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The Burden of Proof

By Estée Klar; originally posted on the blog The Joy of Autism, now archived here.

Adam and I have been busy. He’s typing out more sentences and we’re talking a lot about how he feels about things (as opposed to the barrage of questions about what he knows which is a very ABA way of questioning children). Even though I know Adam has a lot to say, there is always more than what I think I know, which is why parenting is humbling experience. Adam likes Van Gogh’s “spots” (referring to pointillism) he said to me yesterday. Then, in writing on a keyboard later he said, “I like the ocein,” when I asked him what he liked about Florida. Even though a parent can intuitively KNOW one’s non verbal or quasi verbal child is intelligent, I think we can’t really know what lies within anyone until it is expressed. I am not saying do not assume a person is intelligent or that they are not communicating without words – we know that communication is more than words. It’s just that words and symbols are very powerful.

These moments of clarity, punctuate my belief that to really know one’s child is an act of guidance and then ultimately in letting-go. We just do not know, therefore we must be very aware of our own limits in thinking about things. It is why we have the phrase “make the least dangerous assumption.” It is why I believe that our children are so incredibly awesome. It is, if I were to talk esoterically about knowledge, the difference between creating changeable frameworks that we apply to all kinds of things for our own understanding, versus realizing that nature and humanity cannot be framed. Every time we try, the picture shifts. So imagine the most amazing things!

So now I am going to explain how I felt when I took Adam to a popular horse-back riding program here in Toronto for kids with special needs (not the subsidized one so I’ll keep you guessing). Adam, who is averse right now to putting on things around his ears, had a riding helmet thrown on his head as soon as we arrived in a big barn on a cold day. A big strange guy came up (we’re talking on his first day), and threw him onto a white horse, without even introducing himself. Whoa! I expected them to introduce Adam to the horse, let me come along for the walk, get used to the helmet. I did not even expect that Adam would be on the horse the first day!!

“We know what we’re doing, ” the big-guy said to me, trying to reassure me. “Don’t worry,” his partner joined him from the side as Adam was swiped away from me high on the horse’s back. “We work with autistic kids every day.” That was a red flag. I felt my innards tense. Anyone who says that “they know what they’re doing”…be forewarned. It is the reason I am writing this post. None of us knows a child that well.

Adam cried and cried and cried. “I want to go…I don’t want to!” he bellowed as they said “touch your legs.” And he did — in the midst of crying, his little round face all red, his eyes tired of not being listened to, yet responding to them obediently in hopes that they would finally listen to him.

“Say, ‘move on Snowman,'” they asked. He would have said anything to get them to let him off the horse. His little voice was becoming raw, and still so small and fragile. “Move on Snowman,” he said between gasps of mucous-filled air.

Now I’m getting pissed (with myself and the situation), while hoping that maybe he might calm down and begin to enjoy himself. I am putting on a fake smile, waving at him, trying to reassure him that I’m right there at the end of the long barn. I am feeling pressured from our old ABA days that I’ll be judged for wanting Adam off the horse, and am distressed at my uncertainty at this point of what to do. I hate those stares I get from instructors that I am just the mom and they are the “experts.” There are some of you out there that I’m sure will know what I mean! How terribly arrogant those stares can become.

“Is your child high or low functioning?” asks one dad as he approaches me while I am absorbed with Adam and his safety. I feel like I’m on the wrong planet, in the wrong place. Is it worth it to go on a diatribe how there’s really no such thing as I listen to his feet squishing towards me in the mud. Do I need to justify Adam’s intelligence despite the fact he is autistic? I move away and end up responding with little interest, “I don’t think of him that way,” and leave it at that. The dad looks confused as I leave him in the muck infused with the scent of horse.

I mumble in hopes that the parents who tried to also reassure me: “Yes, we remember when our kids cried in ABA,” would hear me as I said aloud to myself, “They don’t respect him. He is saying he wants to go.” Yes, I am doing it on purpose, but also because I am feeling under attack. I move away and focus on my Adam some more, sucking in the air between my teeth, pondering my next move, feeling their eyes on me, then back to their own children. I watch the other kids as they obediently follow directions. Yet, I don’t want Adam to just follow directions. I am proud, actually, that he remains upset and tells them that “he doesn’t want to.” I am not happy he is upset, but at least it is human. His will has not yet been broken.

“Can I get him off, please?” I ask the two ‘instructors,’ not realizing that this was an ABA horseback riding program. At least it wasn’t stated on their website. They look at me as if my intervention will blow their break-the-kid’s-will-and-they-will-begin-to-enjoy-it approach to obedience. I pull Adam off the horse and also take the helmet off that has been visibly bothering him through the entire ride. His pants were bothering him and the instructors didn’t help him out or even acknowledge his discomfort. “Walk on Snowman,” and “touch your legs,” seemed top of their agenda. Adam’s responses pleased the instructors. After all, isn’t much of the purpose of intervention to please the adults who do it? (Pause for self-reflection).

“Calm down Adam.” I crouch to his level and pat stroke his head, being very quiet. He stops crying immediately. “Let’s look at Snowman together.” I pat Snowman, I wear the helmet. Adam is watching me. “Do you think you can try again?” He pulls away, but I ask him to give it another try. We are not the giving-up kind of folk. He tires of crying as he whimpers, still very unhappy. We finish quickly after that.

“Many of our kids cry like that and eventually they get so tired of crying they begin to enjoy it,” says the big-guy who has decided to follow us to the car. Adam’s hands feel like ice and I am anxious to get him warm again. I am trying to give the “go away,” body language. “Uh huh,” I say un-enthused. I want to attend to Adam whose eyes are still red and watery.

It just may be that the kids learn to enjoy it — the big-guy might be right. In fact, I don’t doubt it. Yet, if Adam had been given time and patience, he may have gotten on that horse willingly as I have put him on ponies many times before. Adam loves so many things and he is usually not averse to new experiences.

But when I was EXACTLY Adam’s age, my dad also put me on a great big horse and I freaked out. BECAUSE I COULD SPEAK AND WASN’T LABELED AUTISTIC, he took me right off and respected my desire to have nothing to do with horses for a while. I may have gotten used to it if someone forced me. But forcing wasn’t the point. Forcing Adam has never worked for him (or me for that matter). Patient introduction and persuasion helps us get through the fear-factor. With myself as a child, I eventually wanted to do it on my own. I have a healthy respect for horses and don’t ride them often.

You see, I wanted Adam also to enjoy himself. We get sick and tired of therapy. Everything for disabled and autistic kids is “therapy.” You can’t find ONE program — be it a music teacher or anything unless it is labeled as “therapy” therefore “making the child better” [than they are]. We are not looking for therapy anymore and I hope there are clinicians and professionals reading this in order to be hired as teachers, not therapists — people who can open up new worlds and help with filling in gaps where we need extra help, and hopefully who have fun engaging with Adam. We are looking for equal opportunity to learn and be a part of many programs. We are looking for a chance to learn new things. Adam wants to be with other kids. We are looking for people with patience and maybe some understanding of the nature of autism and an understanding of how Adam might be good at learning these new things.

Because he’s autistic, and I have to assume this as I did not see evidence to the contrary, those instructors ignored his requests, they didn’t give him a break until I intervened, nor did they understand Adam’s NEED, be it because of autism or not, to be gently introduced to the idea of riding horses.

Finally, I am upset that ANY therapist has such control over us as parents — that they make us feel unsure about our parenting. It is particularly so right now in our autism community. Those seeds of doubt must exist in every parent. Be it from teachers and other people in positions of authority telling us parents what our kids should be doing and how they should be doing it — parents need to have greater confidence in the way they want to parent no matter what kind of child they have. This might be even more important for parents with special needs children to assert these needs and desires.

In autism, and I introduce this sentence as such because that’s what I am on the journey with, there is a difference between teaching skills and letting a child know their value and enabling expression. One cannot exist in isolation of the other, yet too often the focus is always on teaching skills. So here I was, standing there, letting my gut wrench primarily because I didn’t realize that the “we know what we’re doing” people were practicing ABA. And if they didn’t do it knowingly, they did it anyway. They assumed that Adam should comply with their requests, to prove and show what he knows. Some might call compliance a form of skill-teaching or a basis from which to learn new skills. This program wasn’t about enjoyment. It was about obedience. Adam had to prove himself in an environment that expected little of him, with people who cared nothing of him, and who thought that they knew everything there was to know [probably] about autistic children. That is the world that we are creating for autistic people, folks — a place where all of Adam’s energy must be placed on proving his value and his intelligence, not enabling and valuing his expression, or letting him move on in life without the burden of proof.

Needless to say, we won’t be back there. Who knows if they have truly created a horse-aversion for the rest of Adam’s life. Yet, we will try again another time, if Adam wants. Some experiences we try end up being terrific. We try regular programs, “special” programs — some are good and others not. Yet, I have to say, I am grateful that Adam does not go to an autism school, at least here in Toronto. I would fear that he would always be so incredibly underestimated.

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