When Caden was diagnosed as being on the autism spectrum in the Fall of 2008 the prevalence of autism in the United States was 1 in 150. Last week the Center for Disease Control released updated prevalence statistics and now it is believed that every 1 in 88 children in the United States have or will be diagnosed with an autism spectrum disorder. In the same press release the CDC also stated that “by comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.” That’s about a 1000 percent increase in the last four decades. Do I have your attention yet?
Trust me I know how easy it is to sit there reading this blog while thinking but that’s not my life, it won’t happen to my child, I don’t need to know any more about autism—that’s just something that’s on the news, in the movies, or that affects other people’s children. I understand that mentality all too well because prior to 2008 I didn’t really know much about autism and frankly I didn’t care to know much more because I didn’t need to. Then autism happened to my world, to my family, to my child.
Autism is a neurobiological disorder that is characterized by language challenges, social interaction difficulties, and repetitive behaviors. Because it is a spectrum disorder children with the diagnosis range from those who are verbal but struggle to be comfortable and engage in social interactions to those children who are partially or completely nonverbal and generally unaware of those around them. Repetitive behaviors may include stims (self-stimulatory behavior) ranging from spinning, toe walking, wrist or arm flapping, picking at one’s skin, pulling one’s hair, twisting clothing, etc. Do you tap your pencil when nervous? Do you twist your hair or pace when you are anxious? Do you bite your fingernails “out of habit?” If so you engage in stimming behavior; ironically the only difference between “normal” and “autism” on this one is frequency of stims and an arbitrary distinction between acceptable (i.e. nail biting) and nonacceptable (i.e. flapping one’s arms or hands). The point of the spectrum—EVERY INDIVIDUAL WITH AUTISM WILL EXHIBIT AUTISM DIFFERENTLY—EVERY PERSON ON THE SPECTRUM IS UNIQUE.
A definition of autism doesn’t begin to describe day to day life with autism though. I read every definition and book that I could find after Caden’s diagnosis and still had no idea what to do for him, with him, or what life would really entail. I still don’t….we live life trial and error and have accepted that we can and will quickly abandon what doesn’t work for Caden and we will pursue like crazy what we think will help him. We research, we listen to other’s experiences, but ultimately we decide what the best decision for Caden and our lives is. Sometimes people agree with us and sometimes they don’t. We’ve fired therapists and doctors and lost friends over our decisions but at the end of the day we know that we are the only ones we can count on to have Caden’s absolute best interests in mind and heart.
We’ve learned that developmental charts aren’t our friend and honestly the word milestone makes me quake. BUT we’ve also learned that Caden does progress, he does hit those “developmental milestones”…he just does it at his own rate. Caden was potty trained right before his 5th birthday and we were thrilled—it was much later than “normal” but earlier than “typical” in the autism world. Caden has recently started imaginative play where he plays with stuffed animals—they talk and act out different interactions—this has been thrilling to watch—it’s a “typical” three year old behavior but it’s a skill that is never taken for granted in the autism world.
We’ve learned that some behaviors that “typical” parents try to discourage in their children are exactly what we celebrate in the autism world. Example: We regularly encourage our daughter to be an individual and not make decisions simply to go along with the crowd. However we were thrilled beyond belief last weekend when Caden said that he wanted a haircut like his friends. Highlights of that statement 1)his friends—he is making friends at school, something we always worried might not happen 2)he wanted a haircut—something we had up until that point always done at home 3)he noticed what other’s hair looked like and wanted that for himself. The thing is once he made up his mind he never looked back. He walked into the hair salon without fear or anxiety. He looked at the hair styling books and made a choice. He walked back and climbed into the chair and sat through the haircut with the most precious, yet serious, look on his face. Afterwards he proudly asked for us to take a picture of his spikes and for the last week he has taken a shower and washed his hair without a fight because he knows that is the only way he can have spikey gel in his hair every morning. He is so proud of himself and it has been apparent every time he walks into a room or walks past a mirror. He made a choice and followed through with it. On a side note, I’m still crying over losing his beautiful beautiful hair but how can you say no to a request made so honestly? And it was a request that we didn’t know if we would ever hear.
The examples of life are endless but hey you can just read past and future blog entries for more on that! My blog is a detailed description of day to day life with Caden…some days the stories are cute and some days they are horrific but they are all just a part of Caden’s tale.
For now I need to go back to a point that I started earlier which is why should you care? You should care because the rates are increasing at an epidemic speed. It doesn’t matter if it is truly an increase or if it is due to better detection. The fact is more children, quite possibly your child or grandchild or niece or nephew, are being diagnosed and sadly resources aren’t widely or affordably available to help these children or their families cope and give these individuals the future they deserve. If you are a teacher, medical professional, first responder, retail or banking employee, or any other professional who deals with the public you need to care about autism rates because you are going to encounter individuals on the spectrum. I can’t give you a cause or reason for autism increases and I can’t tell you that there is a cure but I can tell you that everyone on the spectrum needs and deserves awareness and acceptance. And that folks is why you should care that April is Autism Awareness Month.