Sunday, September 29, 2013

On autism and ABA and assholes

I just got back from one of my favorite places on Earth, the annual Florida Association for Behavior Analysis conference. I don’t talk much on here about what I do as a profession, but after having a few days to think, I now want to put into words some of my feelings.

First, some background:

I graduated with a BS in Psychology, a minor in Sociology, and a certificate in Criminal Justice from Mississippi State University in 2002. (Go Dawgs!) I immediately entered Florida State’s program for Applied Behavior Analysis and became a Board Certified Behavior Analyst in 2004 soon after earning my Masters.

During my undergrad years I worked as a tech in an acute psychiatric ward for adults. Throughout grad school, I worked doing in-home ABA with children with autism, in Head Starts with children with behavioral disorders, in preschools doing standardized assessments for a federally-funded research project, and then my last practicum, working with adults with post-acute traumatic brain injuries, turned into my first post-graduate job. I worked in TBI rehab for several years before switching to a position providing community-based services to adults with intellectual disabilities with behavioral issues that make accessing the community and being independent difficult. I currently provide in-home services to adults and children with intellectual disabilities/developmental disabilities and accompanying behavioral issues that interfere with their daily lives.

I love what I do. I love the clients I serve and the families and staff who support them. I love the science I stand behind. I love the perspective behavior analysts have that not everyone understands, but that we can see so clearly. I love being a behavior analyst.

I can still clearly recall some of those “AHA!” moments I had during grad school, when some new concept that had once been foreign to me suddenly made perfect sense. I remember watching my in-laws interact and suddenly understanding the laws of behavior didn’t just apply to children with autism. I remember using what I learned in class to train my dog to do fun tricks and shape my husband’s dish-washing behavior. I remember that day I really, really understood that ABA could change the relationship between countries and religions and cultures, change the work force, change the educational system, change the way children learn to be adults, change the world… And I still, with 100% of my being, believe this is true.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn’t see what we see and understand what we understand... And suddenly I have much more to say about it.

As most of my blog readers already know, I gave birth to my older son in April of 2008. We knew upon his birth he would likely suffer from lifelong disabilities, and I began teaching him the only way I knew how immediately after he was born at 23 weeks gestation. I would withhold verbal praise when he desatted on the ventilator. I would praise him and give firm pressure for a good heart rate and tell him how proud I was of him. I began doing full physical prompts at 28 weeks gestation to teach him to sign for drops of breast milk into the corner of his mouth. (At one point one of my favorite neonatologists threatened to kick me out of the NICU if he ever saw me working on baby signs again until after Dax was supposed to be born, so I just did it on days he wasn’t there ;) Dax became my favorite client, and I’d pencil him in my planner every day for a long visit where I’d work on establishing myself as a reinforcer, try to determine novel reinforcers, and teach him how to live and thrive within his environment. The nurses would laugh at how much he responded to his classical music CDs, and they could always tell when they weren’t at his bedside if his CD was over because he would desat until they pushed play once more. Boy did he train them fast ;)

Eight long months in the NICU later, Dax had his first MRI, and it was bad. Very bad. Chunks missing bad. Streaks of dead area bad. “He’ll never be able to sit up or walk” bad. But we all know now, five years later, after intensive multi-disciplinary expertise and consistency and repetition and consistency and repetition and consistency and repetition and consistency and repetition that the kid can do anything. Try to stop him.

When little brother was born eight months after Dax came home from the NICU, we assumed he would be our typical little boy who would provide Dax with a “normal” environment while Dax taught him about compassion and diligence. Looking back, the signs were there from birth. Tyler would never breast feed, not even with the help of half a dozen nipple Nazis, errr, lactation consultants. He screamed constantly, he would never eat enough to fill his tummy, and he was never that happy baby you read about in books and see on TV. At six weeks old I was finally able to figure out he wanted cold breast milk straight from the fridge mixed with formula mixed with a tablespoon of baby cereal in a Dr. Brown’s phase 2 bottle. Still, even after he finally would get his tummy filled, he always looked so serious. My parents jokingly said he always looked like Richard Nixon with that classic scowl. We didn’t get the baby giggles and the smiles and the cooing… Looking back, I should have seen the signs, but I only knew that he was my “normal” child. I had no idea he’d later go on to be diagnosed with classic autism.

Dax, 5
Ty, 4

I say all this because, thankfully, I am a behavior analyst through and through. I can hypothesize without a controlled study that, based on Ty’s behavior patterns and history, he would “appear” much more autistic had I known any way to parent other than through behavioral principles. I can hypothesize without a controlled study that, based on Dax’s behavior patterns and history, he would have fewer skills today had I known any way to parent other than through behavioral principles. My last few years have been filled with those "AHA!" moments.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn’t see what we see and understand what we understand... And suddenly I have much more to say about it.

I now stand with my feet in two worlds. One foot is planted firmly in the world of special needs parenting, and my support network is comprised of mothers and fathers who work hard every day to provide their children with every opportunity to succeed. They fight schools and doctors and therapists and odds to give their children the chance to be happy, successful, involved, and accepted, no matter what label, diagnosis, or prognosis their child has been given. They live this life 24 hours a day, seven days a week, holidays and weekends, at 3AM and 9PM. They sit vigil in hospitals and sleep covered in vomit and they don’t like you and they don’t trust you and they will fight you to the death for this child they adore.

My other foot is planted firmly in the world of applied behavior analysis, and my support network is comprised of BCBAs who work long hours trying to help children, adults, families, and staff have a better life. They know how to teach and they know how people learn and they know how to decrease bad behaviors and increase good behaviors. They write behavior support plans late into the night and field phone calls at 7:30AM and they want to fix the world through environmental manipulation and concrete data. I live in the world of special needs and ABA every second of every day. But as I stand here with my feet in both worlds, I feel compelled to answer the question that continually arises at every behavior analyst conference I attend. I feel compelled to inform the BCBA masses why I feel we’re not as widely accepted as occupational therapy and speech therapy and hippotherapy and psychiatry:

We’re smug assholes. From some of the top names in the field to the lowly first year students, we're just smug assholes.

I was one once. I understand. I would tell a mother there was no reason why XYZ shouldn’t be completed 100% of the time; why reliable 5-minute interval data was important every 30 minutes. I would tell a mother “There’s no research support for that” or “You’re just wasting your money” or “They’ve never published that in a reputable medical journal” and I would go on about my day, completely sure I understood everything there was to know about “fixing” kids with autism and kids in general. In my world, everything could be so simply understood by breaking it down into observable behaviors. That’s what we do. That’s what we’re good at. I was an excellent radical behaviorist.

But now I’m a mother. I am not just a mother to two boys with complex behavioral repertoires which always break down simply into an ABC analysis. I’m a mother to boys with internal, unobservable behaviors. I’m a mother to children with personalities and stomachs and brains and neurotransmitters and bruises and quirks and my eyes and stubbornness and their dad’s hair and athletic ability and penis-related hearing loss and sweet tooths. I’m a mother to children with complex EOs and MOs who would have been LOST were it not for strong speech therapists and brilliant occupational therapists and knowledgeable vision therapists and creative physical therapists in addition to solid ABA support. I’m a mother to a child who loses the ability to answer things he knows, walk steadily, or make good choices when he has a cold or is constipated due to neurological issues I can’t control. I’m a mother to a child who can find letters, numbers, and shapes hidden in his environment in his french fries or in the trees or in fences or in the drywall, but just learned to call me “Mama.” I’m a mother to children I cannot see only as behaviors that need to be increased and decreased, and I know things about them that there is no data out there to support, but that doesn’t make them less true.

But still, I stand in two worlds. My special needs friends can be pretty far out there for my BCBA mind some times. They try things I can’t wrap my head around. They quote articles I can find no scientific backing for, and I keep my opinion to myself unless directly asked, and even then my standard response is “I've seen no studies that show it works, but take data and let me know how it works for you.”

And still, there are things I try that are immediately met with criticism from my BCBA friends. “There’s no data for that.” “There’s no proof that works.” And yet, if I present my own data to them (“Look, the immediate effect of joint compressions as recommended by my son’s OT decreased his jumping behavior by 80% in the five minute data interval following the application of the compressions,”) they remain skeptical, despite the fact we are well-versed on single study designs. Why are we so opposed as a discipline to the idea that some of these “wacko, out there” interventions might actually work for some kids? Why aren’t we collaborating with other professionals to evaluate the efficacy of the treatments they are recommending rather than bashing them without doing our own single-study research to provide feedback?

Because we’re smug assholes.

We KNOW what we do works. What we forget, as a discipline, however, is that to everyone else, our clients are NOT just a collection of behaviors to be increased or decreased. Yes, our strategies work on primitive organisms all the way up to large masses of individuals in corporations and countries filled with voters. Yes, training your dog and teaching your kid how to hit a baseball utilize the same principles as a parent trying to train her eight-year-old son to say “blue” and use the toilet, but, as a special needs mother of two children with diagnoses, my children are no more simply a collection of behaviors to me than your dog or child is to you. The difference is, the odds are in your favor. Your dog will probably be a dog. Your kid will probably grow up without constant intervention and move out and become a somewhat successful adult without you teaching him constantly or fighting a broken system to get him what he needs. Odds are your dogs and kids are assholes too, sometimes, just like ours are, and sometimes you get exasperated. Odds are, sometimes a friend listens to you complaining about an issue you’re having with your dog or kid, and the friend can come up with a simple solution from the outside looking in that you couldn't see because sometimes it’s ridiculously hard to step out of your box and look at the big picture.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn't see what we see and understand what we understand... And suddenly I have much more to say about it.

I find, with my feet in both worlds, I get much more “emotional” support and empathy from my special needs mother peers. I get anecdotal information I can digest in my own way and learn tips that only parents who live this 24-hours a day will learn. My BCBA friends offer excellent solutions. They are always available for concrete, evidence-based practices that have been proven to be effective for children with autism and head injury and noncompliance and poor tacting skills, but they cannot offer empathy, not in the same way a special needs mother can. They can try, and I have my goto BCBA friends whom I always nail down for advice and direction, but I find many BCBAs lack the ability to step for even one moment into a mother’s shoes because as a discipline we’re so caught up in science we often forget it’s people, not science, that matter in the end. It’s a child. It’s someone’s entire world. It’s a perfect, amazing creature with his mother’s eyes and stubbornness and his father’s hair and athletic ability. That’s where we lose people. That’s why we aren't as accepted. That’s why parents don’t follow through with all our programs. As much as we KNOW people are just rats in a lab, we cannot forget that people ARE NOT just rats in a lab.

There is a place for objective scientific reasoning, everyday. There is a place for graphs and data sheets, everyday. But, maybe we’re the ones we should be focused on changing. Maybe we should spend more time becoming conditioned reinforcers and less time completing the RAISD. Maybe we should spend more time listening to parents and other professionals than we spend refuting what they’re saying. Maybe we should spend more time analyzing treatments we’re unsure of than trying to publish data everyone already understands. Maybe we should spend some time understanding how internal behaviors work so we can do a better job coming up with replacement behaviors that actually work rather than just hoping for the best. Maybe we should become more likable than Jenny McCarthy. Maybe we should spend less time telling people that ABA works and spend more time using the principles of behavior in community relationships. Maybe we should acknowledge we can know how behavior works without always being able to utilize it effectively in our own lives. Maybe we should admit that we kick major butt at understanding the laws of behavior, but there’s a crap ton of stuff out there we don’t know.

Maybe we should just stop being smug assholes.

And, for heaven’s sake people, stop telling parents you know what it’s like to have a special needs kid because you have a dog. One day a mother will punch you in the throat for that, and I’ll probably buy her a drink afterwards.


Mollie Sheppard, MS, BCBA, and most importantly, MOM