The Holy Grail Of Autism: Searching For The Ever-Elusive ‘Thing’

I began this venture 14 or 15 months ago, at the time I had no idea what a blog was, who wrote them or why.  I knew blogs existed in the periphery; since that time I have read hundreds, if not thousands of blog posts by many authors.  I am grateful for the insights and information, for both the light-hearted and serious nature of Autism blogs.  I hold in great esteem the parents of Autistic children, and those on the Spectrum themselves, who find the time to share their experiences and opinions.  This little hobby of mine was born with the notion that if I found something interesting or thought-provoking as a parent and advocate, there might be others who felt the same.  The posts about my son Mike. and his journey through life with Autism, is also a commentary about my life, my family members’ lives, and all those he encounters.

Every day I stand in awe of his burgeoning ability to communicate with others; he is verbal and has an expansive vocabulary, but his sharing of those words with others, through various media as well as interpersonal interaction is what grabs my attention and holds my appreciation.  Recently I have been telling his tales of computer prowess thanks to Nassau County PAL‘s Special Needs Unit.  To someone looking through that glass window that is on every college classroom door, it seems like he is any other kid learning a rudimentary electronic skill.  But it’s not; the things he is working on is a combination of his imagination and ideas which he translates to pictures, words, transitions and stories, with the help of the all-powerful Internet.  He takes these ideas incarnate and will transmit them electronically; learning to integrate his thoughts and ideas with methods of communication.  Part of what he is working on is some kind of presentation.  I have no idea what this presentation entails and I don’t want to spoil the spontaneity by knowing its details (aka, peek) before he’s ready to unveil it.  He so looks forward to this class and this project that it literally puts a bounce in his step.  When was the last time your autistic child looked forward to something? Even mundane, drawn-out activities like homework seems to go smoothly, sometimes even voluntarily done early rather than postponed till the last possible waking moment of the day.  No, its not the same as that reaction of the choice to play video games or doing math.  It is so much more than that.

It is a concept that changes an attitude.  It is a wholly visualized goal; one that he knows he can attain, yet attaining it doesn’t diminish it’s inherent value.  It is a window into his mind; how he sees his work, his passion, his worth.  It is a glimpse into what turns that switch on; a veritable springboard toward something greater that he can someday achieve.  That thing that gives him purpose, though short-lived as it is, is precious. That thing that makes us wonder what just happened, and what did you do with my work-averse kid.  It is that thing that we wish was present in every lesson and task, and in every interaction with everyone, ever.  It is that thing we seek: the Holy Grail of Autism: that fleeting, shining moment when we forget all about Autism and just are who we envision ourselves to be; life without the spectre of disability.

Many advocates may argue the term disability, preferring the term ‘differently-abled’ and I understand, but respectfully disagree with, that argument; my son is at a disadvantage when it comes to so many things because of autism, so the term ‘disability’ is not meant to be derogatory.  It is what it is.  But that’s a topic for another day. 

Part of the equation is recognizing that there is indeed a palpable difference between positive reinforcement and everything else.  Years ago, when Mike was in what someone might call a Special Ed class, that had no pedagogical identity, i.e., no idea how to teach Special Needs kids, the psychologist seriously wanted us to allow them to let Mike know that there were consequences to behaviors.  This same psychologist, at one point, also questioned Mike’s diagnosis of Autism/PDD-NOS and asked if he was ‘bipolar’.  My point is, autistic children are not immune to negative attitudes directed toward them, and predictably respond in kind.  Just like everyone else.  Little things like a high-five and verbal recognition of a job well done go a long way towards instilling a positive sense of self in our children.  Like neuro-typical children, many autistic children have the ability to distinguish between different paralinguistic cues, like tone and volume, in the words they hear and interpret.  This helps to re-set their emotional responses during a conversation or interaction; a harsh or angry tone is very likely to elicit a similar response from an autistic child, regardless of the actual words that were spoken.  Therefore a day, or week, or more of praise and positive reinforcement will yield immeasurable benefits in other areas of a child’s life.

Here’s the catch: we as parents have to be able to recognize this.  We have to be able to say, ‘well what do we have here?’ and figure out how to tease every ounce of this spark out of him, so that it touches more aspects of his life.  It is not just ‘he’s having a good day’; it is something we want to replicate as often as possible.  We also have a responsibility, I think, to share these lightbulb moments with others.  Despite the differences from one child to another, as parents we need to live vicariously.  We need the success, and to a lesser degree the failures as well, of others.  We need to see success stories, and learn to adapt them to our own situations.  We know, however, that we can’t possibly bottle that thing, and have it at the ready.  So we learn to enjoy those golden moments and try to share it with others by blogging or posting on Facebook, or other social media.

This is where I come back around to my point about autism bloggers and the phenomenal work being put out there by bloggers.  Wordpress, for example, has so many valuable posts by parents and advocates, not to mention other notable ASD-friendly sites like The Huffington Post, among others.

From this autism parent and blogger to all those others who write, provoke thought and inspire, I say “thank you”.  I look forward to your next post. -Ed

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