CNBNews

John Driscoll | Special to CNBNews

“The Debate between Autism Awareness’ Blue Identity and Autism Acceptance’s Red Identity. (Historically, Autism Awareness has been associated with Blue Lighting and Autism Acceptance with Red.) 

Can I accept something that I am not aware of?

In 1988 President Ronald Reagan issued the first Presidential Proclamation declaring April as Autism Awareness Month. Around that time there was a shift in economic “policies” regarding funding for care for persons with disabilities. Many of the government-operated institutions began to shut down and many school districts began offering greater services for children with disabilities. Programs like “early childhood intervention” (IDEA ‘86) and the “extended school year” (ESY) emerged or became enhanced. Within those programs, we started to see more special needs services for speech therapy, physical therapy, and occupational therapy… Families with disabled children or children with disabilities began to see financial support for at-home services like respite care. As a result of these changes, a greater population of children, and eventually adults, with disabilities began to emerge in areas where they were now exposed to the public. Thus, a need for education and awareness.

As many of you may know, I have a son, Joey, who has been severely impacted by autism. Most of our immediate family and close friends instantly displayed a great sense of understanding and “acceptance” for my son's disorder. However, many people we have met over the years have not been so “accepting”. A handful of people close to us after learning about Joey’s disability told us that the best option for him and us was to commit him to a state-run institution. 

As many of you may not know, my uncle, my mother's brother, was also severely impacted by a disorder. My grandparents placed him in a state-run facility called Princeton Developmental at a young age. He lived there for most of his life, and this was considered normal to my family growing up. 

As a father of someone greatly impacted by autism, my uncle’s placement still saddens me. Today, my grandparents may have had better options, but at the time, his placement was deemed necessary or the only option. Today, most families impacted by a person living with a disability may have options, but not all. Some must utilize facilities like these to keep their family member safe or to provide necessary medical care…But in general, many of us now have options or choices.

(Audience please pay close attention here because what I am about to say, if misinterpreted, may trigger a few of you.)

Yes, I did say that "families impacted by a person living with a disability may have options". This may upset some people, but I did choose my words purposefully as one disability may impact an entire family.

In our case, we often decide on where to vacation, if at all, because of our son’s disability. Our decision on what type of car we purchased was and is decided by our son's disability as Joey’s disability causes involuntary stimming that can often be aggressive, and we can’t have him sitting beside or directly behind the driver if his arms are flailing. What job or career path we follow has been impacted by Joey’s disorder. To many reading this, these things may seem insignificant but they never were to us. To this day, we try and plan almost everything around his care - at times, even our bathroom breaks are scheduled.  

There are many challenges to caring for someone with a disability but sleep deprivation can sometimes make or break a caregiver. Our sleep is often interrupted, not always but often, because we need to be alert enough each night as our adult son may wake up and go wandering. We may find him attempting to eat something he should not be eating, or doing a self-injurious activity, or find him smashing a plate. Yup, I did say smashing a plate. Our adult son finds it fascinating to watch glass break. Our son has broken everything from our dishes to windows to antique ornaments. He cannot help himself, if he sees glass, he smashes it, and then he seems to study the pattern the item broke, and broken pieces that are left behind (Ever see Oppenheimer?)  Our beautiful boy, who we love and would die for, unfortunately, has several dangerous or self-injurious behaviors. In addition to those self-injurious behaviors, he cannot, if hurt by them explain to us that he is in pain. He can’t explain a headache to us or a stomachache…

To our family, this is where the difference between awareness and acceptance lies.

Acceptance is a beautiful thing and if you can argue this article by calling me an ableist or you can write an article with better grammar or write a compelling dissertation depicting awareness as an evil, then you are missing the point and this article was not meant for you.

When my son is in pain, and I cannot figure out why, I do not want to accept that. I want people to be aware of it and hopefully fix it, yes even cure it.

My point is simple. Two things can be true at one time. While the vast majority of families dealing with severe autism no longer need to utilize state run institutions, for some families it is their only option. My heart hurts for them. GOD BLESS THEM!  By the same token, people and families who are impacted by milder cases of autism, or self-identify as an “autistic” or “neurodivergent “(very popular politically correct terms) strongly want to be accepted for their differences. I wish that for you- GOD BLESS. What is missing in today’s society, is the grace to accept the huge gamut between the two. If you are happy with who you are and you can advocate for your own acceptance and live safely on your own, you are not living the same autism that we and many others are.

So, as our son’s guardians, parents, and the people who love him and the people who don’t want him to run out in traffic or run into a door and hurt himself...we will never wish for acceptance.

My wife, my children (including my son who has autism), and I have had to accept that we must bathe our 28-year-old, shave our 28-year-old, and watch in agony as our 28-year-old occasionally hurts himself. We have had to accept that. I will never hear my son say “Dad I love you” or “Dad do I run fast in my new sneakers”, “Dad did you see me make that catch?”, “Dad can you help me make a Homecoming sign so I can ask her out” “Dad I decided to be a cop like you” “Dad my head hurts”-We have had to accept this.

So don’t tell us you know our son or tell some other parent who has given their life for their child to just accept their pain- we already accept enough.

So, light it up as you will, but for us – WE WILL “LIGHT IT UP BLUE”