April 1st, 2010 by Kateastrophe
Did you know that April is Autism Awareness Month? And tomorrow is Autism Awareness Day? As of about three years ago I’m VERY aware of it but before then I had zero idea whatsoever. Naturally I knew Autism existed. I knew it affected a lot of people but I didn’t know much more. Then, right around the same time of the same year, two of my VERY best friends both discovered that their little boys were on the Autism Spectrum, and now I’m very, very aware of what it is and how much it can affect a family.
According to Autism Speaks:
“Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not
Otherwise Specified), Asperger’s Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.
Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.
What causes Autism? The simple answer is we don’t know. The vast majority of cases of autism are idiopathic, which means the cause is unknown.The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes. The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors. Timing of exposure during the child’s development (before, during or after birth) may also play a role in the development or final presentation of the disorder.”
One in every 110 children . . . 1 in 70 boys in the US. I have a group of about 10 best girlfriends and between us there are 8 little boys. Two of them are on the spectrum. That’s just too many.
As I’ve spoken with my friends over the years about the challenges with their Autistic sons, I’ve realized that when an Autism diagnosis is given, the world becomes a very scary place for the parents. As I imagine it, the conversation goes a little like this:
“There is something wrong with your child mentally and developmentally. We’re not sure what causes it, we’re not sure how to fix it and we’re sort of aware of how to handle it, but not really. We have a bucket for this illness called the Autism Spectrum and we’ll find a place on here somewhere for your child but it’s not a specific diagnoses, we just sort of . . . wing it and hope for the best IF you can get into the right doctor who can give you the right diagnosis. The wait list to see that doctor is approximately eight million years. We’ll try to get you in sooner.
Your child is probably going to be difficult at home and in social situations, but will look completely normal so no one will understand that there is anything wrong. You may have a hard time taking him out in public without people wondering why you’re such a bad parent who can’t control their child. Most likely he will suffer severely in the developmental area of communication which will frustrate you and your child enormously. Making and keeping friends will be difficult for him . . . and possibly for you.
Your child will probably be insanely strong and quite possibly not have any fear of injury or consequence. In many cases he may not even express pain when he is hurt so you will have no idea. In fact, it’s highly likely that he will attempt to hurt himself in attempt to feel. Because of this, your child will most likely need constant supervision. Hope you don’t need time alone ever again.
Some states offer a lot of help for children with Autism . . . but some don’t. Let’s hope you live in one that does because then you’ll get some therapy and counseling and schools that cater specifically to your childs needs and that will hopefully help them overcome some of their challenges. If you don’t, prepare to pay out the butt for these services or to uproot your entire family to a state that might help.
As for a cure . . . well . . . um . . . see . . . we hope to someday know where it comes from so we can someday try to fix it. So . . . yeah. Good luck!”
Basically, the whole thing is going to suck and be hard and frustrating. And it will last a really, really, really long time.
I have been blessed to be able to spend quite a bit of time with both little boys in my life who are Autistic. They are amazing little people. They have so much love and so much joy but they suffer so much frustration trying to express themselves while (and this is my interpretation so don’t hold me to this) they’re a little trapped in their own brains. They want to communicate their wants and needs. They want to be independent and have all the fun in the world. They want so many things, they just struggle to do so in a normal way.
Their parents are angels from heaven with a level of patience I cannot even fathom. The hours that have been spent researching, studying, waiting for doctors, sitting with therapists, volunteering, crying, praying and begging for help for their children cannot be counted. Despite this fact, they speak often of the guilt they feel because they’re not doing enough or they’re neglecting their other children to help the one with “special needs.” They are overwhelmed by the daunting task of raising this child and devastated knowing the challenges he will face for his entire life and yet they keep hoping and praying and researching and banging on every door and refusing to take “no” for an answer. They are my heroes.
I will be wearing blue tomorrow in honor of Autism Awareness Day and I hope that you will join me. Check out Autism Speaks to find walks in your area or to donate. Hopefully someday, somewhere, someone will have an understanding of where Autism starts, how to prevent it and most importantly how to help the kids who have it live a normal life.
I know I didn’t pay much attention until Autism had a face . . . or two. Maybe it will help you. Here are my beautiful, amazing, wonderful faces. I’ll share them with you.
