A lot of photographers participate in 365/52 projects, where somebody establishes a theme, and each participant then hunts around for images in their lives that illustrate what that theme means to them. I briefly thought about signing up for one of these projects. And then I thought about how crazy my life is, and how I did not need the added pressure of identifying how themes manifest themselves in the course of me doing laundry or making dinner for my kids.
I did want to take on some sort of personal project this year. I spend the vast majority of my photography time creating images for clients. These images are all carefully thought out and fully retouched in such a way that my clients can proudly display them in large sizes on their walls. I love doing that. I love creating beautiful art for my clients’ walls. But I needed to both practice my photojournalism skills (very different from my usual style) and turn the camera around to focus on my own life. And to do so and keep this project moving, I would not spend much time on perfection. What I seek is accuracy and honesty (kind of like how I speak, if you’ve ever met me in person).
The more I thought about it, I realized that I am already a part of a group. As some of you may know, I have a part of my life that is not so clean, perfect, or beautiful. It begins with “A” and ends with “utism”. It’s a big and growing club. And we autism parents share many, many things in common, although each of our children are different in a way that only the snowflake metaphor could aptly convey. In fact, when we get together, it’s a bunch of head nodding and sympathetic “I’ve been through that same IEP meeting” verbal high-fives. It’s a club that no one wants to be a member of, but one we wish everybody else could be a member of for only one day. (I’m pretty sure it’s the same for parents of any type of special needs child.) When we come home from birthday parties held for “typical” children, and from stressful outings to public places where we endure the looks of strangers who don’t understand why our children simply don’t “behave”, I think we all may wonder what it is that non-club members actually know about our lives.
A few years ago, a boss at my old job – pre-photography – stated that “it’s basically a learning disability, isn’t it?”. This phrase has really stuck with me over time, as my own understanding of autism has grown and the skeleton of my new post-autism life starts to calcify. No. It. Isn’t. However, I can’t say that I myself paused much to think about autism and what it might actually mean for a child and family, prior to The Diagnosis in my own life. Why would I? Why would you? You just can’t know until you’ve experienced it first-hand.
And as my crazy busy season wrapped up in my photography business, I began to settle upon the idea of a photojournalism project, the goal of which will be to paint a photographic picture of what autism actually looks like. My main goal is to somehow portray how autism plays out in the banalities of family life, and not to create a Photoshopped, dramatic portrait of heroic individuals who have somehow overcome autism, or who have managed to turn their savant skill into something that made them rich, fabulous, or at least into an HBO movie.
So I am opening up my otherwise perfected photography blog to begin documenting the everyday lives of families living with autism. And to kick it off, let’s start with my own life. I thought about Instagramming this stuff or running it through Photoshop to achieve some glossy, vintage finishes. But the fact is, my life isn’t glossy or Photoshopped (no one’s is, actually). So you’ll see that not a single one of these images has been retouched or “popped” in Photoshop. They are what they are. : )
Meet my son. He’s four. He likes to twist stuff. A lot. He also likes to bite stuff (non-human) a lot. And when he doesn’t have one of his trusty yellow cords, he will find the nearest cord possible, even if it’s connected to a humidifier or it takes the form of a wire hanger. And when he can’t find one of his rubber “chewies” to gnaw on, his shirt will do. And when he needs to sooth himself, he swings. We have two swings in our house – one smack in the middle of our foyer/living room, and the other in his bedroom. In fact, if you visit our house, you’ll find all sorts of sensory “equipment” lying around. Autistic kids often have various sensory needs – they either seek input or avoid it, depending on how their brain is wired.
I have no idea how a single cord can be fascinating enough to pass the day twisting it. I wish I could see what my son sees when he winds these cords. Sometimes I think that he twists the cords simply because he doesn’t know what else to do with himself. For a while, we decided to lift up from the floor all of the free-standing lamps, purses, belts, and toys with attached strings, believing that we could somehow stop him from twisting, twisting, twisting if he couldn’t reach these. Eventually, we gave up. You would not believe how many things in this world can be twisted. As time went by, my son isolated his twisting to just a few selected objects. I suppose that this is progress, or at least, less annoying. : )
We have created a home-based therapy program for our son, just like a lot of families out there. Our particular program is based on the “Verbal Behavior” model, created by B.F. Skinner. This means that we have two-three therapists in our home on a weekly basis “training” our son to use words to request what he wants, generalize similar objects into a single category (rather than seeing them as specific, completely different things that have no relationship to each other ), learn to understand the concept of “no” without freaking out, and even how to eat more than four foods and pull his pants up after he goes to the bathroom.
(Our Verbal Behavior program, combined with Occupational Therapy and visits to specialized child psychiatrists, cost us between $3,000 and $4,000/month out of pocket. I could write an entire blog post about the paperwork involved in attempting to get our insurance company to cover anything, as well as the hours out of our week that we spend on the phone, in the car, or filling out forms related to all of these appointments, but that would be boring and tragic. I think – for this post – I’ll just stick to the stuff that makes for a decent photo.)
In order to get so much as a tickle, my son has to use sign language or verbally request it.
While it’s highly repetitive and downright boring from an outsider’s perspective, my son actually enjoys his therapy sessions and loves his therapists. He gets to jump, crash, get hugs, get rewarded with tons of junk food if he asks for something correctly, and gets – above all – entertainment. Because, you see, my son doesn’t know how to play. He doesn’t know how to entertain himself. He doesn’t get anything out of TV, books or toys. And this program helps him figure out how to “use” toys and do stuff besides….twist….cords.
Our therapists break my son’s behavior, requests, and level of independence vis-a-vis designated tasks into measurable data. We have a big fat binder with lots of paper in it, full of lots of abbreviations that I do not fully understand. Below is a photo of my husband breaking down the action of my son pulling on his own pants into a segmented “task analysis”. Honestly, we just do our best to remember to perform all of these things correctly during the course of our day, when our therapists aren’t around. That’s probably the hardest part – remembering to incorporate all of this behavioral science and structured communication methodology into our days at the same time as we need to cook dinner, change my daughter’s diaper, and get our kids fed/ready for bed/out the door. It ain’t easy.
Now for a visit to our Occupational Therapist. Don’t know what they do? Well, to tell you the truth, neither do I. From my perspective, though, it looks like a lot of fun. It’s a room full of soft things to crash into, as well as swings and a whole bunch of awesome full-body toys that you are encouraged to touch, squeeze and jump on. I can’t think of a better way to spend an hour. Obviously, my son loves it.
Below, you’ll see a visual example of how autistic kids interact with each other. Right before I snapped this photo, the two therapists tried to introduce the boys to each other and have them greet one another. It was like watching two north-pointing magnets try to connect. No matter how much you push the two magnets together, they will repel each other and look away.
That facial expression you see down below? The spacey one? Yeah. That’s the million yard Autism Stare. I’ve spotted it on plenty of autistic kids. It’s that faraway look that pretty much visually sums up the canyon of space between autistic people and the rest of us “neurotypicals”. What they see, what they think, what they feel? No idea. I wonder if it’s fun “in there”…
Here’s another “favorite” look of my son’s. The “Sensory Overload / Happy / Hand Flap” face. To be honest, it’s a toss-up whether this look or his inexplicable giggle outbursts are more unsettling to me. These are the things that make my son look “different” when we’re out in public. If it wasn’t for these, we might be able to “pass”. I know that some autism advocates are loud and proud about their “stimming”, but oh, what I wouldn’t give for a completely normal public outing, where I didn’t have to explain to people that my son is autistic and that is why he grabbed that french fry off your plate. Maybe one day, after enough years of therapy, my dream will come true.
And for anyone who saw the Temple Grandin movie on HBO (she’s the face of autism these days), here is the modern-day occupational therapy version of her notorious “Squeeze Machine”. Unsurprisingly, my son loves it. It gives him the full-body input that makes him feel regulated and aware of where his body is in relation to gravity, walls, the ground, you name it.
And to close up this little Autism 101 tour, let’s go back to my home and check out The Tools.
Here’s a quickly put together collection of various sensory tools we’ve bought over the past year. There’s a compression vest (to squeeze around my son’s torso), a weighted vest (to give him a greater gravitational pull towards the ground), leg weights (to give him input and keep him from repetitively running up and down the length of our house), various twisty implements, and of course, an array of chewies, one of which vibrates (oral input). At this point, my son is just down to his trusty cord. But they do use some of these in school to encourage him to sit in order to learn.
Next up? Various table-top learning activities designed for kids like my son, who need help grouping similar concepts and objects into categories, labeling colors and actions, and just plain learning to speak.
Last up in this gallery of my life? Medication (natural and otherwise). A pill crusher. An oral syringe. While there is no cure for autism, some parents have managed to reduce certain problem behaviors (like OCD and aggression) with various anti-depressants. Our current main concern for our son is sleep. And the drugs you see below? They’re not working. At all. When he decides that he needs to get whatever it is that he wants in that cabinet? Absolutely nothing can shift his mind onto some other topic. And when he wakes up at 3:30am, he often stays that way. And then doesn’t take a nap that afternoon. And then gets more “autistic” as the day goes by. And then stays up til 11pm the following night talking and giggling to himself. Little known fact: autistic children often can’t fall asleep or stay asleep. Again, it has to be something going on in their heads that the rest of us cannot fathom. It’s as if my son cannot turn his mind off, even if he wanted to. But maybe he doesn’t want to. Maybe he likes what’s going on up there. I’m not sure that I’ll ever know.