It’s Autism Awareness month – and boy – am I aware! I never really understood the significance of all these awareness days and months until I found myself in a position of having to be aware of at least one of them – April.
When my son was about a year old he started to flap his hands over his ears like he was trying to block something out. I knew it wasn’t because of noise but because something was upsetting him. For me, it was a trigger that something could be wrong. Sounds ridiculous right? I know…I’m a helicopter mom, a worry-wart, a hypochondriac, you name it… I thought it. But no matter how much other moms told me not to worry, what they didn’t know, and I couldn’t be completely sure of at that time, is that Autism is in my genes.
Whether or not a genetic link has been identified by researchers, from the day my son was born I had my eyes wide open for signs of things not being quite the way they should be – not just because I knew the latest statistics: 1 in every 110 children is diagnosed with ASD (Autism Spectrum Disorder) in the United States and no one knows why – but because my nephew, Matthew, now 21 years old, has Autism.
Around the time Evan, my son, started to walk, my brother and his wife drove their 21 month old son, Emmet, to see a doctor in Pennsylvania (recommended by my sister – the mother of Matthew) because they too had concerns. I got an email from my brother that night with 3 words: “High Functioning Autism,” otherwise know as Asperger’s Syndrome. My heart sank for them because I saw the long road ahead based on what I experienced as Matthew was growing up. But times had changed and there were now services and therapies available to Emmet that barely existed when my sister was raising her son in the 1990’s.
Then there was one: my little Evan – just 6 months younger than Emmet. If my antennae were up from birth, my radar was now honed in and flashing red. Suddenly the gesture of covering his ears when he was upset took on new meaning and real worry. What if Autism really is genetic?
When Evan was 18 months old my husband and I found ourselves on that same road to Pennsylvania. Evan was too young at this point to be diagnosed with anything concrete, but his lack of eye contact, scanty speech, tantrums, family history, and lack of sleep were enough to get him 4 hours of Early Intervention services per week. At 2 years old, we took Evan back to be reevaluated and were sent home with the same diagnosis as Emmet: Asperger’s.
We went back to the state and were given 11 more hours of Early Intervention services. A dark cloud fell over us at that time, but again, I looked at my boy and told myself the same thing I told my brother when Emmet was diagnosed – a label is just a label – Evan will always be Evan; Emmet will always be Emmet – our sweet, wonderful boys.
Out of 6 children born in my family in one generation, 3 have ASD and all are boys – only 1 boy, Matthew’s older brother, escaped. The statistics in the United States for boys diagnosed with ASD is 1 in every 70. What are the odds that 3 boys in one family alone would get the same diagnosis? We’ve heard everything from vaccines and predisposition, chromosomal abnormalities, having kids later in life, and even “there’s something in the water.” While it would be great to find the cause and “a cure,” until that time – all we have is awareness.
So now I know: Being “aware” as a parent means “trusting your gut.” Don’t go crazy with worry – just keep your eyes open and be aware of the signs and symptoms. So what if you’re wrong and people say you’re crazy – awareness is what matters because getting help EARLY is critical to your child’s prognosis.
Being “aware” as a member of society means to be mindful. A parent struggling with an unruly child in the grocery store may have more on her plate than you know. Offer to lend a hand versus casting a critical eye. Be aware that the kid on the playground wearing his hat and mittens in 70 degree weather (who other kids laugh at) may have ASD. So what if he’s a little quirky? He might also be smart, funny, and incredibly intelligent. Help your child to understand and to be kind.
And keep in mind that “kids on the spectrum” will grow up to be “adults on the spectrum.” You might be asked for directions by someone on the street who seems a little odd at first, but she really just needs your help. Maybe you’ll even bump into Matthew, a fledgling Paleontologist at the Museum of Natural History in Philadelphia giving a tour of the dinosaur exhibits one day. You’ll notice that he’s a little different but he has plenty to say. You just need to listen.
Amy Lerman, Editor of the Motherhood Later e-Zines, is a television news producer and freelance writer. She is the author of several instruction books including The Complete Idiot’s Guide to Critical Reading and The Complete Idiot’s Guide to Family Games. Her poetry has been published in the online literary journal Patchwork. Amy lives in New Jersey with her husband and 3 year old son, Evan.
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