An oft-quoted African proverb tells us “It takes a village to raise a child.” This concept becomes even more affecting when the child in question has an autism spectrum disorder. In this case, the “villagers” also include doctors, counselors, therapists, other medical professionals, specialists and agency administrators as parents struggle to create the best possible life for their child with autism.
April is Autism Awareness Month and so I am urging all of us—although you may not be personally affected—to use this time to be “a light” to the one in every 68 children in our nation affected by the disorder. According to the Centers for Disease Control and Prevention, more children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined. Furthermore, autism costs our nation more than $238 billion per year and is expected to increase significantly over the next decade. These statistics are sobering and so too are some of the many hot-button issues affecting this segment of our population. Securing adequate funding for support services because children and adults with autism require more specialized and individualized care is a good example of the challenges autism presents to individuals and their families. Then there is the question of early intervention and inclusion as a quality of life indicator.
However, during this Autism Awareness Month, I will like to turn our focus on another aspect of the autism spectrum disorder, awareness. Being aware of the issues presented by autism calls for much more than wearing a ribbon or taking part in a march (although all of these actions are important to the cause). Being aware means sometimes seeing life through someone else’s window. It means seeing, understanding and supporting the needs of parents and families living and caring for a child on the spectrum.
So let’s start by asking ourselves this question: How can I, as a “villager,” show in practical terms more understanding and compassion toward families affected by autism? And then let’s put the action steps into play. So while educators and therapists deal with having the right diagnosis on the spectrum, you as a friend to a mother of an autistic child can offer to baby-sit for a few hours this month to allow her the leisure of sitting in the park alone or going to the hair salon. While we as legislators deal with creating laws, such as the one I have proposed requiring health insurers to provide full coverage for the prevention, early detection, diagnosis and treatment of an autism spectrum disorder, you can become part of the support system for the single father next door caring for, not one but two, children with autism. Why not offer to cook dinner for the family one night this month?
These little acts make a big difference in the lives of people who are faced with a lifetime of caring for a loved one with autism. Therefore, being aware also means understanding that as much as these parents love their family members, it is a test every day. The realities of these challenges are sobering, as indicated in this direct account from a parent of a child with autism:
“When you first hear there’s a possibility your child might have autism, several things go through your mind. First, what did I do wrong? Can it be corrected? Who can help me? Will this be for the rest of both of our lives? In your mind, you’re hoping there will be a cure. Of course, as you become more informed, you start to realize that autism is a developmental disability and will be with you and your loved one for many more years, depending on where they are on the autism spectrum. You become depressed because now you understand your life will NEVER be the same.”
In the New York State Senate, I will continue to advocate for these parents and families with legislation such as the ones I have sponsored allowing therapy dogs to enter public places, and calling for the creation of the New York Autism Spectrum Disorders Treatment, Training and Research Council. But if I have an opportunity to march, I will march. When the situation calls for it, I will proudly wear a ribbon. But I am aware that even a random act of kindness may be just the best medicine and most “aware” thing that I can do this month. I ask you to do the same.
Finally, be reminded that despite the many challenges they face, there are people on the spectrum who have contributed to our lives in the areas of literature, arts, business, science and technology. So during this Autism Awareness Month, instead of only lamenting the trials and travails of this disorder, let us also be aware and celebrate the lessons and blessings those affected bring us each and every day.