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The Easy Button: Not A Staple Of Autism
By Kristi | Published | No Comments
Easy is a word with many applications and implications—some of us like our eggs over easy. A task can be as easy as falling off a horse or easy peasy. A thing of beauty can be seen as easy on the eyes, or a challenging situation can elicit an easy-does-it approach. Even in business and marketing, Staples has its infamous easy button. However, for numerous reasons that word is not as prominent or often associated with autism. Given all the nuances, complexities, and copious amounts of information surrounding the spectrum, it’s not hard to understand why. Some days, that easy button sure would come in handy!
To be clear, “easy” is not necessarily the first thing that springs to mind with regard to parenting either. Neurotypical or neurodivergent, all come with challenges, struggles and sometimes heartache. In retrospect, are there some things I would have done differently? Possibly, but if it had been easy, would I have built the skill set and knowledge that has aided me, pushed me into advocacy without question or taught me the value of lessons learned, sometimes the hard way? I highly doubt it. While I have appreciated the times when life has flowed more easily, I also recognize that the school of hard knocks, flops and sometimes defeat helped harden my resolve and resilience along the way.
Such is life with an autistic child or adult and all its intricacies. Given where they fall on the spectrum sets in motion so many parameters as to what will be easy and what will be demanding of your time, advocacy, and physical or emotional well-being. What I’ve come to appreciate in recent years is the number of parents willing to share that this role is not an easy one. There are more groups on social media supporting those in some very challenging situations, which, quite frankly, are often hard for others to witness. At times making it is easier to turn a blind eye because the reality is far from idyllic, not a version of Life on the Spectrum or a Hallmark movie, but rather one rarely spoken about and grossly misrepresented and misunderstood. Not to mention the backlash many parents raising autistic children and adults receive from some in the autistic community if they use the “wrong” terms or descriptors when referring to their loved one. And let’s be fair, not all autism is the same. I use the term profound to fast-track where my son falls on the spectrum for people who know nothing about him, not to diminish him as a person. Here’s a classic example: I cannot count the number of times when I’ve taken Jonathan to an appointment with a new provider for an evaluation or assessment and been asked to wait in the lobby, despite pointing out the obvious. I look at my watch and before the two-minute mark, a very flustered nurse or technician appears to ask me to come back to the room once they discover that he cannot communicate in a way they understand and he clearly struggles to understand the language they direct at him. Just saying.
While none of us on the opposite end would call our lives easy, we have embraced it with everything we can muster. Profound autism, aggression, non-verbal, intellectually impaired, the list is lengthy. We have been a silent minority for decades, but that is changing and for the better. It’s not about pity or sympathy; that’s too easy and accomplishes very little. It’s about representing our loved ones and empowering a better quality of life for them as well as for us. It’s pushing back against ignorance, hateful comments about our lack of ability to parent properly―yeah, like it’s that easy. Feeling attacked at times from all sides, not certain where or what to fight first. And at its worst, picking up the pieces. Be it yourself, your loved one or what’s left of your home when the dust settles. Hard? Yes, like granite at times. Hard to give up? No! Surprisingly, for many of us, that’s often the easiest part because even in the worst of times, the love we feel can and does often penetrate many setbacks.
So, for those out there unfamiliar with the lives of many families living and loving autistic children and adults, here is a simple request. The next time you witness a child or adult struggling, look at the parent or caregiver next to them. Ask yourself, what can I do in this moment to make things easier for them? I’ve witnessed this scenario time and time again. From the grocery store to church, doctors office to the playground and everywhere in between. Caring is a simple act of human kindness that goes a long way. It could be as easy as offering to help carry groceries, watching their purse as they assist their loved one or helping them get safely to their car- with a kind word, encouragement or empathy. The opposite is judgement of any kind– be it a condescending look or gesture, outright staring like it’s entertaining or worst of all shaming and blaming with harsh criticism in full view of others. Hard to understand how in a time of utmost vulnerability for those on the spectrum and their loved ones, there are those who can be so cruel and thoughtless. Judgement and condemnation need to stop and it shouldn’t be so hard to do, in fact it should be easy as pie. Kindness starts and judgment ends with every one of us.
Let me know if you find an easy button that can accomplish that one!
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