Autism Awareness Graduates to Greater Understanding
Autism Awareness Graduates to Greater UnderstandingApril 7, 2016, Marilyn Lord
I think we all start out noticing the surface appearance and outer behaviors of people when we first meet them -- whether that person has a disability or not. I once heard someone advise parents to give extra attention to their disabled children’s clothing and grooming. "It’s hard enough for others to see beneath the surface with our kids," the expert advised, "so don’t make it harder." It’s true that most of us are attracted to, or turned off by, aesthetics. In our self-aware moments, we may even wish we were not so influenced by our culturally trained senses. So, when our awareness moves beyond the outer characteristics of a disability, a certain relief comes in crossing that threshold to a place of understanding.
At one time, my son’s most reflexive way of expressing himself was to pitch something across the room. That one-note communication style left me feeling defeated and not at all informed. Until one day at breakfast when he responded to my frustrated sigh over his spilled yogurt with the immediate launch of his cup -- I had a moment of clarity. I saw for the first time my negativity boomerang right back at me.
I had witnessed an application of physics they didn’t teach me in school. Adam was showing me that the way we act and react affects others around us more than we know -- and leave it to my less-filtered child with autism to point that out.
Acting on Adam’s clue was like deciding to stop pulling an unraveling thread and simply find the place of origin and mend it. I had to recognize that I was the least common denominator to all my experiences so that was the only place to start. I resented it at first. It hardly seemed fair when I wasn’t the one tearing up the house. But, I was the one picking up the broken pieces most of the time, so there was my incentive. I recognized I could not be successful in helping my children manage their own behavior if I, at the core of me, couldn’t maintain an even keel myself.
Just think how inconsistent we are in our emotional expression with typically developing children. When a child is learning to walk and stumbles, he is met with a smile and a "Whoops!". When that same little one is toilet training and leaves an inconvenient puddle, is it an understanding response that we offer? Both behaviors are normal and expected in development, but our responses may vary anyway.
No one likes inconsistency, least of all a child with autism. Traditional parenting often shifts emotionally between approval and disapproval, praise and threats of a timeout. It seemed to me that my special children were looking for something more evolved -- actions that arose from a non-judgmental core. A parent who could see the unwanted thing that was happening as a phase of development, not a feared permanent reality. ABA helped my evolution in responding as much as it helped my children’s, and occupational therapy provided another path for understanding them as well.
I think the field of occupational therapy has helped greatly in decoding behaviors associated with autism. It spotlights how the senses of many of our children are heightened or dulled by an out of balance system. The more time I spent learning from Occupational Therapists (OTs), the more compassion began to replace frustration. For parents, I often recommend the book Sensory Integration and the Child by A. Jean Ayres for the clarity it can bring.
Recently our Director of Clinical Training, Jessica Mitts, told a group of medical professionals at our local children’s hospital: "Children with autism may laugh, cry, and perform a range of unusual behaviors for no apparent reason, but, there’s always a reason." She gave an example of a client who would look in the direction of a passing plane several seconds before anyone else could hear it. Like my son, this young man’s heightened auditory sense meant a gardener doing his job, or a couple having a jovial conversation at the next table, could be agonizing encounters.
Perceptually, my children seemed different in other ways too. I thought many times that they could read my mind. My daughter, Sarah, was a master at finding things I had hidden to avoid breakage or consumption. In his youth, Adam told me countless times: "Mom, look happy!", even when I was "putting a good face on it." I guess I wasn’t fooling him for a second.
It was true. I used to move back and forth between seeing autism or seeing them. Sometimes I felt good when I gazed upon them, and sometimes, often really, I felt bad. If I was that transparent according to their sense of things, then it could explain why Sarah escaped into the happy world of Barney, and Adam spent years determined to prove that magic wands really could create a different world.
Well, I am different now -- but wands didn’t do it. I completely credit my children for being the catalyst for that change. I followed a few clues, looked beneath the surface, and allowed others to help me translate what I was observing. It is a path to understanding that benefits everyone -- on or off the autism spectrum.