A Different World—A Mother’s Perspective on Autism

The following blog was submitted by Julie Arnold whose son Jack is served at Grafton’s Winchester campus.  The post was previously published in April 2015.  In recognition of Autism Awareness Month, we wanted to share this unique parental perspective on supporting a child with Autism. 

“I am not different. “ My sixteen-year-old son makes this assertion countless time a day.  Well, to be honest, I’m not sure if it’s a statement or a question.  And I’m not entirely sure how he would define the word different. Despite my son’s autism diagnosis, speech and language impairment and IQ test scores, he is very intelligent. He is highly aware and very sensitive emotionally. But his language skills are very much delayed. For him, having a conversation is tantamount to climbing a mountain. It takes effort and it is exhausting. He saves this energy for topics he finds highly motivating. The concept of being “Different” seems to top that list.

Jack was diagnosed with autism on his second birthday. He had no words, did not point or imitate and he had severe sensory processing issues. The pediatrician was extremely reluctant to diagnosis him that young, telling us that “we don’t typically diagnose autism until the age of three”. That was not an acceptable answer to desperate parents wanting medical confirmation of their terrifying suspicions. When it became clear to him that we were not going to leave without an answer, he said, “Yes, your son has autism. He meets all clinical criteria. Any other questions?”

“Any other questions?” he asked nonchalantly as if he just told us our son had an ear infection that would require a 10-day course of antibiotics. Our lives, our world were changed forever. The journey began (without the help of that particular doctor) to seek treatment for our son, to help him learn to communicate, relate and enjoy our world.

Those were very challenging years but they were also years filled with milestones as Jack slowly learned to form words and link words into fragments and sentences. We constantly reminded Jack that he is our superhero. Nothing was ever taken for granted. Not a single word or a single achievement. We were also blessed that Jack became a loving, cuddly child. He loved to be with his family and his friends.  He loved to please people and follow rules. He was a model student in school. He had many gifts in addition to his challenges: he rode bikes, roller bladed, skied, and surfed.

As the years passed, the developmental and communication gap between Jack and his neuro-typical peers and cousins grew.  We had another son when Jack was 10 and as Gibson grew and developed language, Jack noticed. The summer of Jack’s 13th year, (and with the onset of puberty) he began to have challenging and aggressive behaviors. And our world changed forever. Again.

Jack currently attends Grafton’s Ruth Birch Campus in Winchester, VA. He lives in a group home in the Winchester community and is cared for by an amazing team of Grafton staff. Jack’s journey that brought us to Grafton is a subject for another post, but I will say that he began speaking of not being “different” about the same time that the aggressive behavior began. So is this just Jack’s perseverative speech or something more?

I think there are multiple reasons Jack makes this statement “I am not different”.  He could be referring to autism in general. We had never had “the talk” with him, labeling his condition. Perhaps he is referring to his language delay specifically (why can all of you express yourselves so freely and so easily?).  Maybe he is referring to the onset of his aggression (does this behavior make me a different person?) Or maybe he is referring to the fact that he resembles a man more than a child now. Puberty is confusing and difficult for any child- with or without a developmental disability.

Just as fascinating is the multiple ways in which we can answer. Our first instinct is to say “No! You are not different; we tell him that he is “awesome and amazing”. We give him a list of all the wonderful things that he IS. We tell him that he is just like everyone else in the world. We are all people. Sometimes this does not seem to satisfy him. So sometimes I try to explain that each person in the world is created differently (like snowflakes) but that we are still people with the same rights and we all need to respect each other and live safely together in our world.

We may never know exactly why he repeats this phrase so consistently and so often.  My personal belief, the one that gets me through the very tough days and the very long nights without our son in our home, is that Jack was put on this earth to teach us. To change lives.  He has done it since he was 2 years old. Every one of his very first in-home therapists- students who volunteered their time working with Jack while they were in college- are now speech therapists, occupational therapists, and one young woman has even created her own therapy technique and practice. He has been in 3 of their weddings.

During a hospitalization last year, Jack touched the lives of many young men and women fresh out of college who were forming decisions about which direction their career would go. They go to great lengths to keep in touch and visit him. When Jack and I go out together in the Winchester community, it is quite common for strangers to hear Jack say “I’m not different” then they smile and strike up conversations with us or whisper in my ear that we are doing an amazing job with our son.  As if we are teaching him!  The truth is many times- it’s the other way around.