Posted by: suekenney | April 2, 2012

World Autism Awareness Day

Today, April 2, 2012, is the fifth annual World Autism Awareness Day.  I probably would not have noticed this with more than a passing glance – but just a few weeks ago, a little boy I know was diagnosed with autism.  And my whole perspective has changed.

I’ve been reading up on autism.  Many of my preconceptions have been blown out of the water.  For instance, “autism” means a whole lot more than just a little boy or girl who won’t make eye contact, doesn’t socialize, and focuses obsessively on just one thing.  That’s what I used to think it meant.  Now I know that “autism” is not one specific condition, it’s a spectrum.  Here’s what the website autismspeaks.org has to say:

Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

Every resource I’ve looked at says that ASD manifests itself differently in every single person.  The little boy I know who was just diagnosed, for example, doesn’t have the speech a 2-1/2-year-old would be expected to have, but he can figure out novel ways to use toys and puzzles; he’s not much of a socializer with other kids, but if he knows you, he will make full eye contact, even exchange kisses, and loves to cuddle with his mom and dad.  Another boy I knew with autism – now in his midteens – could talk very well, did NOT like making eye contact or being touched, and was so obsessed with dinosaurs that at age 5 he could easily distinguish between a stegosaurus and a diplodocus or any other dinosaur you could come up with, knew very well that pterosaurs were NOT dinosaurs, and could pronounce all those crazy long Latin names with astonishing ease.  A third boy, now a young man, manifests only a bit of a social hesitancy; otherwise you’d never guess he’s been diagnosed with Asperger’s; he’s about to get his bachelor’s degree at age 20, and plays divinely on his chosen musical instrument.  A fourth child, whom I don’t know personally but his aunt has told me about him, has some very severe mental and physical issues, but is a whiz on the computer.  All different.

I’ve seen several news items lately on autism, specifically on the fact that the occurence of autism seems to rising at an incredible rate.  There’s a big debate going on in the medical community as to why this is happening, and also on why autism exists at all.  I have no desire to get into all that.  What matters to me is that it DOES exist, and I have to learn how to incorporate that into my worldview.  I need to understand what I can about the autism spectrum so that I know how to relate to those who are on it – not as freaks or as mental cases or as major behavioral problems – but as real people with real needs and real talents, who perhaps think a bit differently than I do, but are just as deserving as anyone of my attention, my compassion, my friendship, my respect.  If I am able, I need to extend a hand to those with ASD, and to their families, to do all I can to encourage them to be all that they can be.

A couple of thoughts to close.  One, Temple Grandin.  She was born in the 1940s with ASD: she didn’t talk until she was 4; she did not make eye contact; she could not socialize with most kids; she couldn’t stand the texture of most foods so she ate only jello and yogurt; she behaved in ways that most people found bizarre and laughable.  Her family was urged to put her in an institution.  But they persevered.  She is now in her 60s, living on her own, a successful businesswoman and author with a PhD.  Anything is possible.

Two, Try Defying Gravity.  This is a blog on WordPress that I have been following for some weeks now.  The woman who writes it has 3 sons, 2 of them with ASD.  She writes with clarity and honesty, and is a passionate voice for those on the spectrum and those who have to care for them.  She never fails to move me with her stories of her sons and her own struggles.  Her blog is well worth reading.  (trydefyinggravity.wordpress.com)

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