It's April so it's Autism Awareness Month. What I wouldn't give to be a person who only has to be aware of autism one month a year!! How wonderful it would be (or would it?) to not be the parent of, the sibling of, the family member of, the friend of , the neighbor of, the church friend of, the schoolmate of a person with autism? To not dwell in the trenches with this perverse condition that makes the world seem upside down so much of the time?
When I think about how dull my life would be without autism I am repelled and intrigued... autism has brought great things and people into my life while bringing some pretty awful things along for the ride. My child is "high functioning" for whatever THAT means but it still means that day to day our lives can be difficult. There are things that on a good day just make my child quirky while on a bad day that same thing can make life downright unbearable for us all. I can't imagine how it feels to be trapped inside of the loud, overwhelming arena that is autism. Though the family lives with it we can always take 2 seconds break for our selves while the person living with autism is always there in it and can not escape.
My son is also considered to have autism spectrum behaviors with a diagnosis of Sensory Integration Dysfunction, Dyspraxia, ADHA, and learning disabilities in reading and memory. His "package" is so different though there are days just as difficult as he struggles to connect his intelligence with his difficulty with output. We worry less about his future as his difficulties are less severe and less impacting of his day to day life but we worry all the same. We worry that his difficulty with reading will paint him as unintelligent. That his frustration with the world as an unpredictable place will send a message that he is difficult. His progress can be excruciatingly slow at times and then leap ahead in an unpredictable manner.
Recently the new figures came out from the CDC.. autism rates are now 1 in 88. ONE in EIGHTY-EIGHT!!!! I am so alarmed at these figures! It terrifies me because it makes me KNOW for sure that statistically we will have more family members with autism in our future. This is NOT a club for which I desire more members! Autism is so complex and so different for every person affected so having one person in your life with autism does not better prepare you for another! I tell people all the time "if you know one person with autism you know ONE person with autism!" We can't pretend for one second that we will ever know exactly what to do for our family member.
After almost 17 years (how ironic that my child with autism was born in April? She's always liked things orderly!) I have days when I feel like I know nothing about autism. Days that are so excruciating to survive that I wonder how I will do it when I am 60, 70 , 80 yrs old, when I am old and frail and she is still young and robust? Then I have days when there are good things due to her autism that keep us entertained and encouraged! Ainsley has amazing talents and devastating deficits. I wonder daily what really goes on inside her brain, what is she thinking, what could she tell me if only she could organize her thoughts and tell me verbally all that is there. Though she is verbal she has great difficulty explaining her thoughts and feelings. We are working on communication methods that may allow her to tell us one day all that she feels and thinks but progress is slow.
Our state is working on making cuts that will limit services to our most vulnerable citizens and I have to ask myself why we can ever think this is ok? Why do we support every other disadvantaged group but so easily turn our back on our disabled citizens? Our system is supposed to be designed to allow every citizen the ability to live and work in their own community and contribute yet the current cuts will send many of these individuals into institutions when the families become exhausted mentally, physically and financially. I wish I had all the words to explain how wrong it is to limit a person's potential because of a label and "lack of funds" all the while watching the enormous amounts of money being spent on things so frivolous you can't even fathom the absurdity.
So Happy Autism Month ... I think.
What is Autism? (from the National Institute of Neurological Disorders and Stroke)
Autism Spectrum disorder (ASD) is a range of complex neurodevelopmental disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotypical patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger Syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.