You can light it up blue.
You can change your social media avatars for a day.
You can eat Twizzlers until you puke.
You can make cute memes with multicolored puzzle pieces, pin a gazillion blue (or purple or whatever the hell color we’re using now) ribbons to yourself, your door, your trees, your car antennae.
My questions, as a member of a family affected by autism, are these: How does that improve my daughter’s life? How does it improve our lives as the people who care for her? How does it improve the efficacy or competence of those who treat her, educate her, or – possibly – employ her? How does your blue light bulb do ANYTHING to raise the social consciousness – for more than 24 hours – of a group broader than autistics and those already entrenched in autism communities? Because, tomorrow – April 3 – autistics and their families will still be here. And we will still be a community growing. And we will still be a community aging and presenting with evolving needs – needs that outlive the currently available supports.
So, this April 2, I am asking you (the “you” here being my readers who are NOT autistic themselves or caring for someone who is autistic) to make this World Autism ACTION Day. Make today – and as many other days as you can manage – the day you DO something. You can donate money or time. You can educate yourself. Both of these are a great help but are not necessarily things you can do every day. However, there are things you can do today and every day after today. These things will matter equally – if not more – than miles walked, dollars donated or articles shared.
BE A FRIEND. Being autistic and caring for an autistic person can be very isolating. It is a myth that autistics do not want friends or social interaction. But, it is true that friendships and social interactions can be extremely difficult for autistics to navigate for reasons as varied as fingerprints: continuity of schedule, sensitivity to sound, light, texture; difficulty interpreting body language or facial expressions, struggles with receptive or expressive language. Being a friend means being patient; it means a willingness to actively focus on ways you can communicate instead of dwelling on ways you cannot; and, it means meeting the autistic person where she is. For example, you would not ask a wheelchair-user to meet you at your second-story apartment if the lift were broken. Nor would you ask a blind person to leave her cane at home because it “embarrasses” you. The same logic applies to accommodating an autistic person. Asking or expecting an autistic person to visit your home, a restaurant, a museum, a park or any other place that she can’t access at all or without proper supports (whether due to sensory issues, anxiety or communication barriers) is the same as asking a wheelchair user to navigate stairs or asking a blind man to go out without his cane. It’s unkind, it demonstrates a lack of awareness or acceptance, and it’s completely counterproductive to establishing a real, caring relationship.
Similarly, take a moment to reflect on what the families of autistic persons experience. We have in many cases altered our lives in significant ways to create an environment in which our autistic loved one can thrive. We have carefully curated – through years of trial and error – routines, schedules, familiar places, safe people, preferred foods, go-to comfort objects, reliable communication methods and – when all else fails – evacuation plans. The kindest friend to an autism family is the friend who does not ask the family to fit into her social schedule / life but how she can fit into theirs. And if that means that the friendship becomes about sharing an occasional cup of lukewarm coffee over your friend’s dining room table without so much as a blink in the direction of the chaotic pile of IEP notes, the floor littered with toys lined up like soldiers and ducks, or the unwashed dishes in the sink, let that be enough for you. I promise you – with all of my heart and to the bottom of my soul – it is enough for your friend. In fact, that small act of kindness may be a lifeline.
SEE THROUGH DIFFERENT LENSES. Yesterday, when I got home from work – as in, the very minute I walked in the door – Helene was in the throes of an escalation. She was anxious and agitated, because her ABA therapist wanted Helene to agree to go on an outing. So, I dropped my bag, and I sat down with Helene on the floor, and we talked. I tried to tease out of her why she didn’t want to go. We negotiated choices of location. We talked about what scared her. (And, bear in mind, Helene has very limited expressive language, so this requires artistic inquisition as well as insightful listening. In other words, a whole lot of attention that I typically don’t have after a long commute.) Finally, she selected a location, voluntarily put on her shoes, and headed toward the door. She then announced, without explanation or an ounce of diplomacy, that Papa was not to come with us but to stay home with Ralph (our cat). Her reasoning? “Because Papa stays here with kitties.” Circular and unassailable – kind of like a moat. The husband and I have to do the telepathic communication thing to decide whether to fight this battle, now that she’s agreed – after 20 full minutes of assurances, affirmations, negotiations – to leave the house. (And, FYI, telepathy is NOT the most reliable mode of communication for decision making. *ahem*) Thankfully, we silently agreed Papa would stay home.
On the way there, I spent the ride laying out the boundaries of our outing – where we will park, how we will walk through the parking lot, how long we will stay, what can be purchased, where we will go after we are done. Predictability gives Helene the confidence she needs to get out of the car and walk into the store.
To recap, I’ve worked all day, just driven 70 miles in heavy traffic, didn’t even get a chance to pee before unexpectedly heading back out, I’m chauffeuring a child who whose presence is the product of a deal negotiation even Israel and Pakistan would admire, and I’m balancing my hope that this goes well and builds Helene’s confidence against my stress and worry about the fallout if it doesn’t go well, because she feeds off my moods like a vulture on roadkill. (So, yeah, about that empathy thing … *headdesk*)
And then – RIGHT AS WE WALK IN THE DOOR – we hear the store’s cashier loudly declare to a customer that she “just can’t go there” with “screaming kids like that.” Helene’s ABA therapist (who has joined us) and I exchange the same knowing-but-worried glance. I’m now walking a tightrope with a bed of hot coals as a safety net. It’s not that I give two shits what the snot-nosed, 2o-ish cashier thinks about me or my parenting; it’s that there is a real possibility that Helene appears at some point during this outing to be a “screaming kid like that.” I care a great deal about people judging my daughter, particularly when the judgmental person thinks she understands what she’s seeing and hearing but absolutely does not. Make no mistake, Helene screaming will NOT be due to a temper tantrum brought on by overindulgence but a genuine expression of pain from sensory stimulus or of frustration because of her language limits.
On this day, though, Helene is a ROCK STAR. She picked her items (and even negotiated herself a slightly better deal). She said please and thank you without prompting. She waited patiently in line when we checked out. She was alert in the parking lot as we walked from the store to the car. It was HUGE and AWESOME. It is a moment I relish because it offers a hopeful glimpse into a less worrisome and more independent future for her.
Other trips have not had such happy endings. There have been meltdowns or escalations over things beyond our control: loud music playing the store, a crying baby, someone vacuuming, waiting too long for a table. When it happens, we are at the end of our ropes. What you don’t see is the length of the rope left behind – measured by how hard we worked – all of us – to make that outing a success. You don’t see the 20-minute (or more) lead up to even get out of the house. You don’t see the sleep deprivation or the challenges from that day’s work at school and therapy. You don’t see anxiety and sensory processing disorder (but they are no less real). What you see is your judgment – a spoiled child about whose behavior the parents are apathetic, overly indulgent or selfishly uncaring.
Now see the world from Helene’s point of view. Or mine. Or Papa’s. Or Nate’s. Imagine a life where there is simply no such thing as “running to the store for milk.” Imagine a life where a “vacation” is grocery shopping or running errands by yourself. (I mean, seriously, the opportunity to go to Target alone is so significant in my life, I actually write about that in my FB status updates and tweets.) Imagine a life in which you stare longingly at the swings, slides and monkey bars at the park, but your crippling fear of birds and wind keep you indoors. Imagine a life where your whole family can never make your music performance, because someone has to stay home with your autistic sibling who can’t attend (for any number of totally valid reasons).
Make an effort to see these things the next time you eyeball that kid wailing and thrashing on the floor at Walmart. If you can’t bring yourself to project kindness, give that poor mom or dad the gift of walking away without the condescending stare, and save your comments until you are well out of our earshot. It’s not that anyone wants your pity. And it’s not that anyone wants your attention. What I want is your patience. What I want is your understanding. What I want is your compassion. And if you cannot bring yourself to share any of that, what I want is you to turn your head the other way and zip your lip. (And, listen, whether a parent is an incompetent asshole or is struggling with demons you cannot fathom, I have YET to see rolling eyes and tsk-tsking suddenly render the offending parent or child calm/acceptable/presentable or whatever the hell else it is you want, Judgy McJudgerson.)
REMEMBER, IT’S NOT ABOUT YOU. I have people in my life – and based upon conversations with other autistic caregivers, I’m not alone in this – who really do not understand autism (notwithstanding their feelings to the contrary). They bristle at the idea that Helene can’t (not won’t – can’t) go to certain places, be around certain environments or tolerate certain noises or feelings. These people insist that Helene give kisses and hugs, that she make eye contact during a conversation, that she come to them for visits, that she sit still at the table for a meal, that she eat whatever is being served to her, that she speak to them when she is spoken to, that all kids love to get dirty so she must too, or that all kids love macaroni/hot dogs/candy so she will too. These people take it as a personal insult when Helene doesn’t meet their expectations – particularly if she seems to do such things for other people. If you want to do something for World Autism Awareness Day, educate yourself about why these behaviors are not about you. This is a huge part of meeting an autistic person where she is.
I am grateful in this regard to my in-laws. We see my in-laws most Sundays. Our visits have evolved from meeting at local restaurants for breakfast, to meeting for afternoon coffee out, to meeting for coffee at their house or ours to meeting pretty much just at our house. Helene’s grandparents understand the challenges she has navigating restaurants – from the discomfiting smell of too many foods at once, to the pain and confusion of hearing too many voices at once, to the physical challenge of sitting still in an uncomfortable chair or booth during our idle chit-chat. As long as we spend family time together, the venue is not at all important outside the parameter that it is one in which Helene can relax and access us.
Helene’s grandfather also calls her on the telephone almost every night. The conversations are short and pretty predictable. Mostly they talk about what Helene ate for dinner (pizza or PBJ), and her grandfather tells her he loves her. But, there are many nights – maybe more than less – where Helene refuses to get on the phone. Her refusal is often a VERY LOUD, I don’t wanna talk to Gordo! My father-in-law takes this in stride. He will still shout, “I love you, prieta!” into the phone so that Helene can hear it, and he still calls her again the next night. And the next. And the next. Because he understands. There are other nights where Helene initially refuses the call only to come ten minutes later to us crying that she DID want to talk to Gordo. And he talks to her when she calls him back, never asking her why she didn’t want to talk in the first place. Why? Because it doesn’t matter to him. It matters only that his granddaughter knows how much he loves her, so he meets her wherever she is.
Today, what I want is for you to promise yourself that you will be a friend – whether to an autistic person or to someone who cares for an autistic person, by meeting your friend where s/he is. You will try to see behavior from a new perspective, granting compassion without (or at least before) rendering judgment.
Awareness, acceptance, understanding … I don’t care about the label. I care only about the genuineness of the affection motivating the action.
ProfMomEsq 