I read the numbers on R’s assessment from Early Intervention (EI), and in his diagnosis report. I don’t understand why the cognitive numbers are so low. We had expected the low communication score, the low personal-social score. Are they saying he isn’t smart? I’m angry and defensive, worried and sad.
“It’s because he’s just not interested in those things, not because he couldn’t do them if he really wanted to!” I tell my husband indignantly. Still, I feel anxiously spurred to hurry up and choose therapies for him. The psychologist recommended 35 hours per week of ABA therapy, but we have read things about it that make us feel uncomfortable. It sounds like dog training. It sounds harsh and rigid and unkind. It sounds like they will try to change my boy, instead of supporting him. I want to give him tools he needs to thrive, but I have no desire to make him appear NT.
“ABA doesn’t have to be like that,” Clara*, R’s service coordinator and DT, tells me gently. “It can be fun and play-based, and you can decide what the goals are.” Still, I feel skeptical. Our neighbors have a child with Autism too, and I ask her about their ABA program.
“They are teaching her to clap instead of flapping,” my neighbor tells me eagerly, clearly feeling this is an excellent goal.
“Why can’t she flap?” I ask uncomfortably, not wanting to offend but not comprehending how this, of all things, is worth spending hours of therapy on.
“Well it’s okay sometimes, I suppose,” she hedges, “but it’s not appropriate all the time; she needs to be able to do something more socially acceptable.” I smile politely but inside I reaffirm my anti-ABA stance. If this is ABA, it is not for us. My husband agrees. We choose Floortime instead, which we will have to pay for entirely out of pocket, unlike the ABA which would have been completely covered through EI for up to 35 hours per week. We can only afford 90 minutes per week of Floortime. But coupled with the free DT, ST, OT, and therapy-group provided by EI we feel he is getting enough.
It has been nearly 6 months. R is about to turn two. It has been a pleasure to watch him blossom in engagement and interest in his environment. Though eye-contact was never a goal, he has begun looking at us in those moments of perfect connection between us: when we are tickling him, swinging him through the air, blowing raspberries on his belly. In Floortime we have learned not to try and lead an interaction, but to let him lead. We copy him, we join him in whatever he is doing, which is usually stimming, running, or climbing. In DT and ST we have learned to narrate everything. “Up, up, up!” we say as he climbs the stairs. “Down, down, down!” we say as he climbs back down. Where he previously had no interest in toys whatsoever, he now enjoys examining toys that are identical but feature different primary colors. Sets of blocks, or alphabet magnets, stacking rings, and so on are fascinating to him. We discover that his favorite color is blue. He will always hold the blue toy in one hand, while carefully picking up the other colors in turn, examining them and turning them over in his hand. He carries something blue with him at all times. But R has not made any progress in skills that would increase his daily quality of life, and this becomes increasingly worrying. He has no means of communication at all. It is not the lack of language that bothers us. We have seen that there are many ways to communicate, and speech is not necessary. But R doesn’t communicate in any way at all. He seems to think we can read his mind, and becomes very frustrated when we don’t know what he wants. It breaks my heart because I think he thinks we are arbitrarily denying him, when in reality we just have no idea what he wants. He also still seems not to understand anything we say. He will be thirsty and looking everywhere for his water cup, and I will say, “Here’s your water, R, water, water!” as I wave the cup in the air, but he never once glances up. He continues to search where he expects it to be and begins to cry loudly that he cannot find it. I must walk over to him and wave the cup in his line of vision right in front of his face, and then, only then, does R calm and grab the cup.
Besides communication, R also lacks adaptive and cognitive skills that would make his day more comfortable. He cannot remove his own shoes or clothing, or help with dressing. He cannot use a utensil and hates the feeling of wet or messy foods, which limits him to eating only dry finger foods. He cannot open a lid to get to a stored toy or treat. He struggles to understand that things move around and may not be where he expects them to be. He also deals with a lot of anxiety in new places, and we are at a loss to help him learn coping skills. I wonder guiltily if we should have given ABA a chance. We never even tried it before rejecting it.
One day I arrive with R to EI group but no other children show up from his group. The group leader suggests that we join the group in the next room over, which is the drop off group. She tells me there will be no other parents; the children in that group are there with their ABA therapists. Curious, I agree and we move next door. R is the oldest in his parent-child group, being about to turn two. The drop off group is entirely two year olds, so for once he is among children closer to him in age. I sit with R in front of some brightly colored shape sorter shapes. He examines them carefully one by one, except the blue piece of course, which he holds in his left hand. I look around at the other children and am astonished to see them doing so many things that R can’t yet do. One child is playing with a toy barn, moving animal figures around, making the animal sounds. Another child completes a puzzle, another is placing pegs into a peg board. Some are talking to their therapists, others sit at the art table scribbling with crayons and gluing tissue paper. I decide these children must not be Autistic. They must be here because of some other delay. Then I remember the EI therapist mentioning that these children are with their ABA therapists, not parents. I look and see that every single child is with a 1:1 therapist. I ask one of the EI therapists, who has sat beside R and is trying to engage him, “Are those all ABA therapists?”
“Yes,” she says, and tells me the name of the company they are from, which apparently is one of the largest ABA providers to children in my EI catchment area.
“So all these kids have Autism too?” I ask, still trying to deny that this could be true.
“Yes,” she says. And to my intense mortification, I promptly burst into tears. It is the first time I have cried since or about R’s diagnosis.
When I get ahold of myself the EI therapist is saying comforting things, asking about our therapies, trying to be helpful. I explain why we aren’t doing ABA, how conflicted I have come to feel about whether we are making the right choices or not. All I want is to do right by him, but I feel I am stumbling around in the dark, winging it. She suggests I sit and observe the ABA therapists in the room, and consider that perhaps it isn’t what I thought it was. I do. I sit for those two hours and watch. The ABA therapists do not seem very different from my Floortime therapist. They are cheerful, kind, and playful. Nowhere is the villainous creature my mind had conjured based on stories I had read about abusive, old-school ABA. I go home and have a long talk with my husband. The next day we call the ABA company that the therapists I observed work for. We tell each other it won’t hurt to try, that as soon as we see something we are uncomfortable with we can stop. We decide to take a chance.
*name changed to protect her privacy
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