Now that Autism Awareness Month is over, I thought I would muse about what autism is here in our Hale. I’ve seen many feel-good pieces of the so-called autistic kid making the three-point basket at the buzzer to win the game…or graduating from college with honors…or painting Rembrandt-quality portraits...or the Sesame Street version of autism, manifested by a new and slap-happy puppet named "Julia". I decided I would jot down a few thoughts about what autism is to me, and so many others.
|All of these are faces of autism...just not the kind I live with...|
- Not being able to use the bathroom for even less than a minute without the terrifying thought that your non-verbal child is escaping, unable to clearly say even his name.
- Feeling your heart pound out of your chest when you realize your child is not in the house, knowing he does not respond to his name when called.
- Describing your child and what he was wearing to mall security.
- Being too afraid to send your child to school because of its inability to provide a 1-1 therapist to ensure not only your child’s education, but his safety throughout the day.
- Knowing your non-verbal child is completely vulnerable to abuse.
- Watching your child scream in pain, unable to tell you where it hurts…or if it hurts.
- Finding your child eating inedible items, such as the plastic from the handlebars of his bike, pieces of wood, the case to his iPad, or particularly disturbing—used kitty litter.
- Opening the car door to let your child out with a body block in place to ensure he can’t bolt into traffic…holding his hand in a death grip when crossing the street.
- Having countless items broken or ruined. Finding iPads in the pool or phones in the toilet is not an uncommon occurrence.
- Realizing your imagination is finite when it comes to the things your child can do that can cause him grave injury or death.
- Fearing your child could fracture his skull when throwing his head back onto the floor when in the throes of a meltdown.
- Seeing your child tremble and shake uncontrollably and worrying he could be developing a seizure disorder.
- Sleeping with your ever-growing child in your bed just so you know where he is and that he is safe.
- Cooking with all sorts of unusual ingredients to accommodate food allergies and sensitivities to nearly every food and spice.
- Having a teenage daughter who dearly loves her brother but at the same time is embarrassed by his behavior and sometimes resents there is little time for her needs.
- Wondering who will care for your child when you are no longer here.
- Isolating…your friends and family are completely unable to understand the reality you live with and you quickly realize most prefer idle chit chat to hearing about an Autism Day-in-the-Life, stories that frequently include poop or a meltdown. You find yourself in close on-line friendships with other autism parents, most of whom you will never meet.
- Frustrating when you hear constantly how it is a psychiatric condition and is genetic...it is a serious medical condition and is epigenetic.
Autism is an all-encompassing, relentless and heartless beast. It is pain and suffering and grief for a lost child with a future lost. It is the realization that in all likelihood, your child will outlive you, and you are not completely sure that is a good thing.
|Gosh, isn't autism just great?|
Autism is not a gift; it is not “differently-abled”; it is not a cute puppet or animated character, and it is certainly not something to be celebrated with blue lights or human interest news stories. As long as the media portrays autism as the quirky genius child who just lacks social skills, there will never be true autism awareness.