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.

Sincerely,

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


52 comments:

Megan Miller said...

Love this Blog! I am an FSU grad too and Samantha shared it with me. I think you should present on this topic at a conference :) I bet Pat Friman and several others (myself included) would be more than happy to join you on a panel regarding this topic! I know you don't know me...but you are AMAZING!

Anonymous said...

3Wow! I honor and appreciate your authenticity and passion. I am a behavior analyst , and work , continue to work, very hard to be ever increasingly humbled by the work ABA can do. It's not ME, it's ABA , and the families, the other professionals, the kids, that create change. It is astonishing to me that so many behavior analysts are so smug. Well, not really. It answers a lot of questions in ABA policy..... YOU are a true mama warrior, and I admire you for sharing. It certainly brought awareness to me to continue to work hard to remember to be humble, respectful, human.

Karen Reid said...

Loved and shared! Amazing! I am a BCBA and a mom to a child with ADHD. It's not autism but it might as well be at times the way the world views him and his behaviors. Awesome work and totally agree!
I would totally be on that panel!

P.S. If you ever want a job in Florida you are hired...Love your mindset!
-Karen

Erin said...

Hallelujah for this post. I've been wanting to say the same thing for years. I have been in the field for eleven years, have BCaBA and will test for full next year. ABA was my life and I have said all those same things. The a kiddo came into my life that I one hundred percent help raise and have for the last three years. And ABA is now my life literally all day and just because I finish work with other kids, I come home and the rest of our day is filled with autism. But now I see a different side- and it has absolutely changed the way I do ABA and how I speak to parents about it. And I know the whole world isn't based on what I can see. If I had worked with our kid through only behaviorist eyes then he wouldn't be doing as well recently.
For months he had severe SIB, so of course I tackled it like any good behaviorist would. Worked on reinforcement, was one hundred percent consistent on everything we did etc. Did an FBA. But then one morning I woke up and realized maybe one of his many medical issues is the underlying cause (hypothyroidism, epilepsy, metabolic disorder etc). First I thought seizures. After days of physical restraint trying to protect him I took him to the mountains for a retreat just me and him. Seemed better except I could really see what brought on rages. Then a few days later decided maybe it was his metabolic disorder. Began to feed him every hour and a half. No more rage attacks. Took blood sugar level a few days later- data backed up out gut feeling that his blood sugar was crashing throughout the day. No more rage.
We couldn't see his bold sugar crashing. But got a "feeling". Tested it and now we have our kid back and just have to figure out why it's dropping.
I had some BCBA supervisors suggest height need to be inpatient or medication. But I "knew" this kid. I knew it was more than behavior. I knew it was not him. I couldn't prove it on a piece of paper or give them the data- but I've been his parent for three years, plus the two years prior to that I knew him and his mom had dealt with it his whole life (16 now). We knew it. And we were right, then I got the data to make it indisputable.
And now I know- sometimes you can't deny feelings as a parent- when you know your child- just because you can't always see it.
I've had gut feelings other times with kids in practice- sometimes you just know especially when you are mom. When I'm at work I'm the behavior analyst. When I'm at home, I'm both and have my eyes open to both, depending on what's needed.
I probably didn't explain well in this comment- but you definitely said everything I've always thought.

Anonymous said...

You are my hero! The best of both worlds! Thank you for continuing to open my eyes! You and your family humble me every day.
Yulema
Fellow BCBA

Only the Sheppards said...

Thank you everyone for the feedback! I was a little worried this wouldn't be taken so positively :) And had I known 500 people were going to read it this afternoon I probably wouldn't have said "asshole" so much, but that's how I feel about it. I would LOVE to be on a panel about this, and, honestly, I feel like part of my calling now is to bridge that gap between special needs families and the rest of the world. I think that would be amazing!

Karen, what part of Florida? After FABA I have a little beach fever! (I kid, but thank you!)

Erin, thank you so much for your story. I'm thankful my first few years were spent in TBI where there were so many comorbid medical issues I was forced to look at my clients in a multi-systems, comprehensive approach and work with a team of other professions. They taught me so many skills I didn't know I'd need later on, such as managing feeding tubes, dyspagia, seizures, vertigo, apraxia and ataxia, etc. That experience has been invaluable, and honestly, that setting, where SLPs and OTs and PTs and nurses and MDs all worked together as a team rather than as opposing disciplines, we had the most effective and efficient procedures I've seen to date. It was also pretty humbling to realize as a BCBA I didn't know everything, but ABA could be used as an umbrella under which all the other disciplines became more effective as I learned just a tiny bit of the knowledge they had in their fields. I wish everyone got the chance to work in that type of environment for a while!

Only the Sheppards said...

And Yulema, <3 :) So glad I got to see your face at FABA!

Christine Reeve said...

Very well said! So glad that someone has the guts to say it. I would add another dimension that you touched on--stop thinking that we (BCBAs) have all the answers and that other professions know nothing! It makes me nuts and has for many years. It's one of the reasons why I love my background with Ted Carr and the opportunity to learn to see a wider view such as the overlap of medical issues with behavior. I'm off to share this. Keep fighting the good fight(s).

Lisamaree Dom said...

Thanks for putting into words what I've always kind of felt. I'm completely unqualified - no University degree or Board Certification. But I have 15 years of double Autism parenting and 10 years of learning about ABA and boy have I met some Arseholes. There are a lot of Arseholes on both sides - we've been fighting for evidence based education in Ireland since 2003; but lately the stand out Arseholes have been in the nascent Australian ABA movement. Not many BCABAs, not very much Supervised experience, but a lot of "This child has a compliance problem!" and "you must always redirect them from stimming"
Things that you would never hear from gentlemen like Peter Gerhardt or Bobbie Newman.

My favourite 2 BCABAs who stand out we're both very very experienced in being around actual real children with hugely challenging needs. They gave me great confidence as they used their positive reinforcement strategies on me as a Mother dealing with an aggressive teen while demonstrating as much respect and understanding for my son. It is their opposite-of-Arsehole-ness that makes them stand out.

Parents need science. You can't analyse the other 85% of the iceberg while you are on the challenging behaviour Titanic. But we also need compassion.

And when a parent asks me if they should question a program that seems too rigid, I say to them that ABA starts with environment and you are a key factor in that environment: so it has to be comfortable for you too.

I thank you again xx

Lisamaree Dom said...

*The 2 BCABAs were behavioural directors in our ABA school. One was a Mom too xx

Anonymous said...

Thank you! I have been a school psychologist for years. We have a good over-view of behavior principles and behavioral management techniques. Let me say that again: we have a good over-view of behavioral principles and techniques. Therefore, there was a time when I heard an ABA or ABBA would be attending an IEP meeting and I would think, "Oh, good! Reinforcement! Help with the kind of fine-tuning this behavior plan needs! Fresh ideas! Yay!" I quickly learned that I was WRONG. Unless the ABBA was a school employee, he or she consistently (on my experience, N=1, no I didn't keep data during meetings) the meetings go badly. Private ABBAs monopolize the meeting. They tell us how great they are, how great the student is with them and how incompetent and evil we are in dozens of different ways per meeting. On the parents' dime, they shred a carefully written IEP, monologue on how stupid state required forms are, insult and demean us. But what I can't forgive is they prevent us from TALKING ABOUT THE STUDENT! We have a chance to communicate with a parent, and the ABBA monopolizes and prevents it! I have literally had a private ABBA, at the initial meeting on a 3 year old just entering our system, respond to my hello by telling me that if I think she will let me reverse all her hard work by letting the child go backwards I was insane. Hello would have worked better. At the end of the hours-long meeting every school-based professional at the table dreaded the possibility of having to work with that child, because of the ABBA's behavior. When you do this, you DO NOT do the child or the family a favor. She was a 3 year old, and she deserved to be welcomed at school without baggage. No child should enter a classroom where the teacher dreads her presence on day one.

Teachers work from their hearts. I have seen a special ed teacher kiss a child who was covered with puke. I have seen them with bruises and bite marks. I have seen them cry. I have seen them take their most violent student home for the night because Mom had an accedent that day, They write IEPs at midnight. They email their school psych at 2 a.m. They carry the reputation of a broken system and 'some bad teachers' and when you walk into their classrooms or meetings, show a little respect. Don't assume incompetence or meanness of spirit or apathy until you have the data to support it. It is assumed you have to fight the school, but teachers are lovers of children not fighters. They hate the same things about school you do: budget restraints, too many students per adult, too few resources. They are working in a system they did not create. Can you show THEM some compassion?

News flash: we WANT to collaborate with you! We respect your expertise! We WANT what is best for our students, we WANT to see amazing progress from each of them! But we can't collaborate with you if you won't stop talking! If it's one long bashing of school staff, you give us nothing but MORE wounds to heal, and we have enough of those already.

No one goes into a career in special ed because we want to hurt kids. I pray everyday that I never hurt a child, and I know my judgement has not always been perfect. I'm not an ABA. I have to rely on judgement and experience and I try to relate well to families and bring compassion into every interaction. DON't undermine me in this! Let the meeting be about the child and NOT what a hero you are and how incompetent everyone else is. Stop being smug assholes so we CAN collaborate with you! You have amazing training and expertise, and we WANT to use your knowledge! The barriers are your arrogance, your insults, and our relentless time pressure.

Enough said. I feel better now. This internal experience was cathartic and helpful. Thank you.

Anonymous said...

Yes, I've met many a smug BCBA before. But I've met so many more who *are* moms and dads, sisters and brothers who do see the kid first. I felt sad about this post because I think it represents the worst of us. Who among us hasn't cried with a family, celebrated a victory, really helped someone, collaborated willingly with an OT, PT, SLP, teacher, and family? A-holes? Really? I think many people go to these events with their "conference game face." But I've seen so many--so very many over 22 years who do their jobs with kindness, humility, warmth and compassion for others that sincerely makes me believe humankind just might be ok.

Only the Sheppards said...

Thank you, everyone! To the anonymous school psychologist, I am sorry you've had such a terrible experience. One punishing interaction can do more damage than a whole lot of reinforcing ones can fix. I hope you have some private BCBAs come your way that will make you think more kindly of us!

To the anonymous BCBA of 22 years, yes, I agree. I do believe this represents the very worst of us. I too have met many wonderful BCBAs! This post was never intended to point fingers at any particular BCBAs, more at our profession as a whole, and it was written a little tongue-in-cheek. I also never expected it to be read by more than my handful of peers who understand my sarcasm ;) In hindsight, however, I'm glad I wrote what I wrote the way it was written. I wasn't trying to sugar coat. I wasn't trying to impress. BCBAs like you have nothing to gain from it, but BCBAs like me do. I was very smug. I was very sure I knew everything there was to know. I didn't, and now I know through my own experiences and through those that are shared with me by other special needs parents. I can look back at the behavior analyst I once was and cringe at some of the things I said and did in the name of ABA without understanding the things I now so readily understand. If I can help just one family get better services through these words, then it was worth it. If I can help one BCBA be more gracious, then it was worth it. In the end, as I said, it's the people that ultimately matter. Thank you so much for your feedback on the matter!

Only the Sheppards said...

And yes, BCBA is very broad. But, think of me as a mother for this part. Think of me as Dax's mom. The day he was born I was positive I could ABA him into the perfect, healthy child. I was a little crazy, yes, but no one can deny he's done remarkably well given his circumstances. I thank ABA for that. But as BCBAs, we have a line drawn in the sand where medical meets behavioral, and we can't cross over that line. As a mother, I HAVE to cross over that line. I've had to work side by side with SLPs teaching him to chew and swallow, something I could never ethically do as a BCBA but I can do damn well with alongside a swallow trained SLP. realistically, if I were to "rule-out" medical for him, there would be nothing left. There's no pretty line in the sand for him. Vertigo? balance control? Working on fine reflexors? My expertise paired with knowledgable specialists has made all the difference. Yes, as a profession we are spread thin, but ethically NO BCBA should walk in that land alone. I'm TBI trained, but still, that's not a land I could walk in alone. There are very few out there, if any, who could. So do we throw our hands in the air and say sorry, we can't help? Where would Dax be without ABA in his daily life? Tyler is autism. He's always been autism, and that's what most BCBAs know. That's where they're comfortable. But there's SO MUCH MORE. Do you know how hard it was for me the first time I had to sit back and watch Dax in a speech therapy session? Do you know how hard it was for me to not run in there and tell her how she was doing everything wrong? We're on our 5th speech therapist now. Sometimes I fail at the diplomatic side of it as a parent :) But when the kids are first and our egos are second, for any/all disciplines, then the rest will fall into line.

Anonymous said...

Just want to say that I left feeling the same way! I've been thinking about it for days actually and feel like, of the 12 years I've attended FABA, the smug vibe stood out to me the most this year. We are becoming increasingly concerned with this phenomenon and yet increasingly isolating ourselves from other professions and society in general because of our pride. We've got to pair and collaborate!!!

carmen said...

Oh mollie.. I need to meet u. I am where u r. I was abaing the shit outta caleb from day one.. I had the home care team yelling at me to stop! As a mom I also have my foot in both worlds... I get u... ADOS assesment next month... I have a whole new outlook for the parents I used to train... My foot in both worlds to0!

Anonymous said...

My son has has two therapists, one a BCBA and one a BCaBA. (We have military insurance and right now he is in Echo so he needs to work with someone with a certification.)

Both of these ladies have been extremely sweet, not smug at all.

His second has been several times to observe at his pre-school and the pre-school teachers like her, too.

At pre-school the teachers are very "anything you want to try we will support you." But actually I can say to his home therapist "I don't like how this other thing is going" and they do say "take data," but I feel like they are giving me permission to quit, when otherwise I feel pressure to do everything. Specifically OT is not appropriate for my son right now, and I am happy we quit it for now. Everyone says it is so good but my son just wasn't getting anything out of it.

I have only had one dealing with the supervisor who is a BCBA-D. Possibly she is smug, but when I was flipping out about a sight word reading program because my older son has dyslexia and I do NOT want sight words, she arranged for him to have Reading Mastery instead. I was flipping out about this and people thought I was crazy, so I think I will always like her for that.

trishi83 said...

I loved reading this. I'm a preemie Mum and a BCBA too. I can relate so strongly to everything you're saying in this post. ABA suffers greatly from assholery in Ireland as well as the USA!

Karla Bull said...
This comment has been removed by the author.
Karla Bull said...

WOW! What a great dialogue! I love what you are saying about inter-disciplinary teamwork-I'm always saying: I wonder what an ABA therapist would think of this kid's behavior?? :-) Thanks for your insightful thoughts!

Katy said...

I loved this post! We all need reminders to stop being such scientists and start feeling! I'm pretty sure from now on all trainings and talks on acceptance should be given by you!

Only the Sheppards said...

Thank you everyone for all the feedback! I'm touched to know so many BCBAs and other professionals have read this and understand where I am coming from. I love behavior analysis, but we have got to learn how to play better with others! And as a mother who frequently hears horror stories from other moms about how rude BCBAs can be... Well, it's a shame we tarnish the good we can do by not practicing what we preach.

Catherine Martinez said...

Mollie, I'm awestruck, and I applaud you. You are a true inspiration to mothers and behavior analysts alike. I was literally laughing out loud at the picture of you being threatened by the neonatologist for teaching baby sign in the NICU. That would likely be me :) I am not a mother (yet), but as a BCBA, I strive to not be one of the smug assholes. This can prove difficult, at times, as it can be somewhat of a culture. Yet I recognize that both worlds can (and need to) be aware of, respect, and learn from the other. I'm sharing your blog, in hopes that it will open the eyes of some of us smug assholes. And for those of us who aren't, it will inspire us to keep doing what we're doing, in order to compete with, and hopefully overshadow, those who are resistant to change. Maybe we'll meet at a future FABA. Until then, keep up your heroic efforts, knowing you have many supporters who honor and appreciate you. Warm regards -- Cat.

kshea32 said...
This comment has been removed by the author.
kshea32 said...
This comment has been removed by the author.
kshea32 said...

I am training to become a BCBA. I think its so important to bring things like this to light. We all need to try our best to not get defensive, but instead take the moment as an opportunity to reflect about our own practice and how we interact with families. (BCBA is all about feedback right?) The most important thing is to create an effective collaborative team, including the family.

It is a simple:
'Don't let smug asshole happen to you' prompt, for any provider on a team.
no one has all the answers :)

Thanks for having the courage to say uncomfortable but important things!

Anonymous said...

As a mother working in an intensive ABA treatment center, and a parent of a child on the spectrum, I couldn't agree more! Thank you for articulating this so well!!

Mickey Keenan said...

Great Blog. As an academic in this field I have done my fair share of chiding colleagues for the way in which they communicate our science. Here is a link you might find interesting. It addresses the limitations of the 'dot' on a graph as something that is supposed to attract folk to successes of ABA.
http://www.imagesforbehaviouranalysts.com/the-dot-as-an-sd.html

Mickey Keenan

Anonymous said...

Your blog came in the right moment. This morning I just had a serious talk with a colleague and a friend about how it is difficult to collaborate with fellow BCBAs . We are both new in the field, just got certified and we help each other getting acquainted with our new responsibilities. This is an eye-opener. You put into words what many of us feel. Thank you.

Chris Day said...

Perfect. :) I have two kids on the spectrum, ages 10 and 6. We've been doing ABA for 8 1/2 years now, and I've worked with my share of behaviorists. I had the pleasure of working with one the past few years who actually had some true empathy and understood that I have more than one child and other things going on and couldn't always follow behavior plans perfectly. She encouraged me to try but always met me where I was. She also forged a relationship with our school district which was amazing...and made such a difference in my son's life as a result. Whenever I complimented her on this rare ability she told me that she wasn't always that way, but had learned her lesson. I just wish more behaviorists were like her!

JJ Carolan said...

I can completely 100% get behind you... we're missing a serious "bedside manner" overall as a discipline, some major "customer service" training could be useful in helping us fulfill the guidelines of disseminating our field. Thanks for your honest post; I'd like to share it.

JJ Carolan said...
This comment has been removed by the author.
Only the Sheppards said...

Thank you so much everyone for all the positive feedback on this blog! I'm still blown away that it's traveled as far as it has, but it speaks volumes to me that this is apparently an issue we all know needs to be addressed. But how? What's the next step? Where do we go from here?

Thank you all again, so so much!

Anonymous said...

I love you! Love your honesty. Your probably one of the ONLY ABA persons we would allow in 'our world'. We use what works as mom's we might always be right, or have data to back it up, we listen to our mommy voice, live here 24/7 & simply wants the best 'trip to Holland' ever.
I sadly have not had the pleasure to meet anyone treating the child ( or care givers) as people,with compassion using ABA. We know one thing that works for one might not work for another, what's helpful one minute makes the world end the next. We want to see compassion, love,simple kindness (most day we have something to fight.)
I have to say I am elated to know some 'snug assholes' have you to help bridge the whole between our two worlds. Your amazing. Truly you totally get it .. from the mom who'd be having a drink with you.
Your a rock star!!

Dena Gassner said...

Well done except you said nothing about the third perspective...respecting the child. I'm a mom, too. I work in the field. And I've found regretfully, I put far too much pressure on myself and my child. I much prefer floortime, Miller as foundations w an individualized protocol that respects the child. I would've let my kid jump more. But thanks for admitting that smugness. Also, I hate that after 23 years in the field, I can't even apply for an administrative job because I'm not bcba certified. Experience should count for something. Lastly, I am grateful for your service.

ASM, BCBA said...

This is brilliant, thank you for shouting your story to the world and calling us in the ABA world on our faults. I too believe that we are too smug and need to chuck the chip on our shoulder off a cliff. I just came back from ABAI and went to a presentation about "the ethics of marketing" and encountered the same old "why do parents believe them instead of us?" argument. You have succinctly answered that question, thank you. We pride ourselves on being scientists, but we should be working on becoming allies. I once had a parent describe a colleague as a "behavior accountant," his job was to teach social skills. We need to do better.

Anonymous said...

Thank you to this mother for her wisdom and courage to speak out. I, too am a mother - first - of a twice exceptional child. I am also a licensed psychologist, nationally certified school psychologist and BCBA-D. I am a former graduate faculty member, and have 14 plus years of experience working in schools. I have a small private practice - that never intended to start - but the need was there and it is growing because of one thing - behavior analysis needs to be =nested within a larger discipline - such as psychology or speech language pathology - AND the primary need is to connect with families. It is all about relationships and understanding kids and where families are coming from. I have had so many parents of clients tell stories of the BCBA's - or worse BCaBC's who have no concept of the need for fluid daily life, fun, acceptance and joy. Don't get me wrong - I view the world the world through a behavioral lens - and indeed was instructed in FBA's by Dr. Horner himself - yet as a psychologist - I am working with children and I need to meet them in their space - through play. Principles of ABA can be embedded in typical daily activities - this is what Activity Based Intervention is. It is all about relationships and creating a sense of community and belongingness. Then, approaching learning and behavior through the solid knowledge base of ABA - which in my view means daily activities, play based social skills, social groups, connecting with parents so they understand the functions of behavior. So, in essence, ABA is one small piece of a whole package - if used in isolation I fear you do get the smug practitioners this original blog mentions.

Angelina said...

Wonderful! Thanks for the insight. Being a sibling I feel my feet in both doors as well.

Tameika said...

Love your perspective and insight...brilliant. I have both dealt with this issue in myself as a new BCBA (the smugness that can come with this culture) and been talked down to supervisors in the past for daring to be too empathetic or patient with a client, and not keeping my blank "ABA" face on. This field is HUMBLING, the parents are amazing rock stars who deal with so much every single day and the thought of some BCBA's (or just ABA professionals in general) out there making their lives worse when they are supposed to be there to HELP them is beyond sad. Love this post!

Anonymous said...

AMEN!! As a BCBA on spectrum. I know that
A. If my mother hadn't been a special Ed teacher and a research fiend I would likely not have the speech & ability I do now. Social skills...ironically a lot of those came from an ABA job I had early on.
B. I sometimes wonder if that "gut feeling" is subconscious data collection and observation. The reason your gut is saying it is because your brain was busy with something else.

Love this post.

kgaccount said...

Thank you for posting this brave insight. Anyone would be blessed to have you as their child's BCBA. As a mother of a severely-autistic adults son, I can tell you from experience, ABA can be stressful on families. Mainly, because when a BCBA and ABA therapists enter a family, they often forget you are entering a person's home. It's not a clinic. It's not a hospital. Families are not your employer. Our home is not your home in that you can freely use our household items.

Case in point: On the first day of her job, an ABA therapist complained she didn't feel 'welcome in our home'. The reason: When we caught her in our kitchen finger punching the dial of our microwave, we asked her not to use our microwave to heat up a bowl of soup she brought for her lunch. Apparently, this pissed her off. She felt "unwelcome."

Then there was the other ABA therapist who complained about a hose blocking the path. "Have you tried to moving it to the side of the walkway," I asked.

Then there was the ABA person who thought we needed another "grab bar" in the bath, because the grab bar was "loose." "Did you try tightening it?" I asked. Apparently not.

Sometimes I feel as if therapists will throw out any "recommendation" just to look like they are observing something. It's great to "observe" things, but useless if you aren't prepared to act quickly, if you can, to mitigate the problem.

We also had a BCBA, on her first day, leave us a note. Instead of talking about our son's serious self-abuse, we were left with a concern that there was "dust on this air filter."

Parents of autistic children are often overwhelmed by trivial, irrelevant, illogical and often shockingly ignorant "recommendations" from alleged experts.

More empathy and respect for autism families is needed. You don't just waltz into someone's life, especially the life of an autistic adult and his family, and start throwing around suggestions and making complaints, without having invested time and energy into observing the entire picture. OR without first examining your own behavior. The blind can't lead the blind.

Too often, we see BCBAs show up and do drive by observations, fail to collect data they told parents and caregivers to collect, fail to analyze data and fail to follow up on their own "recommendation."

ABA therapy should be like conducting a symphony. Each musician involved is responsible for a note, and the musicians must harmonize if a standing ovation performance is to result.

Don't lay excessive burdens onto the parents or caregivers. Don't substitute data for DOING. Don't think you've got all the answers, ask more questions.

Anonymous said...

Right human's are not just observable behaviors.They are a complete organism with emotions,feelings and thoughts.BCBA folks are to narrow minded to see or know that.

Anonymous said...

In a word, BRAVO!

Sorcha said...

Amazing!! I'm a BCBA and a mother to five year old who suffered a stroke in utero. Everything you said resonated with me, and so much of it is part of what I try to teach my staff. Thank you for articulating this so wonderfully!

Cindy Boyd said...

I too am an FSU Grad and have an adult special needs son. I would be interested in a the panel Megan suggested above. Your blog spoke for many of us.

Maria Isabel Zelaya said...

Hello Mollie! It is amazing that you are living in both worlds and you can have that perspective. I bet your profession enhances your home and your motherhood enhances your work. You are an inspiration! I've always thought people in the special education field are heroes and mothers with all they do are heroes, which makes you a superhero for being both. I am currently in the process of becoming a special educator and hope to become a BCBA one day..so you have really changed my way of thinking and I will be sure to keep your words in mind always. God bless you and your kiddos! :)

Shauna Bigby said...

Good Afternoon,

My name is Shauna-Gaye Bigby and I work for New York Therapy Placement Services, Inc. Our goals is to pair working professionals with the training they need to benefit children, adults and the elderly with the help they need. We are hosting a CEU workshop on December 14th, 2015. If you, students or colleagues need credits towards their license or certification please inform them of this workshop.


Attached is a link to the registration site:
https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ebk5wlz86eb64834&oseq=&c=&ch=

--
Shauna-Gaye Bigby
Shauna.Bigby@nytps.org
New York Therapy Placement Services, Inc.
718-264-1640 - Phone
718-484-0530 - Fax
WWW.NYTPS.COM

Eric Frey said...

Using only Evidence-Based treatment is another way of saying that by the time science validates things as evidence-based, they are nowhere near the leading edge (read: highly effective) in relation to being effective. E.g., ABAers and BCBAs don't "get" the Son-Rise program, but I think many parents do.

Anonymous said...

Smug assholes, LOL, love it. There's a definite dark side to ABA. The problem is that ANYONE can become an BCBA if they just pass that darn exam, and that leaves much room for abuse of the profession and human beings. You're controlling and manipulating real-life living human beings and being paid for it - a sociopath's dream come true! At least with a background in different fields of social science, etc, you can gain some sort of empathy through those studies (humanistic psychology, etc). I work in special education and have met more than my fair share of evil "ABA therapists", many not BCBA licensed, who just seem bent on power and control more than anything else. I took a behavior management course and can write a decent FBA and BIP based on solid ABA principles; I think what separates me from some ABA folks I met, is that I truly try to connect with the student and parents.

I think this blog post on "ABA Nice Ladies" has some dark truth to it: http://realsocialskills.org/post/93977719432/nice-lady-therapists .

Anonymous said...

ABA – The gold seal technique in making money off autism.
It would be easier to be a progressive liberal in order to comfortably utilize The Lovaas Center. So much of their input is focused on politics and so little is about how to utilize the ABA system to treat autism. Seems that their priority is clear. Elect any socialist progressive democrat, regardless of their integrity, as long as they allow access to more money.
From what I have viewed it does not matter that Hillary Clinton is a lying cheating corrupt politician or Bernie is a full blown communist. Apparently truth does not matter. The Lovaas Center must be so far to the left that even if Putin or any old jihadist were to run under the Democrat ticket he or she would get the Lovaas centers undivided support as long as they received more funding. I believe that people should find alternatives to the Lovaas Center to assist their children, perhaps Caesar the Dog Whisperer could teach the whole system by exchanging canine treats with M&M’s and Oreo cookies. No wonder the LC works harder with politics, because ABA’ “Science” is simply positive/negative reinforcement consistently applied. (Dog training) Minimally applied 40 hours per week to reach maximum profit. 2080 hours per year spent with your child by a very patient ABA specialist vigorously trained to make what they do seem far more sophisticated than it really is. Very good, have an M&M or No Do Same, so that you may be trained. The end result remains the same, 30% of children naturally bounce out, or were simply introverts to begin with. Now add the 30% percent that were incorrectly diagnosed, combined with children that are known to be low on the spectrum (if at all) who marginally benefited from the training. Well, now these children are perfect for marketing purposes, placed on parade shown as success stories. As for the children that actually might have what is called high on the spectrum autism? Well it could have been mental retardation to start with, not Autism. Either way, Retardation or High Spectrum Autism, unfortunately results are minimal, possibly counter productive, there definitely will be no parading around for them. 
ABA the “Gold Seal” technique for making money off autism. Socialist supporters utilizing capitalism to gain wealth, that is the true ABA way.

Carol Tracy said...

Thanks for this great post!- This provides good insight. You might also be interested to know more about generating more leads and getting the right intelligence to engage prospects. E-Health Care Lists E-Health Care Lists implements new lead gen ideas and strategies for generating more leads and targeting the right leads and accounts.E-Health Care Lists is one of the global suppliers of healthcare mailing list & email list.Marketing to the healthcare industry, reaching the doctors and other healthcare decision makers is often an impossibletask.Behavior Analyst Mailing list & Email list

Jesse Ogas said...

Thank you for an insightful read and passionate post! I run an amazing ABA Clinic in Denver, Colorado called "Firefly Autism" and though my clinical team and I engage in lively discussions when I bring heart back into the science realm, I am fortunate that our team is truly evolved! I have the most incredible BCBA's and RBT's in the entire Rocky Mountain Region here. Though science is truly the basis of the work we do, we also are open to possibilities and of course let's take the data to see the results. The one thing my team understands is, "Every Child is Different" and as our practice continues to grow and expand, we must be open to listening and partnering instead of slamming the door!