“Dispel the darkness around us wretches. Take us for real people. Don’t sideline us.” –Tracy Thresher, “Wretches and Jabberers”
The other night I had the opportunity to bring my 24 year old autistic son Nat to a dinner with Tracy Thresher and Larry Bissonnette, the stars of the documentary “Wretches and Jabberers,” directed by Gerardine Wurzburg. The film was the kickoff movie for an event called “ReelAbilities,” a mini film festival running January 31 – February 6, under the aegis of the Boston Jewish Film Festival. ReelAbilities is dedicated to showing movies that have disability as a central aspect of the film. I did not figure out until much later that the terms “Wretches and Jabberers” refer to two groups of people: autistics who do not communicate verbally, and non-autistics who do. To the non-autistic talkative folks, non-verbal autistics seem misfortunate and pitiable in their silence — poor wretches. But to the autistics, the talkers seem to be jabbering non-stop.
Tracy and Larry are two middle-aged autistic men who grew up unable to speak and were thought to be completely unintelligent. Being unable to speak but hearing conversation all around you can be one of the most frustrating situations a human can bear. Whether you understand others’ words or not — and I believe that Tracy and Larry did understand a great deal of what was being said by others all their lives — you know that something is going on without you. I am a very talkative person, a jabberer many might say, and yet I feel that I can relate to this stomach-knotting feeling of being left out. I remember being in first grade and learning the concept of “dozens” and not grasping it, while the rest of the class did. The teacher got more and more animated as she realized “everyone” got it, and I had a terrible pang, a fear, I guess, that I was being left behind. Psychologists tell us — and it is no stretch to believe this — that the feeling of abandonment is the most primal fear. A child will do anything to stay alive, and will cling to the most destructive people and behaviors if it will get them any attention. Attention means you exist to someone else.
It is no wonder that many people with autism develop “behaviors” that can be anti-social, disruptive, aggressive, even. Wouldn’t you, if you could not express yourself but there you were, a full human in all of your red-blooded need, being ignored, ridiculed, pushed around, babied? If even the best people in your life, who loved you, did not talk to you in a way that you could respond, how would you cope?
A wretched state, yes. But it need not be so. The American Disability Rights movement which began in the 1960’s largely under the Kennedys’ benevolent power eventually led to the ADA (Americans with Disabilites Act) and then the IDEA (Individuals with Disabilties Education Act) and suddenly the formerly institutionalized and marginalized and infantilized and ostracized disabled were let out of facilities and into public schools. In the movie, Larry says that he was put in an institution at some point in his childhood, and he wondered what he had done wrong.
Just like the segregation of the blacks in the US, integration and inclusion was met with a lot of ignorance and other mean and nasty shit, but eventually society started to relent and include, and to accommodate the disabled students. Resignation and exposure leads eventually to familiarity and comfort, and we finally got to the 1990’s where we actually had bonafide programs in public schools for people with developmental and other disabilities. Most recently, we have autism education.
Which has brought us to the 21st century, the Age of Technology in Schools, which has led to typing as a form of communication. My son Nat missed that boat but is catching up now, but slowly. He communicates through email and Facebook, but it is fairly rote conversation and not all that frequent. We have to do better by Nat.
Larry and Tracy, from the movie, learned to type when they were in their 20’s. What started out as rote, superficial communication deepened over time to deeper and natural conversations — all through communication devices like the iPad. Both men are tremendously aware of the power typing has given them. In the movie, Tracy said, “I am more than anything [that you know]. Think what it would be like to not be able to talk and have to depend on whether people think you are intelligent and then remember these brave souls in front of you today.”
Now Larry and Tracy travel the world, meeting with other self-advocates who are trying to express their thoughts through typing, and trying to educate the jabberers to stop and wait and read what is being said to them.
It is very difficult for jabberers to stop and wait for a wretch to compose and then hammer out his words with one finger. Tracy in particular seemed to enjoy typing, moving his entire arm with every letter, and ending each sentence with a double-tap on the period, a lovely flourish that said, “Now I have spoken. Your move.” It takes a long time, and during the Q & A several audience members gave up while Larry continued at some length expressing his thoughts on how art and typing work together for him. (Larry is an artist, who uses Van Gogh-like swirling thick paint and photographs and writing together on canvas. Larry’s art has been exhibited in various places: a local Vermont gallery and coffee house, the Bennington Museum’s “More Like You than Not” exhibit in April 2013, as well as in Phoenix for a fundraiser, “The Art of Autism,” in April 2013. He also had a solo exhibit called “This was me–” old style portraits, Larry called them.) We mouth-users are going to have to get better at sitting still once the gigantic Spectrum of wretches start to demand that we listen to their typing.
At one point during the Q&A, Tracy typed,“Larry, Putting our typing out to the world is pretty powerful isn’t it?”
And Larry replied, “Pictorial representations brings you a cheeseburger. Typing, let’s you create a menu.”
• • •
I loved the film and spending time with Larry and Tracy. Larry talks more but it is hard to tell what he is saying. He also draws in the air with his index finger, as if he is already beginning another of his paintings. Tracy is far more silent, but his eyes take it all in and then he belts out an answer on his iPad. The best part of the evening for me was our dinner together, with several others from the Film Festival, Tracy and Larry’s caregivers Harvey and Pascal, as well as my husband Ned and Nat’s caregiver John. At the beginning of dinner, Tracy typed “Please that we are all able to meet and break bread together. Hi Nat nice to meet you.” Nat read this out loud. I wondered what he was thinking. I had told him the two men had autism like he did and that they type to talk, like he does on Facebook.
We had burritos and salad. Nat and Larry both unrolled theirs and ate the contents loose on their plates. I told Tracy, who seemed eager to talk to us (Larry was a bit more prickly about engaging directly) that Nat was beginning to type but that I did not know how to help him make the leap to his own self-generated conversation. He can type tidbits of original thought, but he often resorts to scripts because I’m sure they are easier for him to use. Or maybe he’s afraid of saying the wrong thing. I don’t know, I wish I did.
At dinner Tracy told me that it took years for him to be this fluent, and that Nat should keep practicing. That was pretty much the only serious discussion we had. The rest of the time the guys were joking around.
Someone asked, “Where did you get your sense of humor from, Larry?”
“having autism,” Larry replied.
Then Tracy added, “I taught Larry everything funny.”
Larry said, “Eeeh,” out loud and then typed: “kind of reverse.”
At one point Tracy talked about how he’d gone out on a date with Henna, a self-advocate redhead autistic woman from Finland, who is in the movie, too. He did not want to say much about it. “Well, you’re a gentleman,” Ned said. Gentlemen do not discuss their dates, of course. But then I told Tracy about how I had tried to help Nat set up a date with a girl from his Special Olympics team, and that she had declined.
Tracy said, “Nat, There are lots of young women that swim on Facebook.” Nat read it out loud. He did not say anything, but maybe if he’d had his iPad, he would have. I’d like to see Nat set free the way Tracy and Larry have been by typing. I’m willing — eager, actually — to wait to hear what he’s got to say. I hope that by the time he says it, the world will stop jabbering so much and wait and listen.
• • •
Yesterday I climbed a mountain on a bike. I hired a guide, Brian from Santa Barbara Fitness Tours, and together we planned our trek. Brian was a young man in his late 20’s, slim, bearded, and sporting a colorful tattoo on his leg. He gave me several options — did we want to do a more technical route with some singletrack areas that would test my mountain biking skills? Or did we want something less technical but still unpaved, and in the wilderness up high? Or old equestrian trails in Montecito? I told him I wanted wilderness, challenging climbing, and some technical maneuvering.
The night before the ride I dreamed of nothing but riding, and of things going all wrong. I awoke early because clearly sleep was not being a friend. I couldn’t wait to start but I had 4 hours, so I took breakfast out on the beach and thought more about what to do. I knew what I wanted, but I did not know which of Brian’s options would be right.
I decided finally on Romero Canyon fire road, because there would be a gigantic climb: 1000 feet elevation in just three miles. My usual ride is probably a 90 foot gain in one mile, and that is often tough. But here I was in Santa Barbara, California, mountains everywhere, and ocean besides, and I was going to go up a mountain.
“The first half mile is the worst,” Brian said as we walked our bikes to the fire road gate. I looked ahead and I saw a lot of rocky scree, almost no smooth ground. It bumped and stretched and twisted and rose like a gigantic angry yellow snake. Still, I got on and started pedaling. It was so hard pushing the pedals, up and over the scree. Every few feet, though, I would feel the bike kind of stop, or I guess it was me, and I’d lean over the handlebars and breathe hard. We ended up walking the bikes about 20 yards up until we got to a slightly more level part. This I could navigate — but it was so steep I had to burn and burn my legs and lungs just to keep moving. I tried not to look ahead because there was just more and more of that rising dusty road.
Suddenly, a break, but unfortunately it was a slope down into a creek bed. “Your best bet is to splash right through,” Brian said. I could see that I would have to go as fast as possible down those rocks and through that water in order to make it back up the slope on the other side. I watched a couple go ahead of us, and then Brian, and then, well, me.
The plunge downward felt like when you’re a little kid and you jump from something way too high. You just leap and you wait as you come down, hoping but also knowing that you were not going to fall. I splashed and pedaled, and I got about halfway up and then tanked. Okay, yet another break for me. Still, I had done it.
Pedal, peh-dahl PEH-DAHHHHL, ARGH. Hack, hack went my gasping lungs. I was gulping in air but none of it felt like it was going into my lungs. Instead, there was a bubble growing in my throat, pressure that felt like rising vomit. Was I going to puke? On my bike? That was a new one. But Brian said, “No one I’ve ever taken has puked yet,” and that snapped me right out of it. Brian said I wouldn’t puke, and so I didn’t puke.
We just kept going up, and the road was beginning to both reach up and curve back and forth, hugging the side of the mountain. Fairly quickly the side of the path became pretty sheer drops, with just some gray scratchy brush as a border. When we reached a kind of cement bridge, Brian said, “Okay, that was the worst of it. From now on it is going to be a lot more gradual, you’ll see.”
I hoped so. I just kept gasping. I thought the whole state could hear me breathing. I felt embarrassed by my needy lungs. I wondered if I could really keep doing this. I found myself thinking of childbirth, and how you suddenly pull within yourself to just get through a moment. You find it somewhere, your step to the next moment. You stay alive moment by moment, through the intense laboring of your body.
It occurred to me that I could turn around but that thought lacerated me. No. I wanted to get up there so badly. This is what it is about. This is it, my joy. My highest height. I wanted to really mountain bike, not just ride through woods and up the hills near Boston, where I live. I wanted mountains, solitude, silence — and me.
But it hurt so much. And yet, after a while more, I noticed that I was actually pushing hard but not horribly hard. We could even chat a little. “See, some people think at first, ‘Oh, it’s just the placebo of finishing a really hard part,” Brian said, “But it really does get easier at this point.” We stopped for a photo and a breath by a large rock he called Pensive Rock, and he told me to look back at where we’d come. It was so far back, in just a few minutes! The entire Montecito Golf Club was a small flat green rectangle set into the lower mountain.
Brian’s first major landmark was just after we’d done 1,000 feet: two large power lines. This was after about 2.5 miles of climbing. We dismounted and took pictures and he joked about how he sometimes does chin-ups on the bars of the tower. Ha ha. But I’m sure he was not joking. He was young, strong, happy, and on the top of the world, more or less.
But I was with him. I was feeling breathless at this point but in a good way. So proud. In awe of the view, the gentle gray-green of the tree line that fell away beneath us, almost like receding waves. The light metallic purple of the ocean beyond. Purple ocean’s majesty.
We did just a little more, because I wanted the challenge of singletrack riding. “Try to look only at the road ahead, like 20 feet ahead,” Brian coached. That was good advice. Looking only ahead focuses you so that you only plan and you do not look at what’s right under you. You look, you decode the obstacles, you hang on. At this point my tendonitis in my forearm was feeling ominously tight. I knew I was tired but I also felt the crackle of excitement around me so — why not? But the narrow road, the close cliff, and the new boulder-studded path was why not. I stood still to catch a break and just like that, I fell over onto the rocks. A standing fall. I knew this meant I was too tired to do more.
We turned around. Going down the fire road took maybe 15 minutes. The ride down was tough in a different way, the navigating of the road surface through the high speed, trying not to shoot over the edge of the cliff. For the most part, it was okay to ride in the smooth parts right at the side of the mountain, away from the edge. But sometimes the better choice of road was closer to the edge. At those times I opted for the center, to basically bounce right over the rocks. Most of the time this was fine, but you have to be careful when you feather brakes on rocky surfaces; you could end up spinning out your back tire. This happened but only in a minor way. I mostly just kept hurtling downwards, until we finally came to the “chossy” part at the beginning (chossy is a word from 4-wheeling, and it means chossy). I had to do a lot of sharp, tight steering, braking, looking ahead, and quickly planning, but suddenly the road was too fast for my brain, and I crashed. However, I was still standing, so it did not count as a fall.
And it was over. We were back on paved ground, among people, cars, and houses. I had to come down, and get into my life on land again. I was no longer high in the mountains. But — I was still way up high.
I just finished reading Rachel Simon’s The Story of Beautiful Girl, about Lynnie, a young woman with intellectual disabilities who is an inmate in an institution for the “feeble minded,” in the 1970’s, and Homan, a deaf African American older man — also from the institution — who loves her. At the start of the book Lynnie and Homan have run away so that Lynnie could have her baby — a secret they’ve kept from the institution people.The book chronicles their lives through time in the context of Pre-Inclusion America.
I cannot praise Ms. Simon enough for this tour de force. I have not loved a book like this in so long! This is one of those books where you just wish it was not over. The story is riveting and so moving, and really opened my eyes (even more) to the treatment of those with disabilities then and now. There was a great attention to detail, in all the main characters, but especially Homan and Lynnie. They were believable and lovable. They also grew over time, as did other characters — and in a credible way. Simon also did her research in terms of creating the feel and historical background of the period of institutionalization. A humane, loving, and absorbing book, start to finish. Buy Beautiful Girl, read it, love it!
I wrote this more than ten years ago, and it can be found in my first book, Making Peace With Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts. (Trumpeter/Shambhala 2005 and 2006) I am posting it today because it still rings true for me, more or less.
From Making Peace With Autism, Epilogue:
I still find myself wondering, during my dark times, What if Nat woke up one morning to find that he wasn’t autistic any longer? I see us all, gathered around his bed, the site of the miracle, eagerly listening to his every word. He speaks so clearly now, in full, effortless sentences. At last, we understand everything. It’s as if he has woken up from a coma, or a deep, enchanted sleep. He will have to catch up for all the lost time.
We tell him, “And then you did . . . .Why was that?” We have so many questions for him, as he does for us. And now he can tell us all his secrets: “Oh, I hated it when you would try to make me talk to you.”
“Because your words came at me too fast. If anything else was going on, I couldn’t pay attention to whatever you were saying to me. The noise in a room overpowered everything else.”
“What were you saying with the silly talk? What was ‘Feem–sh?’”
“‘Feem’ just made me feel good. It was my word. Because you didn’t know what it meant, you couldn’t talk to me about it or make me talk about it. And ‘ssh’was just that,‘ssh.’ I loved the feel of ‘ssh.’ I loved when people got quiet.”
“Why did you hit? Why did you pinch?”
“I don’t know. I think that with the pinching,my fingers got carried away. It feels good to squeeze. And once I hit, it’s hard to stop.”
And then I have to ask the most important question, “Do you love us?”
“Yeah, but it’s hard understanding all of your emotions.You can laugh, then cry, then sing, all in the same hour. How can
you change moods so fast?”
“Maybe now you’ll see,”Ned says.“What do you want to do now, Nat?”
“I want to meet some girls.”
I wish for a miracle like this so badly that when I really think about it, I can barely breathe. So I close my eyes and let it pass through me. And the more I think about it, the more I come to realize that there are not many fifteen-year-old boys, autistic or not, who actually talk that way to their mothers. Anyway, I do know Nat. I know why he does what he does, the “feem,” the pinching, all of it. All in all, as my father once said, he’s still our Nat.
So I drop my miracle fantasy and open my eyes and go looking for him. There he is, pacing back and forth, living room, hallway, dining room,waiting for his video to rewind, his loud steps reverberating through the house, his hand opening and closing in time with the cadence of his soft silly talk. He notices me immediately, but he keeps moving, probably hoping I will not disturb his comfortable rhythm.
“Hold it, Nat,” I say, stopping him between rooms.
He turns and fixes on me with his wide blue eyes, waiting, silent now. He’s taller than I am these days, but his hair is still bright blond, the same as it was when he was a baby. I say,“I just want a hug.”
Immediately, he leans in toward me, “OK, yes,” he says, so softly it is almost imperceptible.
I kiss his cheek and breathe him in. His long arms are gingerly draped around me, bony and warm.We stand together for a moment, just like that, and my pain recedes, carried away with the tide.
Tonight I attended a debut of the John Block documentary for Autism Speaks, “Sounding the Alarm.” Mass General Lurie Center for Autism hosted. The film was mostly what I expected — a combination of scientists with findings or inquiries, sometimes frightening, sometimes heartening, folded in with examples of families (very difficultly) living with autism, mixed in with Suzanne, Bob, or Katie Wright expressing their own perspective and goals. The movie began and ended with Suzanne, giving the emotional grandmother’s view, sincerely articulating her pain and her hopes for Christian, her grandson. Katie illustrated the mother’s side — articulately, beautifully, and stirring my tears more than once.
I did not, however, expect to be so pleasantly surprised by Bob Wright — I assumed he was going to go for the same emotional tone as his wife and his daughter, (and I am not judging that). But frequently when he spoke, he would be discussing something that had me nodding my head in agreement or at least feeling like he was making a legitimate point. Most of what he talked about is what needs to be done legislatively and in terms of access to healthcare, which is true. He grounded most of his talking points in the most scary kinds of statistics and the most mainstream recommendations, such as when he said, “If you act quickly, there’s like a 50% probability that the child can matriculate from a public HS…” Here he was making the argument for early intervention — who could argue with that — but unfortunately most of his knowledge there was based on ABA as opposed to any other kinds of educational approaches. (cont.)
My digression into a critique on autism techniques and educational approaches:
I’m not against ABA, it has its place, but only if the reinforcement is positive and if the practitioners are respectful of the student. It bothered me, however, that so often the teachers in the film were shown speaking loudly for the child’s attention, redirecting hands-on, while the child sat in a brightly lit room with Meyer-Johnson like symbolic picture cards everywhere.
I think that in Autism 101, educators and anyone working with an autistic person should check for overly bright lights, florescent flickering, jarring contrasts, loud tones of voice before they even begin. They should keep a stash of light colored sunglasses for kids to try out to help shield them from distracting or overstimulating glare from paper or from letters on paper, and for stupid florescent light bulbs. There should be carpeting, perhaps, but only if it is hypoallergenic. Check for weird smells in the room, too. And maybe even consider whether this child requires symbolic pictures at all, or perhaps simply photos of things would do? If an autistic person has difficulty generalizing, why do we want him thinking that people are supposed to be stick figures? Furthermore, the educators in the film by and large seemed not at all interested in figuring out why the child was distracted or not willing to look. I’d like to see more respect paid to sensory issues like eye contact being painful, or finding out why the kid has his hands over his ears? Maybe he should not be approached directly or have a hug demanded of him. My point is, no wonder so many of the children shown in the film were upset; as well-meaning and loving as the parents and staff were, they might have been missing some very important cues from the child. Let the kid chew on stuff if it helps with sensory organization.
Also: consider floortime, and other approaches that aim at connecting with the student from where he is. Don’t be Ableist, don’t assume you have all the answers. Even though you are educated and seasoned in the world, you still have a unique individual in front of you. Respect that.
For God’s sake, this is a neurologically different person, there is no fixing that. Just find ways to connect and work with him.
For me, if all else fails, I ask myself, “What would Nat think of this?”
(Back to Bob Wright and the movie): What I liked best about Bob Wright was his insistence that we engage our legislators in terms of insurance equity for autism treatments and therapies. He said, “The thing that so upsets me is that half the population has coverage through corporations and yet Congress has failed to act on the large corporations or for their own employees in terms of insurance. Congress has yet to move on this issue.” I also liked the way he emphasized the black hole that opens up when many of our guys turn 22 and have to leave school. The film showed Bob testifying in front of Congressmen a number of times, to his credit.
I don’t have notes on who quoted this Harvard study finding, “Lifetime societal cost is 3.2 million per person if they don’t get the treatment they need.” They did not qualify what sorts of challenges each 3.2 million dollar person is facing — are we to assume that every single person on the Spectrum would cost this much to support? That can’t be accurate. This is a typical Autism Speaks strategy, to use numeric data to scare people into taking notice. There’s some truth, in that we definitely do need funding to educate, job train, teach ADL’s to, and support people with disabilities, but there’s a lot of hyperbole, too.
This is not to say that they are wrong. For many many families dealing with autism, they are right: it is a lot of money to buy respite care, therapy, one-to-one ABA for 30-40 hours a week. It is heartbreaking watching a child regress, as Christian Wright apparently did. By 19 months he had lost most of his skills, according to Bob. This certainly is tragic; I do not blame them one bit for expressing their agony and I give them a lot of credit for turning that despair into a multi-million dollar organization that does indeed do a lot of good. In 2013 alone the AS budget for family services was $8million. Sure, I’d like to see that tripled for services but I’m not a Wright. I’m not Wrong either, though.
Later on during the q&A I did make the request that they shift even more of their huge pot to services and housing for adults; after all, the film quoted that 500,000 people would be aging out of the schools in the next ten years. 50,000 a year, in need of supports and jobs. Not to mention housing. So, yes, I think AS is top-heavy in their emphasis on research rather than family services. But I did not found the organization, so I don’t get a vote. And yes, AS spends something like 40% of their revenue on raising awareness with efforts like this movie; but that’s how they make all the money that they then do a lot of good with. I merely urged them to do even more in the supports and services arena.
The worst thing in the movie was the mom who said that she could not trust her son to strangers because “Most days I want to kill him. And I love him. How is someone else going to have the patience?” This is the kind of lurid language that Autism Speaks will use to get donor’s and the public’s attention, but it is very damaging to say this. A lot of people hear this as a way of condoning violence towards autistic people. I know this mom did not mean it that way, but given the violence against autistics in the press lately, it is insensitive if not monstrous and outrageously irresponsible for them to have left that bit in the film. On another level, it is disrespectful to her son to be spoken of in this way.
Okay, well, people have the right to talk about how difficult their kids are. But how about praising all the stuff they can do? There was only one part of the film that showed autistic people succeeding and happy: when they talked about employment. The film showed Andrew D’Eri, a father in Florida who opened a car wash with 35 autistic adults who make up 85% of the staff. His business is thriving. “That makes me feel happy,” he said. Guys like D’Eri make it look easy and natural to just do it, but we all know that starting a business is anything but simple. Several of the autistic workers were asked what they liked about the job, and here are some of their answers:
“Can’t beat the hours, the money”
“Making new friends”
“I was excited when I got the job”
“If I wasn’t working here I’d be sitting at home… I’ve applied to so many jobs and they won’t hire me.”
That last quote had me by the throat. I think the film and maybe even Autism Speaks would be even more successful at getting people’s attention if they were to show more of this positive stuff happening. Isn’t it true that you catch more flies with honey than vinegar? I think that if Autism Speaks could shift out of the catastrophe talk — but not invalidate the parents’ suffering — and move into the success stories, they would have more support in the entire autism community.
So maybe it’s time to evolve out of Alarm and Awareness, and move to Support and Success.
• • •
Here is my latest Cognoscenti column, about the rift in the autism community that can be loosely characterized as being between autism parents and self advocates, or, Autism Speaks vs. Autistic Self Advocacy Network.
I’ve just finished a total of 4 hours interviewing Kate, an autistic woman that I went to college with!! We were roommates for one year. I did not know she was autistic back then, and I was not nice to her back then. In my defense, I was 18 and sheltered. But there is no excuse for unkindness.
Life changes us, right? Things happen. I had my first child and I had to relearn everything I knew about people, about myself. I find, however, that I am still making assumptions and acting on these assumptions about autism. Faulty assumptions. Even my ambivalence about Nat’s stims or his quiet. Kate is showing me that there is value in everyone. It is up to us to discover it.
There is so much room and need for more growth on my part. When I’m having a good day, I can work towards this with my writing. I am trying to make myself a better person than I used to be. I write stuff down so that I can know it better. Maybe some of you learn from it, too. But my first goal is to help Nat and me live better lives.
And so this former college roommate of mine comes along and gives me this gift. She does not seem to hold it against me, the way I was closed to her and not helpful. Even though so many in her life have been this way, she goes on with a sense of humor and deep insight and keeps trying. It is just beyond wonderful that she can now talk about her experiences and we can reconnect in a positive way.
She is helping me with the book, and with becoming a better person. Kate gives me hope that people can continue to grow and evolve (I am referring to Nat, me, and Kate herself). If there’s love and kindness, so much is possible.
Is it splitting hairs to debate what we mean by “autism?” The other night I was at a party where there were many people with autism, and the conversation was around the demonization of autism. The whole thing began with a friend asking me to take a stand on Autism Speaks. I told her that I have some very good friends who work for Autism Speaks. I also have some dear friends who hate Autism Speaks. I have been in both camps. I was on an Autism Speaks subcommittee for a short time, and so back then I thought AS was doing a few good things. Before that, and since, I have heard far more criticisms of AS than positive comments. Mostly I hear that Autism Speaks, primarily Suzanne Wright, the AS co-founder, make some very devastating remarks about autism and completely refuse to see the richer complexity that is autism. She only sees the bad and difficult. She makes no room for the good, the interesting, the difference given to us by autism. The Autism Speaks anti-autism mantra is mostly polarizing and not at all productive. Particularly when we hear that only the tiniest percentage of their take goes to helping people with autism…
What is the complexity I’m referring to? I am going to describe this dichotomy without judgment. My basic (oversimplified) explanation is about the rift between autism parents and autistics themselves. First of all, I need to say that they are often one and the same. You can be both. Perhaps more often than not, autism parents are autistic themselves. But that’s just one point here. The rift is not about that, it’s about recognizing the difficult — sometimes soul-sucking — aspects of caring for an autistic person who has many challenging needs. Usually, autism parents will mean things like their autistic child wears diapers way beyond the usual age, or that they smear feces, or that they are aggressive, or that they are completely out of it, unable to communicate. These parents’ lives are hard and sometimes full of despair. Their autistic children’s lives might be as well — if they are aggressive it is because they are trying to communicate something important, like they are in pain, sick, frustrated, uncomfortably overstimulated, and other reasons that bear exploration.
The autistic adults who can communicate often tell me that yes, they have a disability. More often, though, they describe themselves as having a difference. They use the word “difference” because it does not have the negative baggage of the word disability. It has no implication of disease, illness, or of something being wrong. They do not deny that some parents of autistics have a lot of difficult and painful stuff to deal with in caring for their children. But they deny that this is what autism is.
If you begin to see autism as a neurological difference, rather than a harmful disgusting disability, you start to feel proud of your autism. Or at least accepting of it. Or perhaps you would feel proud if society, Autism Speaks, and the DSM would let you! It’s as if the word has been ruined by society — people like Suzanne Wright — lumping aspects of autism — sensory overload, communication trouble, social deficits — with aspects that can be experienced around autism (like resorting to aggression or fecal smearing or cognitive delay). The autistic adults I have spoken to often feel that it is autism that gives them particular skills, talents, insights that other non-autistics do not have. They say that the difficulties in their lives due to autism are the things they want to change. But they do not blame autism in general. I think people use the words “co-morbid symptoms of autism” in this case.
What’s happening here is not hair-splitting. It is separating out very carefully the aspects of having autism are the parts we would like to improve. But the difference aspects of autism are the parts we should not dismiss, and in many cases, we should illuminate, explore, and honor.
It is true — I hope it is true — that most parents work hard to get their children what they need. But do we sometimes shoot ourselves in the foot with our high standards? I’ve wondered about this for a long time. Back when Nat was still in school and I was a co-chair of the SEPAC (Special Education Parents Advisory Council), I heard a lot from parents about how the supports just weren’t “good enough.” Their child was not progressing the way they thought he should. All the parents nod, understanding, because we, too have often felt that the schools were strapped by the budget and so they could not provide enough of a given service: (ABA in the home, one-to-one with a classroom aide, a particular curriculum, etc.) Because of this mediocre reality, our special needs kids do not evolve to their fullest potential and we wring our hands about it. Rightly so, because we love them and we are their best advocates.
But — we also learn at some point that nothing is perfect, and that we have to negotiate, prioritize, and compromise. In Nat’s case, our school system was generous enough to send him to a very good private ABA school, and I never had to fight for that. But there were several things wrong with this: First, the private school could be very rigid and not always able to do just what he needed, but rather, they would follow their behaviorist dogma instead. Or they were too risk-averse to try something new that I just knew he could do. And finally, I live in a town with an excellent school system and a beautiful neighborhood school where both my younger sons went, and I wanted Nat included. I wanted the school to do whatever it needed to do to make it possible for Nat to go there, but they would not. And I did not want to go to court, and I was happy enough with the private program — it had many good points, too — and so I allowed Nat to follow that particular route.
Nat’s current Day Rehabilitation Program is not necessarily an ideal way for Nat to spend Tuesdays and Thursdays (the days he does not work at the supermarket). In the Day Hab there does seem to be a lot of chaos from all the other developmentally delayed and autistic clients. The whole Day Hab experience is one of fairly low expectations and not a whole lot accomplished. The staffing is sparse. The clients hang out, sit on physio balls, practice posture, do puzzles, work on the computer, work out on the stationary bike. They go out to the nearby park, they go to the Y, they swim. They bring lunch and eat it together in the mall.
You could look at this and say, “I don’t want my adult loved one spending his day like that. So unproductive. Such a big ratio, not enough real attention. How can anyone learn anything that way?” Well, maybe you’re right. But if you take another look, you might not feel that way. For one thing, with ratios of 1:7, your guy has to learn how to get his needs met. He needs to navigate all those other clients, he needs to pay attention, he needs to be able to get the staff’s attention. These are survival skills. That’s not so terrible a thing to spend your afternoon on. Nat works three days a week, and so he has only two days in the chaos of Day Hab, but you could look at his job and say that all he does is walk around a parking lot. But we say that he has a great job, he gets paid minimum wage like any other worker. He has to perform a certain way or he will be fired.
I know of parents of guys like Nat who take them out of the day programs because they don’t want them to work a job that’s beneath them — like cleaning, for example. Others don’t want their guys in a group home like Nat’s because everyone is so “low functioning” and so what would he learn? Those parents believe that there always have to be higher-functioning role models. But what does that mean? What if the other peers can read or talk but they are unfriendly? What if the other peer cannot talk but he makes your guy laugh?
We all have to think about what are our goals for our children and help them get there. We have to fight for the best services. But we also have to be realistic. And, more than anything, we have to try to look at what is given sometimes in a new way. When I start to get dejected about Nat’s life, Ned points this out to me. He reminds me that the average Joe comes home from a job that probably is not the most stimulating thing ever, and he grabs a beer and turns on the TV. Or the average Jane who comes home and surfs the net all night. We spend hours doing all sorts of “unproductive” stuff. We hang out with people who maybe don’t help us grow, but we hang with them anyway.
Life isn’t always about striving to be the best, have the best, do the best. Sometimes we just have to make the best out of what we have.
In writing my new book, I am doing what I always do: I go back in time, to my old writings, to remember and relive. The deep emotions I find in my old stuff is fertile ground for my best writing. I found this post from 7 years ago, and it really made me laugh. This happened when Nat was 17, and though we did not realize it right then, he was experiencing growth in his communication ability that would lead, eventually, to his anger and aggressive outbursts pretty much disappearing from his life. Because of this sudden growth, a space opened up for him where he was able to better understand when something or someone was bothering him, and express it, albeit sometimes in an unusual way. But unusual can be beautiful, as long as no one is getting hurt.
I am reposting it in celebration of the human brain, which never stops developing.
As the boys were all getting ready for bed last night, Nat got antsy again. He started bouncing all around, looking out of windows (presumably checking the status of various lights outside). He ran upstairs with Ned, and followed him into Benji’s room. “Socks,” he said.
Oh, no, I thought. Now he’s after everyone to wear socks. Nat wears socks to bed, but I don’t, Ned doesn’t, Max doesn’t. And I did not know about Benj.
“No, Ben does not have to wear socks,” Ned said.
“Ben will put on socks,” Nat said.
Ben started to put on socks. Ben is a little afraid of Nat. Maybe a lot. That is one of the worst facts in my life.
“Ben, you don’t have to wear socks!” said Ned, gently but firmly.
“I know! I’m going to take them off now!” said Ben. Here’s the other thing: Ben loves to taunt Nat, and get him back for making him so scared. It is a cycle. The Circle of Strife.
“Ben, you shouldn’t tease him,” said Ned. “You don’t have to wear socks, but you shouldn’t tease him.”
“Ben socks,” Nat said.
“He doesn’t have to — ” said Ned.
“HIT!” yelled Nat. “Want to hit!” But he didn’t.
They came downstairs. I don’t know if Ben had his socks on or off, in the end.
Nat said, “Want to hit!”
I smiled. “Natty, that is so good that you are telling me!” I rubbed his back.
Later, when he was in bed, I went in and hugged him and kissed him. “Nat, I am so happy that you said, ‘Want to hit’ but that you didn’t hit! That is so good!“
“Good night, Mommy.”