Autism: The Truth Rarely Mentioned

Blog 52

Road weary from the ride to Disney and hungrier than I can ever remember being as an adult, our party of six quickly descended upon the closest restaurant we could find near our hotel.  We were fresh off the road, a nearly three hour drive mixed in with the joy of Los Angeles traffic, when we finally sat down at the corner table. I had not been sitting for long when I noticed all twelve of them sitting at the table beside us.  They were noisy, as any large group would be, but it was more than their noise that caught my attention.

The Table of Twelve was familiar to me and, at one time in my life, they had been my people.

I will freely admit I am not quite old but I am not excessively young either.  I am thankfully old enough to be well seasoned and wisened by my years.  I have taken an adventuring path that has not always journeyed me through the easier avenues and, more often than not, I have opted for the road less traveled while keeping an open mind and sharp eyes.  I miss nothing so it didn’t surprise me one bit how quickly my attention was fixed on the Table of Twelve.

Sitting next to my boy and looking at the Table of Twelve, I could feel two worlds colliding without any warning and I could feel my heart rising up in my chest and crawling hard into my throat because life was, without warning, closing in on me a little too tight.  The life that once was was coming face to face with the life that could have been and, at Disney, it was more than I had expected to be faced with.  I was at Disney for goodness sake.  Happiest Place On Earth after all, right?  Although I had planned on fairy dust, smiles and excitement, life is often full of different plans.  The table of twelve was just that sort of unexpected eye opener from my past that causes a minor anxiety attack exactly when your backbone is not stiffened and you are not prepared for conflicting emotions.

I have heard the rumblings far and wide that surmise that autism is new because there are so few autistic adults.  “Where are all the autistic adults then, eh?”…is what some factions ask.  “I do not see them,” they say.  “If I can’t find autistic adults…then autism must be a new phenomena, right?”

My hearts breaks when I hear these rumblings because my other life is proof of how wrong this idea is because I know where the autistic adults are and I know, autism is not new.  The problem is that perhaps those who believe that autism is new…. are not looking in the right places.  I have spent a lot of time there, in the place where they are hidden, and I will tell you it is not always an easy place to go to or to remember.  I tell you that from the deepest place in my heart and I will also tell you with great honesty, I am thankful beyond words that times have changed.

The first day I reported to work, I didn’t understand.  They were just kids and only a few years younger than me and yet they were the residents!  Their ages varied a little bit, girls between the ages of 12 and 16, while I was all of 18 years old.  I understood their ages but what confused me was how normal they looked AND behaved.  They were not very different from me.  Socially awkward perhaps and inappropriate in moments but that was not all that different from me at that age either.  What was entirely different is that they lived in a group home and had been predominantly abandoned by family while I had not.  A few behavior issues mixed in the bunch, a few kids that seizured but, for the most part, just kids…who had been raised, for most of their lives, in an institution and whose family consisted of staff members.  It’s no wonder they were a little different.

You see, for those of you who are youngins, you have to realize that, Once-Upon-A-Time (as the fairy tale storybook intro goes) , parents were absolutely obedient.  In generations prior, they were good little soldiers, do as you’re told adults, and members in good standing of the Clean Plate Club.  Rock solid and staunch in their want to do right.  They did as they were told by the powers that be and they dared not question the black robes and the white coats that provided the foundational corners of their lives.  They never said no, they dared not disagree and they ever so rarely stood up straight and tall in defiance of mainstream because that would be wrong.  And, honestly, it just wasn’t socially acceptable at all to stand up and fight.  It wasn’t respectable.   James Dean was the only Rebel allowed…safely on a movie screen of course but not in real life and actively demonstrating disrespect!

And when doctors advised them to institutionalize children who were differently-abled because it was the best thing to do, parents did what they were told no matter how it broke their hearts.  They simply believed. They were told they would be a harm to their children if they kept them at home, that they would never be able to help such a child.  They were assured these differently-abled children, non-perfect in their development as they were,  would destroy the family unit.

Sitting beside the Table of Twelve with my spectrum kiddo, were ten old school differently abled adults from another generation along with two counselors.  A generation of kiddos raised by the parents who were absolutely good and obedient and did as they were told.  Parents who trusted the powers that be and signed over their kiddos to institutions.  Looking at the table, and trying not to gaze too long, I could see carbon copies of the kiddos from the St. Vincent’s group home of my college years.  I am not sure of all the disabilities sitting at that Table of Twelve but a few of them were familiar enough to me to remember.  Two appeared to have cerebral palsy, one appeared hydrocephalic but most appeared to be developmental delays of varying types.  All seemed very alert, conversational and quite well mannered but there was one woman in particular that caught my eye.  The woman sitting second from the end of the table reminded me immensely of my own spectrum kiddo.

It was not how she looked, it was not how she was dressed because we all know autism is not defined by anything visual.  What caught my attention, because I was close enough to hear her speak, was her tone of voice and the words she spoke.  As she talked to her waitress, I might as well have been listening to my own son speaking.  As I heard her words, I could even hear my own verbal correction formulating inside my head because I am so conditioned to coach him in better choices, verbally and socially.  The waitress asked for her drink order and the woman, appearing to be around 55 or so, gave a perfect request for coke and then her dinner choice without prompting.  What caught my attention was that as soon as the food order was given, the woman hardly took a breath before she said loudly to the waitress, “I want to ask you a question too.”

Just as quickly as I would have responded to my own son’s announcement, the counselor that sat beside her quickly jumped in with, “We are not asking questions right now.  We are only giving our food order.” And it may sound like an unkind correction from the counselor but, having a lot of experience with inappropriate social questions, I get that she needed to preview the question first before letting it hit public air.  It’s a smart thing to do to avoid embarrassing the waitress and to better try to script an appropriate social interaction.

That was the point when I started to fight back the tears. The woman at the Table of Twelve could have been my child had we lived in another generation.

Would I have been strong enough to stand up for my boy in those days?  Would I have fought in a time when fighting was not okay?  It was clear, at least to me, that half of the men and women at that table (all aged 50-ish to 7o-ish) are all part of a lost autism generation.  Perhaps not as readily diagnosed back in their day with autism, it is still what they would be deemed today.  A product of well meaning parents who listened to doctors, professionals and friends, who encouraged them to send their behaviorally and developmentally challenged children to institutions and group homes in the 50’s, 60’s, 70’s and 80’s.  It was a time when only the compliant and  perfect people were kept in public view.

I know it has happened prior to the 50’s and after the 80’s but, more and more, parents are becoming a new generation that is not as respectful, who do not revere doctors to the point of passivity.  Parents are no longer giving a blind-faith pass to doctors to dole out their child’s future in a premature declaration of all they will not be.  Thankfully parents today are seeing that differently-abled is a frame of mind and that different is not less..it is just quirky.  And kids are being given the opportunity to spend more time developing and growing in the loving arms of family with support, nurture and cheerleaders who believe that they CAN do more and be more and rise up to the potential that is at the moment locked in their autistic mystery.

She could have been my child and my boy could have had that life had he not been born in the 90’s and that reality shook me.  He could have been dismissed, overlooked, undervalued.  I didn’t lose it right there at the table.  I took a walk later downstairs at the hotel under the guise of something I left in the car and I lost it quietly on my walk.

I realized I was elated for who my son is and for the generation he lives in that has learned to embrace his differences.  In that same breath, I grieved for all the autistic adults whose opportunity to shine was taken from them the day they were moved from their families and were ushered into institutions or schools who shunned their differences during their childhoods.  I am sorry for the equal value they did not receive.  It was gut wrenching to wonder what the world at large has lost because we did not nurture those children and the wonder that lived quietly in their hearts and imaginations.  How many Carly Fleischmanns and Temple Grandins have we lost along with the wisdom and innovation they could have provided us?  How much heart have we lost by sweeping aside imperfection?

In another time, any one of those adults at the table could have been my son.  In another place and another time, I might not have been strong enough to face down a doctor. In another time, he might have been warehoused rather than applauded.  He might have been beat down rather than raised up.  In another time, he might have grown up to be an autistic adult who was raised by staff rather than nurtured by his mother, father, siblings and a community that holds his quirky brilliance close to their hearts.

My boy is the autistic woman at the table.  The only difference is the date on his birth certificate.

The autistic adults are out there and plentiful.  Autism is not new.  There are plenty of autistic adults but these brave souls have been quietly ushered into a private existence either because they were given over to group homes you do not visit or because the world has been too unkind and too hurtful to them and they have retreated.  I would like to apologize to each and every autistic adult who was not seen by the world as a gift and a blessing and whose brilliance was not celebrated.

I am also deeply thankful for every parent who stands up, who says no thank you to the experts and, despite  bleak official outlooks from well meaning doctors, stand firm and tall in their defiance of the mainstream who cannot see the same potential and the sparkle they glimpse in their child.  Thank you for becoming cheerleaders, advocates and grizzly parents to the autistic kiddos who need you.  Let us never go back to the days of blindly following anyone who is willing to fail the vulnerable children who need them the most.

3 thoughts on “Autism: The Truth Rarely Mentioned

  1. When my daughter was in 2nd grade, I was told that she would have to (some day) find a job as a researcher or something similar because she would never be able to work with people. She hadn’t even been diagnosed yet – wouldn’t be until she was 16 (we live in the back of beyond). She is 23 now. She graduated from college in December, and is living in an apartment with two others. She has had some issues with jobs, but not because of personal interactions, rather because of her black/white view and OCD. but I always told her she could do anything she wanted to. Be anything she chose. I worry about her every day, but I taught her to be independent yet socially interactive. She still comes across as too eager and her mind races far ahead of others, to seemingly non related subjects, but I know she will be okay. Fingers crossed, but she will be okay.

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