to care enough about it to make a difference in your communities. It's possible, that you can no longer walk through your daily life without knowing someone who is affected by this disorder.

This is a quote taken from D.M. Rosner, author and owner of AutismGear.com that really resonated with me, "If Autism hasn't yet touched your life, it most likely will in some way--in fact, maybe it has already and you didn't even realize it. Maybe that quiet girl who wouldn't look you in the eye was more than simply shy; maybe that screaming boy having a meltdown wasn't really a spoiled child after all....... Maybe it was Autism."


You may search my blog using the word 'Autism' to read more posts...


Molly said...

Andrea, YOU are an angel right along with all those other moms. Thank you for giving this to us to read :)

Jen said...

Your journey has been a long one as God sent you Carter because he knew you and Tom were the best parents for him and you would give him the best chance for a wonderful life. Well written and your words are very enlightening and educating. Thanks for being a shoulder for me the past few months in dealing with our journey and issues with Alex, you are an angel too as Molly said!

Oh, I just love that picture of Carter too!! Precious little freckles!!

Heather said...

Your blog moved me. Thank you for sharing the awareness!!