Navigating Autism Services Part 1: The Weird World of Applied Behavioral Analysis

   

As soon as you get a diagnosis of Autism you will begin hearing the term ABA, short for Applied Behavioral Analysis. ABA is the treatment/therapy for autism that has the highest rate of documented efficacy. That just means it’s the only thing that’s been proven to help. And the earlier

the ABA therapy begins and the more hours of therapy the child receives the better it works. Earlier and more = better lifelong outcomes. Because of this fact which the medical and autism community knows, ABA, an utterly foreign and seemingly bizarre therapy gets pushed really aggressively on parents at a time when they are disoriented, likely ignorant (as I was) and likely ferociously protective (as I was) of their newly diagnosed child. Parents at this stage have probably read online about diet solutions, probiotics, all kinds of medical and “curative” stuff and they likely want to pursue these strategies (nothin’ wrong with it), but the doctors and therapists sort of slap their hands and say, “NO! This obscure thing called ABA! Lots of it, immediately!” And all the while the clock is audibly ticking to help your child for the rest of their lives. It’s an anxiety inducing situation.

So I’m writing this little piece about ABA as a parent to a parent (because doctor’s, in my experience, mostly suck at communicating with parents and are mostly clueless about autism) having been through it and seen the good and the bad and having come out the other side with really amazing outcomes that I would want for every parent who receives an autism diagnosis. There are some important things to know, though, that can help you navigate ABA quickly and successfully.

First, what is ABA? I could go on for a long time, but suffice it to say that ABA is a method of changing behavior by rewarding the behaviors we want to see more of, with the ultimate goal of rerouting the circuitry of the brain so that those more adaptive behaviors become natural to the child. What I didn’t realize at the time, is that this is how all of us learn already. Babies jerk their little limbs around and put things in their mouths specifically for the opportunity to have a rewarding sensory experience, which they will then repeat. When a baby jerks its crazy little arms and hits a bobbly-doo on a mobile, there is a dazzling flash of color, perhaps a little tinkle of bells, or the crunch crunch of that weird crunchy material they make baby stuff out of, and these fantastic rewards get the baby to reach out and explore their world, so more learning can happen. When a baby’s face spasms into an approximation of a smile, all the adults in the room go nuts and start smiling and cooing, and baby learns to do more of that.

Now I know a flood of counter arguments are probably rushing to your mind about negative responses and how those shape behavior too. That’s getting into some higher level theory of ABA and there’s literature to go into that stuff, but I can promise you that, when practiced by skilled therapists, this method is insanely successful. It just is.

My first encounters with ABA, though, were not good, and they made me very skeptical of the whole practice. My son, who, at the time of diagnosis, was echolalic (he just repeated language and didn’t generate original language himself) was enrolling at a language acquisition preschool at University of Kansas, where I was a graduate student. Just across the courtyard from the Language Acquisition Preschool was an ABA preschool, and I toured it. It was an awful, depressing, hellish tour. I was only there for about thirty minutes, and maybe they do great life-changing work. I don’t mean to poop on them, but from my perspective, it was dehumanizing and frightening. Dead-eyed children were being led around like dogs by their therapists who were alarmingly young, cold, and barked orders at them over and over until they complied. I almost ran out of the building, and you can be damn sure that I sooner would have handed my child over to a cult leader than to that preschool.

Later still, I signed on with a dubious ABA provider recommended by my insurance, who came to our home to provide services. Similar issues occurred: a rotation of wildly unqualified therapists basically just tormented my kid (and me because I had to witness it all). One, fresh-out-of-undergrad, first-day-as-an-ABA-therapist girl, stood over my son, who was crying and plugging his ears on the couch and said, over and over, in a monotone at fifteen second intervals, “touch your nose...touch your nose...touch your nose.” I mean creepy, weird, 100% unhelpful shit. Even the BCBA (Board Certified Behavior Analyst) who is basically the boss of the therapists on the team and is supposed to be an expert, was terrible.

Perhaps you, sharp reader that you are, already noticed the discrepancies between my description of ABA and my experiences with the preschool and the dubious provider. You noticed perhaps, that this therapy doesn’t seem very “rewarding.” DING, DING, DING!

   

By a series of miraculous events, we found and got into The Kansas City Autism Training Center which runs Astra Day School. Oh Astra Day School, if I could but spend the rest of my life singing your wondrous praises. Beautiful school, beautiful teachers and administration, blessed, blessed, blessed are you among schools.

This school showed me what good ABA is and changed my kids life forever. So here’s what good ABA is:

1. GOOD ABA IS FUN!

One helpful thing to keep in mind is that good ABA therapy looks good and bad ABA

therapy looks bad. Yay! Something simple in the anything-but-simple world of Autism! Providers will try to convince you that something that looks bad is actually good (you just don’t get it). Nope! They don’t get it. If you are considering an ABA service you absolutely must observe it in action and you must look for FUN! Fun is rewarding to children. Fun changes behaviors. Kids with autism have many aversions and aversions keep children (all children) from learning and changing in positive ways. If there isn’t some silly, off-the-wall fun happening, if there aren’t children and teachers with big grins on their faces and laughter coming out of their mouths on a pretty regular basis, move on!

2.     GOOD ABA USES REWARDS OTHER THAN FOOD

Many ABA providers use food as rewards. I am not against the occasional use of cereal puffs, but I think we can all see the problematic nature of exclusively relying on food to reward children. First of all, your child will (duh!) get full and cease making progress. Then they will have an unhealthy relationship with food and get fat. If a provider is relying exclusively on food rewards it means they are uncreative, small-box thinkers and can’t imagine anything more rewarding than food. If kids are having fun, they are already being rewarded. Astra Day School rewarded kids with things that were therapeutically beneficial as well, like jumping on a trampoline (my super goofy son particularly loved when his teachers would peg him with red rubber balls while he was jumping on a trampoline), getting to play a board game, getting tossed up in the air, being tickled (if the child likes that), having a paper airplane throwing competition, running three-legged races, wearing a crown, the list goes on and on and on! This is the stuff you need to be looking for: creativity, fun, organic social interaction.

3. GOOD ABA PROVIDERS (drumroll)... LIKE KIDS! AND ARE GOOD WITH THEM!

I’ll be real candid, ABA is a highly structured, systematic operation and it’s practice, especially becoming an expert BCBA (which involves massive amounts of theory, knowledge, and real world problem-solving) appeals to Type A people. And thank God because only Type A people would be good at it. BUT  that type A-ness must be balanced by massive amounts of compassion, humility, and just genuine affection for children. If your BCBA’s jaw visibly clenches when your child is not playing into their treatment plan as they had hoped, if their eyes narrow in determination when they look at your child, if they seem to see your child as a challenge to be conquered rather than a precious little person with potential to unlock, if they don’t seem to obviously, openly, unabashedly care for your kid or kids in general, move on!

We experienced some bad ones and the results were zero to potentially negative. Then we hit the jackpot with Megan Carmen at Astra Day School and she became almost a part of our family. She was our son’s second biggest advocate and champion (Who has two thumbs and is number one? This chica👍👍 ). She was creative, attentive, determined and worked tirelessly on his behalf, and she was always open to parent input, viewing us as her biggest resource for knowing what our son really needed. And all of our son’s seven-plus therapists at the school (Emily, Ana, the Laura’s,Cassie, and so many others!) were so fun and loving and dedicated to him, and he ADORED them. And it wasn’t just our team. Every BCBA and therapist at that school was beloved by their kiddos and was deeply invested in those kid’s futures. It was just the culture of the place. So when our son graduated from Astra Day School and headed off to enter a mainstream first grade classroom with minimal supports, team Holland was passing around the box of tissues.

3. GOOD ABA PROVIDERS COMMUNICATE WITH YOU.

You are an asset. You are the one who lives with your child day in and day out. You see their eating, sleeping, pooping, socializing, grooming habits. All of it! And you are the one who is able to articulate it as your child cannot. You are the most important source of information. You are how a therapist knows what to program for. You are how they know if their results are making it home and to other contexts. Your BCBA should openly rely on you and seek your input. Your BCBA should also be constantly letting you know what is being worked on and what you can be doing at home to assist in progress. They should have a binder of graphs that chart, in clear, no-interpretation-needed, up-to-the-minute data how your child is improving (or not), and they should be able to show you this data upon request. You should feel like a team. If you ever feel in the dark about what is being worked on with your child or how they are progressing, say something, and if after you say something you still feel uninformed, let them know that communication is a problem and you need that problem addressed. If it doesn’t get remedied, consider moving on, unless, of course, you are so dazzled with the results that you’re willing to sacrifice being in the know.

4. GOOD ABA PROVIDERS ARE TRANSPARENT

It is common for center-based ABA providers to have double-sided windows so that parents can observe their children without being observed and potentially distracting them. Astra Day School welcomed and even encouraged parents to come into the school, classrooms, wherever! To observe sessions and to learn how to work with their own children in effective ways. You should be able to observe in-home therapy and you should be welcome at your child’s school.

Let’s be real, children with special needs are among the most vulnerable human beings in society. Children with intellectual impairments are as much as 4.5 times as likely to be victims of sexual violence or abuse. As a parent of a special needs kid you need to face that. Face it. Take a deep breath and face it. Did you face it? Okay, we can continue.

Our culture doesn’t like to talk about. You will be seen as neurotic and suspicious for even asking questions that suggest you are concerned about the safety of your child. TOO BAD, SO SAD. Reality is on your side. You have to protect your statistically vulnerable child and NOBODY ELSE is going to do it for you. Don’t allow your statistically vulnerable child to be in situations where there are no measures to protect them against abuse. I, personally, would never choose a center-based provider who did not allow me to stop by and see to the safety and well-being of my child at ANY time, and I would not allow an in home therapist to request or have privacy with my statistically vulnerable child. In the next room with the door open, sure, fine. And that can change as your relationship with the provider changes. By the second year at Astra Day School, I would have trusted my son’s providers to take him in a rocket to the moon. But never, ever go against your gut. If something feels secretive, or if parents seem unwelcome, then there is probably something they don’t want you to see. It’s probably not horrific abuse, it’s probably just bad therapy. Either way, transparency is healthy and essential.

I realize that Astra Day School is a really special gem. Not every experience is going to be that magically perfect, but the closer to magically perfect you can find, the better.You have to weigh things for yourself. As a rule of thumb, I would say no therapy is better than bad therapy (both are terrible), middling therapy is better than no therapy, but don’t be content with middling therapy. Start there if that’s what you can find, but keep seeking out the best. The stakes are so high and you will never get those precious years of neuroplasticity back. It’s frightening to acknowledge, but the quality and amount of therapy you do in your child’s younger years will determine the quality of the rest of their lives... and yours. It’s the most important investment you will ever make.

I also realize that in most cases the quality of therapy correlates to cost and the cost of high quality ABA can financially ruin a family. This is a horrible reality. I got the absolute highest quality therapy for my son and lots of it and my husband and I NEVER (there’s an important exception with FIT LEARNING, which I’ll talk about another time) PAID A CENT. Yeah, you read that correctly. We paid zero dollars and zero cents. My husband works for Trader Joe’s, (blessed, blessed company!) and Trader Joe’s insanely affordable insurance covers autism services at 100%. Yes that’s right, 100%. Copay? Nope, 100%

I hesitate to share the secret because I’m kind of afraid Trader Joe’s will change their policy, but F it. If you can’t afford autism services for your child, go get a job at Trader Joe’s. If you are over-qualified, get a management job at Trader Joe’s. They make good money and it’s pretty fun. I’m sure other companies have similar insurance policies for their employees. If you know of one, please feel free to mention it in a comment. And if you have any other questions about ABA, please ask in the comments and I’ll do my best to answer. There is SO much more to discuss, but this is already long.

Good luck parent warriors!

The A(utism) Word

        A while back I wrote a post about my concern that our son was developing a stutter (click here to read that essay). Now, a little over a year later, we have a diagnosis of Autism Spectrum Disorder. 

Um, hi God. I'm sorry I complained. We'll just go ahead and take the stutter if that's alright with you.         

When you receive an ASD diagnosis the first choice you have to make is how to feel about it. This isn't the chicken pox or the flu, an illness one endures in the body and then gets past with their essential self intact. The decision is actually an incredibly complex one that depends on what you know about autism, what you believe about it and what attitude towards it you think will best serve your child. This decision is quickly brought to a fine point, the first time a situation arises where you have to choose whether or not to use the word, autism, in your child's presence.  

To use the A word or not to use the A word. This is a tough decision to make as a parent of an autistic child, and I want to say right up front that I don't think there is one right choice. Every parent has to search their own soul and do what they believe is best for their child and their family. But your attitude towards the word can be in some ways representative of your attitude towards the disorder and towards the future.    

        For a while I thought that my willingness, and even comfort, using the word "autistic" was a gage of my level of acceptance, acceptance of the diagnosis, and more importantly acceptance of my son as something other than what we all hope our children will be, healthy, whole, unlimited in potential. I thought that perhaps if we just said it like it was no big deal, like being left-handed, that it would seem like no big deal to him and to us, and it would lose its power to inflict pain.   

In an effort to "accept" and prepare for an "inevitable" future with autism, I started reading books about autism in later life. These books were meticulous in their avoidance of hopeful language. They never spoke of healing, they never spoke of improvement, they never spoke of potential or independence, they never acknowledged the possibility that autism could be anything but incurable. In horribly no-nonsense language the chapters went on about assisted living and the best types of savings accounts for preparing to financially support your child for the rest of their lives. The autistic child was, and always would be, a hopeless burden. Accept it. Those books were advising me to box in my son’s life in the name of practicality, realism. According to those books acceptance seems to equal letting go of hope for him, for his future and the fullness of his life. To hell with that.  

       

There are a lot of people in the autism community who want to tell you not to get your hopes up. Some have the attitude that you should just be zen about it and "accept" what is. Don't waste time searching for a cure, just put a positive spin on things as they are. There's the movement for "neurological diversity," that suggests that autism doesn't need a cure, that autism isn't worse than "normal," it's just different. There are the bumper stickers some tote on their cars that say "Autism is Ausome!" Perhaps if you think of all autistic individuals as being savants like Rain man (as movies and television like to portray them) autism might seem "Ausome," but the reality is that only 10% of autistic individuals demonstrate any savant talents, and that talent is usually something as useless as being able to recite the December, 1989 TV guide from memory. On the other hand, twenty-five percent of autistic individuals are non-verbal. Only 17 percent of autistic individuals, ages 21-25, ever even attempt to live independently. Autistic children are victims of abuse and even homicide at a rate that far exceeds that of typically developing children. Many, if not most, individuals on the spectrum struggle to have human relationships. They don't like to be touched, they don't like to be hugged, they don't bond with their family members. I don't know about you, but that doesn't sound awesome to me, no matter how you spell it.  

Others, often in reaction to the "I'm ok, you're ok" bumper sticker rockin', delusional pep squad, go too far the other way. They urge parents to face the grim facts. To accept that it's a hard, painful, devastating condition that brings suffering on entire families. They get angry when fad therapies emerge, or some new study makes news and "gets everyone's hopes up." One side says, everything's A-okay! Who needs a cure? The other says, everything is awful, and talk of a cure is cruel.  

I get both impulses, really I do. Autism is terrifying and heartbreaking, and the only thing scarier than the disease itself, is the hope that you can rescue your child from it. Hope is scary and painful. Hope does not deny what is, put a positive spin on it, say it's not that bad, but it also refuses to accept it as unalterable. Hope focuses, not on what is, but on what can be. It puts all its eggs in a basket that very well might get smashed to shit, and it knows it, and it does it anyway because hope is only for the strong and the brave. What I want to tell those people who abhor hope in one fashion or another, is, if you want to be zen about your  own challenges and struggles, or if you want to lay down and die in the face of adversity, go for it. But no one has the right to do that for someone else and especially not for their child. If you're a parent, you don't have the right to give up hope because a child will never have more hope and determination than their parent. So you go cry in your closet when you need to and then you wash your face and you get back out there and you hope, dammit.    

Autism is a really twisted, gnarly maze, but there is a way out, and it's my job to get in there with my kid, take his hand, search unceasingly for that way out, and hum a song while we do it, so that he's not afraid. I don't have time for anyone who tells me to just leave him in the maze, or to throw him a pillow so he can get comfortable because there's no way out. I'm not leaving him and I'm not throwing him any pillows. We're getting the hell out of there.

  

My aunt was born with her umbilical cord strangling her. She was brain damaged, and the doctor's told my grandmother it would be best to institutionalize her. My Grandmother said, very politely and in not so many words, screw that. She took her baby home and she raised her just as she raised the rest of her ten (!) children. She never lowered the bar for her, and she never allowed anyone to stick any limiting labels on her. She got her some therapies, but put her in regular school, regular sports and expected her to abide by the regular rules. My aunt today has a full time job, owns a home that she paid for, is a fully functioning autonomous woman, and to this day doesn't think of herself as disabled. My aunt grew up just assuming that she could do what everyone around her could do and that she would go on to do the same things as them in the future. Assumptions are powerful stuff.  

It doesn't seem like a little old word should matter that much. A rose by any other name, and all that, but words do matter. Words and labels have incredible power, and all I see this particular word as offering my child, at least at this point in his life, is excuses, crutches, reasons to fail, lowered expectations, brochures for a lifetime of assisted living. I want him to assume that he can do the same things other kids can. I want him to grow up assuming he will have a family, he will have a career, he will go places and do things and affect people and make a difference. And while he's doing that, I'm going to assume that there are answers out there and that I'm going to find them and he will be a success story. We have nothing to lose but hope, and hope isn't hope unless it's being gambled.

Overcoming the Fear of Revision and the Horror of the Blank Page in Freshman Composition

As I embark on the task of teaching revision to my Freshman Composition students, I keep thinking back to when I was in the camp of the revision resistant. It wasn’t hard because it was only about a year ago. For me at least, and I imagine for some others too, there is a particular fear at the heart of my revision resistance, it was a fear of what I perceived to be my own scarcity of resources. When I read something I’ve written that’s good I usually feel like someone else wrote it. I think to myself, how the heck did you pull that off? When I read something bad that I’ve written I think, yep, now that sounds like you. Sometimes if a piece of writing seems good enough, it feels safer to cash in our chips and walk, than to bet on a second try actually pulling something better out of ourselves. Insecurity says, maybe there isn’t anything better in there. I remember feeling this strongly all throughout grade school and even during my undergrad years. I think the one-shot finality of most systems of evaluation adds to the high stakes gambling feel of writing and discourages risk-taking, and really risk-taking is the only way a young writer can discover what works and what doesn’t. In other words it’s the only way they can improve. 

To go at a piece of writing like a demolition crew with sledgehammers (to borrow an analogy from Annie Dillard) is terrifying if you fear that you lack the resources to rebuild. Knocking out loadbearing walls can be exhilarating, but only if you’re confident that you can erect something far grander in its place. But you can’t obtain that confidence until you’ve knocked out some walls. But you can’t knock out walls until you have confidence. Catch 22. But not really. FYE is the perfect place to force young writers into demolition work, painful, terrifying, pulse-pounding destructive mayhem!Students should write papers and then write them again from a different point of view, or to a different audience or for a different context, with a different tone or with both hands tied behind their backs. They should hand in an essay, and then immediately have to write it again in class from memory with pencil and paper. Anything to pry that death grip loose from the life-preserver of the words they’ve already gotten down, to thicken their skins, toughen them up, make them Hell’s Angels of revision. Teach them to kill their darlings, to show no mercy, to believe in the superabundance of words, of materials with which to rebuild, help them discover that there are infinite words inside them. That they will never ever run out.  

Hemingway, as many know, lost nearly all his stories in a briefcase in a train station, when he was a young struggling writer. This was before the days of zip drives or even photocopies. He had to face the fear of his own scarcity of words, his own belief that he could never replace what was lost. He stopped writing for over a year because he didn’t believe that he was the source of all those words, that if he had done it once he could do it again. Once he realized that, he was able to write again, and most of the works that we know and love from him are the result of that daring second try at building something new on the site of the old. If Hemingway wrestled with the fear that every well-crafted sentence or story was somehow just a stroke of good luck, than we can imagine how tentative our freshman writers must be, how reluctant to discard a paragraph, sentence or word if any of it can be salvaged. I remember feeling that a page with something, anything, on it, no matter how paltry, was preferable to the horror of the blank page. That’s why I believe classrooms should be like the show Fear Factor; students should be forced to lay in claustrophobic spaces covered in revision, should swim unarmed in shark tanks of revision, should balance on high wires suspended over seething, swarming pits of revision, until they emerge, dazed but victorious, fists pumping the air like Rocky, ready to build mansions of words, having triumphed at last over their fear of revision.