Autism Awareness

How I got some.

In 1996, I answered a classified ad looking for someone to work with a child with learning disabilities, part-time, at his house. That sounded good! I was finishing my degree, needed part-time work, and had a pretty specific skill-set that included “helping kids with learning disabilities.” When I showed up to the interview, I inquired, “What is Robbie’s* learning disability?” His mother answered, “He has autism.” I laughed and said, “Well, that’s a big one!” No laugh. Probably not funny. But I got the job. (*His name was not really Robbie.)

It’s early in an article to have an aside, but here we are. Later, once I knew Robbie’s family pretty well, I decided another joke was appropriate. It was not. “Can I tell you a joke?” I asked his mom, and got the mandatory affirmative response. Here it is:

A woman gives birth to a little boy. He is healthy, but over time turns out to be quite late in developing speech. They take him to all the doctors, have all the tests, but nothing wrong is found. He should be able to talk – but he just doesn’t. Eventually they accept this aspect of their son, and he just becomes The Kid Who Doesn’t Talk. Years go by. He’s five years old, and as the family eats their dinner, all are shocked to hear him speak. In perfect English, he says: “These potatoes are cold.”

The family are stunned, staring. The mother finally asks him, “You’ve never spoken before! Why have you never said anything before now???”

And the little boy responds: “Up until now, everything has been fine.”

No laugh. Probably not funny. Whatever.

The ad saying “learning disabled” instead of “autism” was indicative of the era; euphemisms were important. I’ve worked with tons of kids whose parents gave misleading information out of fear: prejudice was widespread and shame was equally prevalent. As I’ve mentioned before, the diagnosis of “learning disabled” was the good one, the one that implied hope for the future, and people want that. Fair enough. I’ve also mentioned that the differences between learning issues matter only a little to me, and only in terms of making calls about program delivery and strategies.

Behaviour Modification

I wasn’t the only hire: a bunch of people were in attendance, and it turned out not to be an interview, but a presentation about the actual job: a team of six or seven students would work with a four-year-old boy with autism, employing a program overseen by a woman with a master of social work. It would involve “discrete trial training” by a team of other people, with weekly evening meetings to coordinate and discuss our work.

Here is what we were to do: spend an hour or two with Robbie twice a day, and in organized sessions (five minutes each) between play, try to teach him to say words and do stuff; I barely remember, to be honest. I recall that he loved sliced ham, and we were trying to teach him to say “ham” when he wanted some ham. I would sit him down in a little chair and kneel on the floor across from him, hold up a tiny square of ham, and go, “Robbie, say ham!” If he said “ham,” I’d give him the little piece of ham. If he didn’t, I’d give zero reaction. (That was amazing training: removing negative reaction and leaving just positive responses is a still cornerstone of my teaching.) We had to track his successes and failures on a little chart. The MSW person would look for progress and make charts and at the weekly meetings, we’d discuss how we were all doing.

There is a similar – but terrible – program called Applied Behavioural Analysis (ABA) that is controversial, as it is used for shallow, shitty, social-parental ends and uses negative reinforcement to stop autistic behaviours (e.g., stimming, flapping); it seems basically cosmetic. Amythest Schaber’s video below explains it well.

When I encountered Robbie’s program, it was new to me, and I certainly tried to do the job properly. While it was similar to ABA, it did not have the negative aspects. I wonder if our program was a more enlightened approach designed by the MSW, or at the direction of the parents. Robbie’s program was, to my memory, on the level. There was zero negative feedback, it was gentle and balanced, and was entirely about enabling communication, not “being normal” or whatever. That fits with my memory of the family: they were great, and they loved him as he was, and that was encouraged with us, too.

It was a shockingly expensive program, privately funded. I would work very briefly with other families under the same MSW, but I loathed the way they treated their kids and quit, fast. I kept working with Robbie for about a year and a half (until I moved to a different city for teachers’ college), but I delivered the MSW’s program for maybe three months.

What Are Words, Really?

I couldn’t do it. I couldn’t make Robbie sit and say things ten times, in sets, over two hours. I couldn’t not interact with him in a real way – if he was happily playing with me, I wasn’t able to stop and kill that interaction in favour of the “ham” tests. Over a short period of time, Robbie and I fell a bit in love with each other: he was always happy when I showed up, and he loved to show me what he was doing and involve me in his play, whether that was playing with Thomas the Tank Engine trains or shredding paper really close to his face (his favourite stim). He loved to wrestle with me, loved to be spun around in a spinny chair, loved to run around in the yard and holler at the top of his lungs.

He liked to gaze into my face (not my eyes) and scratch my chin stubble. He’d grab my hand and lead me around the house to various activities. How is this not better than teaching him tricks, I thought? Eventually I had to fess up to his mom, with whom I got along: we’re not doing much of the program, I told her. I feel like we’re connecting, and isn’t that what we’re really looking for? She was into it, and hired me for more shifts that became more like playdates. We’d go for walks, take subway rides (more on that below), and play.

He freed me in important ways. He loved to yell: he’d yell and either spin or wave his hands in front of his ears to modulate the sound, and when we wrestled, he would growl and roar with delight. I had always been a quiet person, a mumbler even, striving to be inoffensive and unobtrusive, but Robbie taught me to yell and roar with delight. He changed the way I use my voice, including in singing: he liked when I sang, so I sang to him all the time. I still sing in the hallways, and sometimes bug my students by singing to them as they come in (often Mister Rogers songs). It’s fun for me, but I’m trying to model exuberance and free-spiritedness, which are the things Robbie gave me.

He looked like he could have been my son, and on one adventure on the subway during which he pissed his pants (and mine) and hollered exuberantly into the subway window as he slammed his hands on it, I could tell that the other passengers were looking at me and thinking, “What a shit father.” It was another great lesson: after a decade of easily feeling embarrassed, he undid that, and I am still very hard to embarrass. He was having fun. He loved trains. He liked hollering. Nothing else mattered much. I knew where I was and what I was doing, and I learned that it’s hard to feel embarrassed by something you’re doing deliberately.

I had to confess to not running the program in our team meeting at some point. The MSW was pissed, but I had the parental blessing and was learning much from hanging with him. When he played with Thomas trains or watched Thomas & Friends, I realized that he had his own word for the star train: a back-of-the-throat, super-soft coughing sound. It was the sound of a steam train, and I reported this excitedly to the team. “He has a word!” I said. “He uses it reliably to mean one character, uses it to ask for the show, uses it while he plays with the train!”

Nobody was as excited by this as I was – I suppose because it was an unexpected result, and not one that came out of the program. But I knew it was something: it was how he talked, so far. How could we not accept his communication offering? At some point I stopped going to the team meetings, but I kept working with him my own way until I left for teachers’ college. It was a really great relationship, and fully indicative of the future of my career. I’m not a team player. I’m for the kid. I don’t care if he says “ham” on command. I want him to enjoy being alive, and to help other people accept his way of being.

Autism, Unseen

I have worked with lots of autistic people over my working life. I’m pretty sure my father’s on the spectrum, pretty sure that knowing this could have changed our whole family story for the better. It seems to me that in the recent past, people on that spectrum were either forced to “pass,” or to be strange wierdos/nerds, or to just suffer. Guys like my father did “fine”: they were supposed to work and provide and leave the soft skills to their wives, who were sadly gaslit and alone with the strange emotional situation of being married to a robot. The backing of patriarchy allowed these men to simply ignore their weaknesses in empathy and emotionality, to follow their hard-headed certainty and never wonder about it. And the less-capable of passing – the “weirdos” with odd habits and interests – passed in their own way, in comic stores and writing reviews of rock bands and collecting stamps and trainspotting. The Robbies of that recent-past – who learned to speak too late if ever, or who loved the modulations of their own yawps more than they loved trying to talk with their siblings – would be seen as and then treated as broken, eventually homebound or institutionalized, depending on sheer luck/unluck. It’s heartbreaking to think about.

Respect Might Equal Not Bothering People, Sometimes

The school I work at has a remarkable, subtly genius approach that combines full inclusion in classes AND full acceptance of students being themselves. Mostly what we do is offer (a) reliable kindness and warmth, (b) opportunities for engagement and involvement and expression, and (c) time. I’ve watched child after child move from totally mute and separated to whatever version of “integrated” they wish for, from stimming solo in the schoolyard to class clown/student council/lead in the play. Much of that recipe for success is about having the humility to trust the student to run their own life and the courage to be openly accepting as a model for the rest of the student body. Without pressure to “not stim” or to “make eye contact” or to say “ham” when required, I’ve seen student after student gradually open up and join in. I’ll go out on a limb and hazard a guess that we should simply stop bothering kids on the spectrum, we should just allow them to be themselves in a safe and unconditionally welcoming place. Maybe at least START there.

Controversy

Autism Speaks, the biggest organization that advocates the ABA approach, has been referred to as a hate group by people I know, and clearly wishes for autism to not exist. We’ve seen this parents vs. kids dynamic with other groups: deaf communities who feel they lose something when cochlear implants “save” people from deafness, and people with Down’s syndrome who fear the eugenics of rejecting fetuses with Down’s. While I myself hated Robbie’s modified ABA training, I’ve also met autistic kids who credit that program with saving their lives, who speak to crowds about its positive impact. I can’t judge any of these in any real way: life is too complicated for that. But I know for myself that what seems to work best is to allow people to be themselves as much as possible, and that will be my mode forever. And I can say with confidence, if your main concern for your autistic child is table manners, you probably suck.

Looking at their site, Autism Speaks seems to have heard and responded reasonably to their detractors’ criticisms. I have no insight into whether this is enough, but it is good to see. I will still look to autistic-led organizations for guidance.

Respect Always Equals Listening to People

Now that enough time has passed, and the children with autism who were supported (and not punished or ignored or institutionalized) have grown up, we have spokespeople who can share what they know from the inside. Some of my former students, and some of my current students, guide me and tell me what I need to know. As I’ve said in other pieces, this isn’t a monolithic group, it’s a group of humans – which means that each experience I listen to and try to understand is a tool in the kit that might be useful. It might also NOT be useful: in that case I’ll listen to the next person, and do what they ask for or require. I love the Ask an Autistic YouTube channel – I don’t know if it’s still updated, but it’s a treasure trove. Go watch and listen: Amythest Schaber is awesome. So are my students.

Robbie and I helped and healed and taught each other, and we did most of that teaching just by being together intently. It wasn’t an equal relationship – I was the adult, and he needed me to help him. But this is how I see things, fundamentally: the adult, the helper, can either serve adult society, with its hangups and imagination limitations, or serve the children in their care, which will demand and encourage actual love. I pick the second.

I never said goodbye to him. At that point in my career, I had real trouble separating my heart from my job, and it broke my heart to leave Robbie. (This was long before social media and “keeping in touch” easily.) I visited him one last time, but I couldn’t tell him anything like “I’ll come visit” or “You won’t see me for a while” because those words didn’t mean anything to him yet. I cried on the way home, and remembering it makes me tear up now, almost 30 years later. I didn’t ever go back and visit, despite loving him and his family, because I didn’t know how to do that and not keep going. I looked him up at some point, when he was about 20, and he’d won a Special Olympics downhill skiing event. I was so proud.

I don’t know if he, like that student of mine, would look back on his ABA time with gratitude, or if like another student, he considered it torture. But I am confident that if he remembers his time with me, he remembers it happily. Eventually I got used to letting my students go, and have come to look forward to it, most of the time. There is a flow to helping and letting go. But my favourite and happiest moments were the ones where I was fully and truly present and invested and helping, and many of those moments were with him.

Wherever you are, 30-something Robbie, I hope you are happy. It really is all that matters. I miss you, and I’m grateful to you, and you live in my heart. Thanks for everything.

Peace out,

jep

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About the Concerns With Autism Speaks