Life with autism is filled with ups and downs. If I had to choose a ride that shares similarities it would be a roller coaster. To be more precise for those of you who have been to Disney World-Space Mountain. As you stand in line you’re filled with a mixture of excitement, anticipation and for some, a bit of dread. The ride begins and you enter pitch black darkness as you journey to the unknown. Part of the ride is filled with twists and turns that are exhilarating, others leave you breathless as you wait for the end you know will come. You make a slow, steady climb up and then before you know it, you plummet downward at a frightening speed. Terrified screams replace words as we succumb to its power and force. When it ends we may shakily exit but our feet find solid ground once again. Much like my own ride with autism.
For me, the biggest downside to Jonathan’s autism has been the inability to properly communicate with him. As I have mentioned before, I am not proficient at puzzles and trying to interpret the nonverbal communication has been the hardest one to solve. I can tell when he’s happy or tired or even agitated. But his angry outbursts seem to come on suddenly, often for no visible reason. One minute he’s smiling― but the next, he’s agitated or angry. Sometimes it’s obvious why: certain sounds or a disruption of some sort that he wasn’t prepared for.
Oftentimes I’m in the dark, baffled as to what has caused his frustration or outburst. It could be something that just happened, or something that occurred days or weeks prior. When this happens, I have to try to put the pieces together to make sense of or understand what he’s saying without words. The downward spiral is an abyss for both of us. I was reminded of this yet again at his most recent doctor’s appointment.
Despite every effort to understand and manage his behaviors, it remains a roller coaster ride to say the least. While discussing concerns with his new neurologist, I felt the ride begin and the pit in my stomach as I noticed Jonathan’s reactions. The doctor asked Jonathan questions he was unable to answer and I could see his agitation increase. As always, he looked to me to intervene. But as I did, I had to wonder if I was on the right track.
As I told the doctor, the disadvantage of not being able to communicate with Jonathan is that most of what I witness is subjective. I can only make my best guess and I often feel like my shots in the dark are falling short, especially as Jonathan has become an adult. In turn, he becomes frustrated or maybe even embarrassed that at the age of 27, mom is still doing most of the talking for him.
Jeff attends most of his appointments now, since I want to respect his privacy and integrity. But as my husband is the financial pundit, I’m the medical. My presence is often required to interpret and inform him medically. And because of Jonathan’s size, I can no longer physically manage his outbursts when they occur. Such was the case at this most recent visit.
What I try to remember is despite the rides’ downsides, there is always an up. For mine and Jonathan’s sake, it is imperative. Hard as it may be at times to stay seated, I fight to do so. Sometimes it’s easy, other times it’s a struggle. But through those encounters I’ve often found my strength, answers, or a new perspective.
While the stumbling blocks of autism can be brutal at times, like that terrifying plummet on a rollercoaster, it has an end. We survive the ride and ready ourselves for the next one.
Ticket in hand, I stand ready to ride the rollercoaster again.