Autism comes in many shapes and sizes and the impact varies greatly from one end of the spectrum (non-verbal autism) to the other (high-functioning autism). As quoted by Dr. Stephen Shore “if you’ve met one person with autism, you’ve met one person with autism”. There are so many different combinations of behaviors, traits, limitations and strengths and the degree to which they impact an individual can vary greatly. This truly makes each individual with autism extraordinarily unique among their peers. This also means that the challenges for the parents of those children with autism are as unique as the children themselves.
I have been approached by many people in the thirteen years following Shane’s AS diagnosis who are looking for my opinion or feedback. Even though some of these questions pertain to non-verbal autism, I can still relate to the situations that these parents or family are going through. I actually had someone say to me one time that “you wouldn’t know what it’s like raise a child with non-verbal autism because your son is high-functioning” and that bothered me like you wouldn’t believe. Shane was not always the spirited, outgoing young man that he is today. There was a time during his early childhood where he could barely look people in the eye and had absolutely no use for human interaction, even that of his brothers and parents. He was quite a handful at the age of two and that was just the beginning of our dance with autism. By the age of five, it was quite clear to Janine and I that this was more than just a phase and not typical behavior on the part of our son which led us to seek a professional opinion. We started out as his parents and his friends but we would soon learn that Shane needed more – he needed us to be his advocates. Children on the spectrum face their own unique challenges and parents also face their own personal challenge. The challenges of raising a child with autism aren’t bigger or smaller because they are either non-verbal or high-functioning, they are simply unique.
While all parents advocate for their children, advocating for a child that requires customized educational guidelines (IEP: Individual Education Plan) and for other services that they may require takes advocacy to a whole new level. My wife and I had our crash course in autism advocacy back in 2005 when Shane first received his diagnosis and we are seasoned veterans at this point. We have fought many battles on Shane’s behalf over the years to ensure that he was getting the services that he desperately needed and that he was entitled to. There were certain times when it was necessary to intervene and address developmental issues as they arose to keep our son on the path to success. We have encountered teachers and school administrators of all types as our son was promoted from grade to grade and as he graduated from grade school to middle school and eventually high school. While most of these administrators accommodating and professional, there have also been a few that we felt were just going through the motions. I have often remarked to my wife my strong opinion on how difficult a teacher’s job is and the hell that they go through for a paycheck. Although I’m sure that the paycheck is appreciated, most teachers are doing their job because they are passionate and they want to make a difference the lives of children and young adults. There is no one on Earth that appreciates a teacher’s dedication more than a parent of a child with a disability.
Every once in a while, I come across stories in the news that really catch my attention. The story link below is one that I think most parents would appreciate and others can certainly learn from. This is an awesome example of a mother advocating for her son and the outpouring of support for this young man is inspirational to say the least. There are times when being a parent and a friend just isn’t enough. There are moments where it is necessary to be an advocate as well.