What response do you get from people when you mention your child’s difference or try to explain it to them? I can categorize our responses into three distinct groups.
1. From total strangers — and my mentions of autism in this context are rare — the response is pity. Clearly pity, and with it a lack of understanding of what I’m even talking about. And then, of course, I find myself struggling to clarify why pity simply isn’t necessary, to get across with pith what a great person my son is, what a total joy it is to have a wonderful person like him in my life. It’s rare that I bring up autism to strangers, although if I were savvier, I could use it as a way to enhance awareness and downgrade the pity response.
2. From casual acquaintances, such as parents of other children and periodically from others closer to me: “I don’t like labels.” “He seems like a pretty normal kid to me.”
These responses set my teeth on edge. They speak to so many things: Diminishing what my son’s struggles are. An accusation that we’re magnifying his struggles, or, worse have sought and gotten the “diagnosis du jour” of autism for a child who’s merely quirky. An implication that if we just left him alone without labels, he’d be just fine.
Of course, I have to forgive these responses. Sometimes, they’re just well meaning, an effort to say, “Well, even with that difference, he’s just a kid like other kids.” Sometimes, it’s exactly the implied criticism I think it is. But I must forgive. They know not of what they speak. How could they?
Invariably, these responses come from parents of neurotypical children. The fact is, They just don’t get it. They never will. Sorry, but unless you’ve spent hours wondering why your child’s anxiety leads to nonlinear, bizarre suicidal ideation at age 3, you’re not gonna get it. Unless you look at your nine-year-old child and marvel at how far he’s come that he can say, “I’m going to go interact with that child over there,” and wonder if it’s the intensive therapies or your own efforts or his efforts or all of the above, you don’t get it. Unless you’ve spent days fending off perseveration over strawberry plants because you unwittingly drove by a plant nursery, you’re not gonna get it.
Unless you still, every day and all day, remind your child that makingthose faces and noises in certain situations isn’t gonna fly, you’re not gonna get it. Unless you’ve spent every car ride listening to a symphony of self-regulating, Bobby McFerrin sounds and echolalic bursts from the back seat, you’re not gonna get it. Unless you’ve peeled your child off of every door frame associated with every new encounter involving new people just to get him in the room (or, if the meltdown’s bad enough, out of it), you’re not gonna get it.
And unless you’ve helplessly watched your child, for years, be unable to fend off even the most overt bullying and childish attacks on the playground because he either didn’t detect them or has no idea what to do, you are not gonna get it. If your heart hasn’t broken over watching the contrast between what your child doesn’t get about human interaction and what other children do get, You. Are. Not. Gonna. Get. It.
Parents of neurotypical kids worry, I know. I just don’t know what exactly they worry about. Their worries are not mine. Their triumphs and pleasures are not ours. I do not get them. They probably wouldn’t understand the sheer breakthrough it would be for us one day to go to a playground and have one of our sons play with a strange child without seeing that child back away slowly, confused or bemused, or downright hostile.
They probably don’t lie awake at night, wondering, hoping, considering whether or not there will be a person out there, the Just Right Person, who some day will appreciate their child’s quirks and oddities and inability to remember to zip his pants or put his shirt on with the tag inside right along with his incredible sense of humor and beautiful mind. They likely don’t stare into a void sometimes in which their child is lonely, ostracized, suicidal, and devastated as an adult, even as he sometimes was as a child thanks to the verbal–and sometimes physical–brutality of people who see him as an oversized, grimacing freak rather than as the complex, funny, brilliant, unpredictable, entertaining fellow he is. They may not submit themselves helplessly on a daily basis to the side of grace and positivity and hope in humanity and progress simply to keep functioning and moving forward and looking to the future.
So, because they do not get it, I must forgive them. I must forgive the skepticism, the inherent criticism of my parenting or my choices or our use of a “label.” They’re not gonna get it, and right along with that, they’re missing out on so much of the happiness we have in our lives thanks to our complex, fascinating, joyful children. As with everything else, there are tradeoffs here.
3. And that takes me to response category three, the responses I get from other parents of special needs children and from professionals who work with them. It’s always been, “You’re a member of our club. We get it.”
I’ve had parents of special needs kids pick up right away on our son’s differences. We laugh over the funnier commonalities of behaviors our children share. We commiserate over the anxieties these differences can bring to us and our children, ironically often not born of our different children themselves but of how others receive and perceive them.
I cannot recall a single instance of a professional therapist or a special needs parent who queried our son’s autism or questioned whether or not it was real or shrugged off “label.” Why? Because they get it. They know how important that label can be as a key to the special needs toolbox. They know what it means for people to stare when your child flaps or says something odd and without volume or tone modulation. They know what it means for others to blow off your child as a brat or needing a spanking or as a willful bully or just requiring a firmer hand (things don’t get firmer than they are around here, I can assure you).
And for them, rather than having to be forgiving, I am simply thankful. You all know who you are. You’re the ones who, like us … just get it.