World Autism Awareness Day

Today is World Autism Awareness Day. It's a day where people all over the world take time out of their busy lives to focus on a cause that to many of them is all to up close and personal. There will be PSA's with celebrities and global leaders talking about awareness and donating money to help research the causes and treatments of this very heartbreaking and baffling disorder. I decided to do my part and post a blog entry. Those who know me and have followed this blog are no strangers to the fact that two of my children have diagnosis's in the umbrella of disorders known as Autism Spectrum Disorders. Matthew never met the clinical definition as having true Autism but met enough criteria to have Autism Spectrum Disorder given. Carolyn missed the ASD diagnosis by one check mark because the school felt that parallel play was still acceptable at age 3 so she got the diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified instead. It is still on the autism spectrum but not considered as severe. Both children are considered highly functional in terms of language, academic and social skills. As for Andrew..I'm not sure about him. At 18 months he failed a checklist that screens for signs of Autism and he was starting to show a few familiar signs like the delayed language and poor eye contact that the other two have but I contacted the state's Birth to 3 program and he was screened and is now working with a wonderful speech therapist. He has made huge gains and is doing things developmentally and language-wise that Matthew and Carolyn never did at his age. He will be screened just before his 3rd birthday and I will know if he is functioning at age level.

All family matters aside, I wanted to write about the bigger picture when it comes to Autism. There has been so much written about it and featured in the news and there have been certain celebrities who have come out with their personal stories about having a child with Autism. For all the information out there the fact remains that this is a very confusing and unknown disorder. No one knows why children develop it and no one knows why it runs in families, and no one knows the best way to treat it. Google the word autism and thousands of entries pop up. Try "autism cures" and even more sites come up. I will say to all of you...take what you see and read with a huge grain of salt. The truth is that this disorder affects every child differently and not every child diagnosed with Autism will function in the stereotypical way. Yes, there are treatments out there that do work but the truth of the matter is that they are very expensive and time consuming and there is no set standard on how to use them . Sadly, most major insurance companies don't cover any part of Autism treatment. There are a few states that do require the companies to make coverage available but they are the exception. For instance, my insurance company will cover the cost to take Matthew to a psychiatrist and pay for his medication but I had to pay out of pocket to cover the behavior therapy that provided the most improvement for him. I was lucky, he only needed a few hours a week. Depending of the severity of the condition, some parents spend hundreds of thousands of dollars on therapy or special schools for their children. This does not take into account those who put their child on a gluten free casein free diet in hopes that that works. My biggest wish is that enough outcry is heard and insurance companies step forward and cover the basic therapies needed such as speech therapy, physical and occupational therapy, sensory integration, applied behavioral analysis (ABA) and respite care.

I will end this post with a list of things parents of children with Autism Spectrum Disorders want you to know.

1. Please don't feel sorry for us. We love our children just like you do. We are no more different than those parents of children with other chronic conditions like diabetes or developmental disabilities like Down's Syndrome or Cerebral Palsy.

2. Please don't pass judgement when our child acts up in a public place. Our children look just like any other child so what looks like a bratty temper tantrum could easily be a meltdown due to over stimulation or disruption in routine. We have enough to worry about without being on the receiving end of dirty looks or offhand comments about our parenting skills.

3. Please invite us and our children over for play dates. It might be a little more challenging and take more planning but we will let you know what you should do. You will also be giving your child a unique learning experience. Please don't take it personally if we turn down birthday party invitations or play dates in crowded noisy places.

4. Please teach your children to treat others with kindness and respect. Children with ASD's, especially those with Asperger's are very venerable to being picked on and teased because of their odd ways or obsessions and fixations with objects. They have enough of a hard time trying to figure out the complex social situations during the school day without the stress of being physically or mentally abused.

5. Please share with us your child's accomplishments. No, we are not going to feel bad listening to you tell us about your child's latest and greatest thing. We are all parents and discussion of our children is a given. Please be just as happy for us when we discuss our child's accomplishments or setbacks even if it doesn't sound like that much of a big deal. Don't be too surprised if we have not idea what the current watercooler topic is. Most of us don't have the extra time to devote to popular TV programs.