Too Much of a Good Thing

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My sweet son licks everything.  Well, everything except food.  My little love, who only eats 3 different foods, licks absolutely every other surface.  The furniture, the walls, the rug.  Escalator steps are a big favorite, and we were once informed by confused mall security that going up and down the escalator over and over while carefully pausing to lick each step was, in fact, not permitted.  My favorite is when he licks my face, which is his version of giving a kiss.  His BCBA once commented “we can shape that,” meaning teach him to turn it into a regular kiss instead of licking, and I thought: Not gonna happen; I love my boy’s kisses.  My standard response when strangers comment on the licking is to smile and say that he’s building an immune system.  This certainly seems to be true, as R is rarely ever sick and hasn’t required antibiotics since he was a baby.

These days, R especially enjoys going outside to lick the driveway, the road, and a series of large, decorative boulders that line our street.  I can see that this brings him joy and helps him meet a sensory need.  I cannot help but smile when I see how his face lights up, how he runs to those special spots- knowing exactly where he wants to lick.  I love his giggle when he finishes licking one spot and moves on to the next.  I love how he dashes from boulder to boulder along our street, arms and legs bouncing with excitement, jumping on his toes and down again.  But today, as I followed him through this ritual, I noticed that there was some blood on his face.  Alarmed, I pulled him over to me to check.  I saw that his tongue was bleeding.  He was unbothered by this, eager to get out of my hold and continue to the next boulder.  But it was like a little stab in my heart to see that this thing he loves so much was making him bleed.  I don’t want to prevent him doing these things he is so  compelled to do, these things that he takes such pleasure in, but I don’t want to let him lick his tongue raw and bleeding either.  This is the hard part.  Helping him find safe limits while honoring his genuine need to seek out these sensations and use them to self-regulate.

Therapies

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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

In The Tunnels

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Image by Tom Blackwell* 

I have always been claustrophobic, for as far back as I can remember.  When I was a child I was not able to reason through it as an adult can, so it was particularly painful back then.  Something as simple as being in a room with a closed door was terrifying.  We moved around a lot, and the first thing I did whenever I got my room at a new house was to plan out my escape route in the event that I got stuck in the room.  Planning how I would get out– through the window, from the window to the roof to my parent’s balcony, from there down the drainpipe to the ground– was a ritual that allowed me to feel safe in my own room.

We lived in Europe growing up.  One year, when I was 11 years old, my class took a trip to visit the old underground mines in a nearby mountain where, hundreds of years ago, miners had constructed a maze of tunnels beneath the earth.  We had to take an elevator down to the start of the tunnels, and it felt like we were going miles underground.  My fear was squeezing me tight before we even got off the elevator.  When we arrived, our teachers explained that much of the tunnel we were going to go through was too small for an adult to fit through.  The miners of so long ago had much smaller bodies than today’s adults.  We were told to follow the tunnel through to the end where the teachers would be waiting for us.  In America I don’t think this kind of field trip could ever happen, but in this particular country** it was no big deal.  I had no choice but to follow my classmates into the tunnel.  I’ve been through a lot of things in my life, but I don’t think I have ever been as scared before or since that trip through the mines.  The tunnels were so tight that in places we had to crawl and could not stand upright.  I cried silently and prayed over and over to myself, promising God anything, anything, to make it end.  Somehow it finally did.  I don’t remember much after that.  Mostly I remember the crushing fear and anxiety of being forced to face my claustrophobia in the worst way.

I think that a lot of people don’t understand what it really means to face crippling anxiety.  Someone asked me recently what it feels like for my young Autistic son.  I see them perplexed by his anxiety to things that seem harmless to them.  I couldn’t think of a good answer at the time; I’m not even sure what I said.  But on my way home I remembered the mines.  I think it must be like that.  My son is the bravest person I know.  He has to enter those tunnels every single day.  He is not able to tell me yet exactly what it feels like for him, but I think of it like this now, because I know what it is like to be afraid of something other people don’t understand.

*image by TJBlackwell see more of his beautiful photographs here

**I’ve chosen not to name the country where I grew up to protect my privacy.

Diagnosis

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R, shortly after his diagnosis at 18 months*

The psychologist has laid out an impressive array of toys across the office space: on a child sized table, on the floor, and more toys in a bin.  I smile awkwardly, not wanting to disappoint her efforts, but knowing that R won’t care for any of them.  R doesn’t play with toys.  She smiles warmly at him and gets down on his level to say hello.  He ignores her and the toys, and begins climbing the two chairs pulled up to her desk.  “He loves to climb,” I say.  She tells me we can finish some of the parent report questions she has while R settles in, and then she will start the assessment with him.  She asks me a series of questions- does he recognize himself in a mirror?  Can he stack 3 blocks?  Does he understand the word “no”?  Can he follow a one-step direction?  No, I answer, no, again and again and again.  

She sits on the floor next to R, who is clutching a pen he found on her desk and mouthing it.  She tries to interest him in several toys but he ignores all her attempts.  She decides to try using the pen, since it is the only thing he seems interested in.  She take the pen from him and he bursts into tears.  “Look R, can you find the pen?”  She hides it under a cloth.  Still crying he throws the cloth off and grabs the pen back, then settles down.  She tries again, this time hiding it in a clear box that you must reach into from the side.  R doesn’t know what to do and cries until we give him the pen back.  She brings him blocks, showing him to stack one on top of another.  He wanders away.  She shows him a small mirror, which he turns over in his hand and mouths.  She brings out an infant shape puzzle consisting of two knobbed shapes and the board where they fit.  He puts the knob in his mouth but will not engage the puzzle beyond that.  And on it goes.  She brings out a wind up toy, she blows up a balloon, but he ignores all of this.  Instead he mouths his pen and wanders the room.  More than 2 hours pass in this way.  Finally she brings out bubbles and begins blowing them.  This is something that truly interests him.  He steps closer to her, eyes locked on the bubbles as they float toward him.  He is fascinated, watching wide-eyed, though he doesn’t try to reach out and touch the bubbles.  She stops, pauses, and waits expectantly.  Later she explains that she wanted to see if he would indicate a request for more in some way- whether by eye gaze, vocalization, or gesture.  He waits too, and when he realizes she isn’t blowing any more bubbles, he bursts into tears with that heart-wrenching, hurt-feelings cry.  I scoop him up and whisper soothing things in his ear, rub his back.  The psychologist tells me she has enough, we can finish.  She tells us to sit and relax while she writes a few things up.  My husband and I glance at each other, silently wondering if we are going to have the result right now.  R is restless so my husband begins tickling him and blowing raspberries on his belly.  He laughs hysterically, an enormous grin stretching his little mouth, adorable dimples popping into view.  Relief settles over me, this is my boy, this is exactly him, this is right.  Forget the puzzles and blocks, the words and gestures.  Him getting tickled, him laughing, this is my son.  The psychologist comes over to sit with us, hands folded in her lap.  She tells us our son has Autism.  She goes over the assessments, explaining what she had been doing, what each part was looking for.  Though we had been sure when we walked into the office that morning that this would be the result, it still seems unreal somehow.  We ask inarticulate questions.  We don’t know exactly what we are trying to ask.  I think we just want to know if he will be okay.  We ask if it’s mild, moderate, severe?  She hesitates then says “Moderate to severe right now, but that can change.  He is very young.”  We leave with a diagnosis letter, the promise of a full report in the mail, and the instructions to start therapies and return in a year to check his progress.  

*Photo by Saeideh Golji

Early months

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He wiggles his fingers in front of his eyes while rotating his wrist back and forth.  He’s been doing it since he was 6 weeks old, perhaps younger.  We love that it is so “him;” one of the many little things he does that our other children never did, that we never see our friends’ babies doing.  He’s so unique, we say.  He’s our quirky guy.  He is 6 months old.

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He deliberately bumps his forehead against the wall then rubs it down the wall.  He does this over and over.  It makes loud buh-bump-buh-bump-buh-bump noises.  At first I am alarmed.  “What are you doing, buddy?  Be gentle!”  He doesn’t react to my voice at all.  I wonder again if he might be deaf.  We never had the newborn hearing screening done.  I copy him, bumping my head against the wall pretty hard, then dragging it down.  It doesn’t hurt, so I figure it must be ok for him to do.  He continues and it strikes me how funny he looks doing it.  I giggle and pull out my cell phone to record him.  I take a few minutes of video, giggling at his quirky antics.  He is 9 months old.

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He holds a tinker toy rod in his fist before accidentally dropping it.  He goes to pick it up again but becomes distracted by the sight of his own hand.  He changes course mid reach, slowly bringing his hand in front of his face and watching his fingers move.  He moves his hand up beside his temple and opens and closes his hand over and over while he watches in his peripheral vision.  The nurse calls our name.  In the exam room the doctor begins describing the developmental milestones expected for this age.  I tune her out, having done this with 2 other kids before and expecting, as always, that it is a bunch of “yes, yes, yes”s I need to confirm so we can get to the good part- the physical exam and seeing his growth chart.  At first I say “yes” several times before my brain realizes that there have been at least 3 that I automatically said “yes” to that were actually “no’s”.  I don’t tell the doctor, but flustered, I start paying more attention, and say no to over half of the remaining questions.  I ask the doctor if that is still normal, and she assures me that every child develops at their own rate.  I put it out of my head.  He is 12 months old.

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“Here’s what we will do,” I say. “You take him in the other room and I will start his video at the lowest volume.  I’ll gradually add volume.  You watch to see if he notices the sound.”

“Okay,” my husband agrees.  “Let’s do it.”  We do.  As soon as I increase the volume to a level that would be audible from outside the room, R runs in, bee lining for the computer where his video plays, a huge smile on his face.  

“He’s not deaf then,” I announce uncertainly.  I wonder why he doesn’t respond to his name or look at us when we are loudly trying to get his attention.  I google “autism,” but quickly close the page.  My son couldn’t have Autism.  Stuff like that happens to other people.  We are just your average boring family.  I tell myself it is probably a 3rd child thing.  He is 15 months old.  

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I can’t ignore that something is different any longer.  I look at R, who is putting the tinker toy rod piece through the circle piece over and over.  This is his only play.  He does not play with any toys at all, except these two tinker toy pieces, which he must always be holding, and with which he performs the same action on repeat.  He doesn’t have any words.  He doesn’t point or follow a point.  He doesn’t wave or clap.  He has stopped making any eye contact at all.  He doesn’t understand anything we say to him, and he doesn’t respond to vigorous attempts to get his attention.  He doesn’t seek us out for help or play.  If he wants something he stares fixedly at it, never looking from the item to us to let us know what he wants.  If he can’t get something he wants he just cries, never trying to get our help first.  He does not bring us things or show us things.  Unlike our friends with a child the same age, we have not had to baby-proof at all.  R doesn’t get into anything.  He has no interest in opening cabinets or drawers, taking or dumping things, exploring toys or objects.  He does none of that.  He will sit and trace the bolts on the cabinet with his finger, but never open the cabinet.  Instead of playing he does things like scratch textures- the upholstery, blankets, sheets, the rug.  He still wiggles his fingers in front of his eyes all the time, and does several other strange hand movements.  He is very fascinated by his hands.  Autism, a voice whispers in my mind.  No, I think, it can’t be, because despite everything else he is very attached to me, very sweet and cuddly, loves to be held and hugged by me.  He giggles and laughs all the time.  I’ve heard kids with Autism are detached and aloof, that they don’t like to be touched (this, I will later learn, is a common myth).  Still, I begin googling in earnest.  I come across the M-CHAT, an Autism screening for young toddlers between 16 and 30 months of age.  He scores a 17 out of 20, 20 being the highest possible risk score.  The webpage advises that he is at “very high risk” and should be assessed immediately.  I call his doctor.  He is 17 months old.