Inspirational Stories

It had been 12 years and never a lie, not one. How many parents can say that about their child? As Dr. House (from the TV show) would say, “Everybody lies”.  Autistic children were at one time thought incapable of such stealth and critical thought.  I found that was not the truth.  Sometimes it takes a bit longer to learn how, but everybody lies - even those with autism.  It took 12 years before I actually caught my autistic son, Matt, in a lie.

As Christmas approaches I can't help but reflect on the years past and how my son Matt has changed in his own way to embrace the spirit of the season.  Matt is almost 26 years old, so there's plenty to reflect upon.  As I thought about all of our unique experiences I wondered, "Do other parents of autistic children have this much fun?"

I use the word "fun" because looking at it from my point of view it would all make such a great movie, a comedy I think, about learning the true meaning of Christmas.  Don't get me wrong, there were a few years with too much family drama.  Some were budget-breaking extravaganzas, while others were completed on a shoestring financially.  Some were tearful - due to overwhelming joy, and others tearful because they were absolutely  heart-wrenching.  Yet all, every single one, ended with the warmth of a love-filled home, smiles on children's faces, full bellies, and plenty of unforgettable (and sometimes pretty hilarious) memories.

The following was written by my son Matt.  I came across this school project and after reading it (again) I thought, “Wow – this is Matt in his own words”. I thought I would share this with you as it may shed some light on the nature of autism.  These are also things Matt will not discuss verbally unless prompted.

Matt is almost 26 years old and moderately to severely autistic. His major handicaps are in the areas of communication and social interaction. The descriptions of the pages are mine, but the words are Matt’s words. The emotion underlying the words is palpable.  His written words tell more about how he felt about himself and the world around him, about his faults and his dreams, then if he were ask to describe himself verbally.  Writing it seems is a safer outlet than spoken language. 

My editing is minimal. I left in the misspellings and put all the commas and dashes in just as he had them on paper. The comments in parentheses are mine.  Matt wrote this In May of 2001 as part of a school project.

Learning for an autistic child can take quite a curious route. For my son Matt, the simple process of learning to write is one such example. After learning the alphabet (another curious route) words were the next logical step. We taught him his name, address, and the names of family members, but Matt wanted to know more important words - like “train”. Usually a child begins to learn more words of their daily life, like “dog” and “cat” and“house”.  Not so with Matt. Once he understood that letters formed words his attention went to the listing of his favorite items in a group. Whatever he listed also became new drawings and the progression of his writing was intimately tied to his love of art. His love of trains brought with it the need to list every type of car pulled by the engine and paper after paper was filled with the list – “coal car”, “gondola car”, “box car”, etc. He also found weather to be quite fascinating and started writing long lists of weather related phenomena; “tornado” “cyclone”, “hurricane” . . .

When my son, Matt, was a little over year old he would hold up a ball in one hand, extend his arm and turn it this way and that, looking at it from all angles. That was when I knew that Matt would someday be an artist. What I did not know was that he would soon be autistic as well. When the initial symptoms of autism arose it seemed to put Matt’s mind on hold, and in many ways regress. Sensations from light and sound to simple textures became uncomfortable.  He had to deal with the onslaught of his environment and it was overwhelming. These were unsure times – would my son be tortured this way his entire life?  Would he ever be able to communicate with me? I look back now and am amazed at how fast Matt learned to deal with these intensified stimuli.  In dealing with such a change in his perceived environment Matt went through a period of adjustment – the classic autism behaviors arose.  He had regressed so much that I wondered if he had lost his artistic eye.  Had it been lost or had art simply taken a back seat to the emergence of his autism?

We all know that parents don’t get an instruction manual on how to be parents.  We all want to know the secrets on how to raise a child so they can achieve their potential and how to interact with our child that builds confidence and character.  All of us also know that no one goes into parenthood with all the answers - we learn slowly, year by year.  From the pregnancy stage to interacting with the adult child, we all travel a road that leads to the future – to the next generation.  The knowledge we attain is so vast that no book could possibly cover it all.  Yet, when we need help we can search the Internet, pick up a book that specifically covers the topic or ask other parents questions on how they dealt with this or that. We make progress ever forward. It’s never a smooth, uneventful road, but it shouldn’t be a chore - like a dreaded homework assignment.  It should be more like a rocky adventure. It is true what they say, that parenting is the hardest job one will ever have, but also the most rewarding.

Recently I came across a bracelet in a magazine with this quote: “Not all those who wander are lost – J.R.R. Tolkien”.  It has stuck in my mind for days.  I have seen this quote many times before but for some reason this time it really hit home. My first thought was, “That’s right, some are just autistic!”

When Matt was young he used to wander.  It would happen when we were in a group of people such as a family gathering or at Cub Scouts.  If we were outside then Matt would slowly walk to the periphery and circle us.  He kept track of where we were with quick glances out of the corners of his eyes.  If we were indoors, Matt would walk from room to room until he found one void of people, bright lights and noise.  There he would occupy himself with a simple activity such as practicing expressions with his reflection in a window. He was never out of ear shot.  Yes, Matt wandered, but he was not lost.

How do you deal with defiance?  It’s hard enough for a parent to deal with defiance from any child but what about from an autistic child?  I can look back and see that it all could have been handled much better if I had understood the triggers that initiated the “meltdowns”. One specific trigger always resulted in a battle of wills and physical strength. If I had only known then what I know now those battles would have fallen away at a much earlier age. 

Although I learned early that Matt had a prescribed formula in the progression toward a meltdown, it took me years to discover their root cause.  For those of you who don’t know what a meltdown is I would describe it as an escalation of defiance to the degree of def-con 4 (possibly 5) as compared to a typical temper tantrum – which I would rate as only capable of reaching def-con 2.  Regrettably, the cause was not discovered until years later, after Matt had already been through numerous high-level meltdowns.  Imagine my shame when I discovered that I had unknowingly triggered the worst of them.  “How?” you ask.