How to Win at Autism 'Snakes and Ladders'

During a recent conversation with my mother-in-law, I lamented how our experiences with autism often feel like a constant go-round of “two steps forward, one step back.” What I mean by this is that one day my 5-year-old son will astound us with a new skill we were told would take ages to develop (riding a bike, for example), and then a “stim” (stimulatory behavior such as jumping, vocalizing, chewing on clothing, etc.) will pop up seemingly out of nowhere and significantly interfere with his learning. We’ll be smiling to ourselves that it’s been months with no seizure activity, and then, soon after, he’ll need to be hospitalized for pneumonia. Or perhaps we’ll get a call to find that we have finally been offered a spot in a particular therapy, but it will also entail additional appointments, costs, and/or juggling of medications and schedules.

When it comes to autism, it seems we live in a permanent state of breath-holding, other-shoe-dropping apprehension. The last few years have been a game of “Snakes and Ladders;” no sooner do we feel like we’re advancing in the social-cognitive-language developmental game, we feel as if we are hurtled back down the snake. This game, of course, is no game at all; it feels incredibly frustrating, and parents like us are anxiously aware we may never reach that last square on the board, where our child becomes an independent adult. 

The picture above describes many of these moments in the autism game of Snakes and Ladders. Parents finally get respite care to take a night off only to return to learn your child had a seizure or meltdown while you were out. Your child has an amazing aide at their school, and months later you may learn she’s heading off on maternity leave. Your kiddo gets invited to a playdate, and the mother of the other child mentions casually about (another) birthday party from which your child was excluded. You finally have your child’s therapy schedule sorted out, and, dammit, a new therapist calls in sick (again). The list goes on and on of often daily snakes and ladders. 

So how do we win? How do we push on in the face of all of these progressions and regressions? The back and forth. The truth is that we must change the way we think. We cannot look at autism as a linear developmental game of Snakes and Ladders but as hierarchical — as a pyramid. I now do my absolute best (and I fail on a lot of days), to imprint Maslow’s Hierarchy of Needs into my thinking. I want my child, within the parameters of this pyramid, to learn as much as he can, become as independent as he can, while achieving the highest level of self-actualization possible. 

I, along with my family and team of therapists, will do what it takes to support my son, Quinn, in achieving his physiological and safety needs. We will nurture belongingness and acceptance in our family, schools and society. We will help Quinn cultivate strong self-esteem and feelings of accomplishment, and we will not allow him to measure accomplishment against socially constructed notions of success. Quinn and his circle of love and support will help him define his own accomplishments. We will celebrate every single one. 

If he regains language, great. If not, we will nurture alternative communication methods. We will greet every skill development challenge with this same loving adaptation and support. In doing so, we’re hopeful he will achieve the highest level of self-actualization possible; and everyone, no matter what their ability or challenges may be, can achieve these objectives. This is a game everyone can win. 

This post originally appeared on Project Bearings.

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