Shannon Des Roches Rosa
I want to tell you a secret about Autism Awareness. I’m telling you because you have a stake in the autism community; whether you touch one or many lives, you can change them, you are powerful. And, like me, you care. You want to make a difference — for yourself, for your child, for someone you love, for someone who depends on you. And you can make a difference, you will, if you keep this cornerstone of Autism Awareness in mind at all times. Ready? Here it is:
Behavior is communication. That’s it. That’s all. That’s everything.
If you put your mental backbone into behavioral awareness, into trying to understand why a person with autism, or a person associated with autism, behaves the way they do — if you can make yourself truly aware of that person’s needs — then that is when the connections will happen, that is when you will make a difference, that is when awareness can leapfrog goodwill, and translate into real-world benefits and positive actions.
If you’re a parent of a young child with a new autism diagnosis, a behavioral awareness mindshift can be hard. It’s not how most of us are taught to think about parenting. And you’re already struggling with so much right now: you love your child, want the best outcome for your child — yet you’ve been handed an autism label with all its associated baggage and media fearmongering.
You need to remember that an autism label is just that — a label. It can help describe your child, but it doesn’t define your child. You need to set the label aside, enlist it as needed, and instead hyperfocus on what your child does, and why they do it. You’ll probably have to jettison some lingering hopes and dreams about your child’s future to focus on your child’s reality — but since parenting always involves a large amount of eventual ego-disentangling, assure yourself that you’re actually ahead of the curve.
You can learn a lot from parents who actively practice behavioral awareness, parents like Todd Drezner, who directed the must-see autism understanding and acceptance movie Loving Lampposts; Kristina Chew, mother of the legendary and now teenage Charlie; Jennifer Byde Myers, whose son Jake has a constellation of diagnoses besides autism; and author Laura Shumaker, whose son Matthew is legally of drinking age.
But, the behaviors! They don’t always make sense, not on the surface, not if you’ve never encountered anything like them before. Does your child scream if they can’t wear their favorite shoes? Can they talk happily (and indefinitely) about sprinkler systems or precious gems or superheroes? Do they enjoy fondling material of certain textures without regard for where or on whom that fabric may be located? Do they fear the toilet, the market, the dentist? Make understanding those behaviors the focus of your approach. Decide which quirks are quirky, and which are legitimate impediments to learning, self-care, health, and socialization — then put your energies into helping your child get past the roadblocks.
Get professional help if possible, from a behaviorist who can explain that yelling at a child to stop unspooling toilet paper or “punishing” a child by ousting them from circle time may actually be exactly what that kid wants — you may be unwittingly helping perpetuate undesired behaviors. But know that not all professionals are going to be in tune with your child’s behaviors, no matter how much training and experience they’ve had. Be careful about ceding authority to a professional whose own behavior is more about showcasing their knowledge, and less about applying their observation skills to help you or your child.
Most autism community members who practice behavioral awareness will eventually encounter autism parents who disagree about best autism practices. And that’s OK, too — if you understand those parents’ behavior. Are they truly interested in giving their child the best life possible? Do they fight hard for educational placements and evidence-based supports? Are any of their chosen therapies actively harming their child? If the answers are “yes,” “yes,” and “no,” then you likely have more in common with those parents than not, and the relationships are worth pursuing. You don’t have to agree with autism parents about every last thing — I doubt that any useful, forward-thinking community is a Shangri-La of consensus. But you do need to be wary of parents who place their egos, their fear of autism, and their desire for a “typical” child above the needs of the actual children in their care. Still, you should support those parents by listening, if they’ll let you — with enough positive role modeling, they may swing round and start investing in behavioral awareness, their kids might receive respect in addition to love, and our community will strengthen and become more whole.
When I feel the need to better understand my son Leo’s behaviors, or when I’m feeling low because despite his and our best efforts, we cannot solve his behavioral crises, I seek solace in the experiences of people with autism. Sometimes I use Twitter — a great resource for queries both specific and general (many of my Twitter conversations have deepened into cherished friendships). Sometimes I search those same autistics’ blogs or message boards as a grateful lurker. I don’t always find agreement — peoples’ backgrounds and experience vary, as they do in most populations. And not all people with autism are interested in being role models or sounding boards for parents like me, which is fair. But I almost always come away with greater understanding, useful information, and a renewed awe for the generosity of the autistic community.
Behavioral awareness is not a magical mitigation tool. We still have tough times: Leo finds summers and their schedule disruptions disorienting and distressing, and sometimes he is inconsolable. My husband and I do our best to understand why Leo gets so upset, and sometimes Leo tries to tell us. But our boy doesn’t always have the language he needs; at times, he cries himself to sleep out of frustration and exhaustion. It breaks all three of our hearts.
I know these episodes will get easier as Leo’s communication skills improve. I also know that they used to be commonplace, especially when Leo was little, before we understood so many of the behaviors that make our wonderful boy tick, and before we had the awareness to appreciate our son for exactly who he is.
A version of this essay was previously published at BlogHer.com.