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Sparkle (1)
I want to tell you a secret about Autism Awareness Month. 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 recent BlogHer profilee Laura Shumaker, whose son Matthew is now an adult.
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 those 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
