Patty Bashe's Blogging Adventure
June 8, 2013
Last week, my son Justin called five NY state legislators and began his pitch for BCBA licensure with this introduction: "My name is Justin Bashe. I am twenty-one, I have a type of autism called Asperger's syndrome, and I vote."
And this week, he--and my husband and I--are going to do it all over again. Because the New York State Legislature packs it up and goes home in about two weeks from today (June 8). This bill could come up for vote at any time before then. Please make your calls early and often.
You can read on my homepage (www.pattyrbashe.com) about why licensure for Board Certified Behavior Analysts is desperately needed. Here I want to write a bit about other things BCBAs and the science of applied behavior analysis (ABA) have to offer all of us.
There are many purported therapies and interventions whose advocates insist that they treat autism or the "core features of autism" or something along those lines. Justin's life as a person with ASDs is pretty neatly divided between his life before I went back to school and began learning ABA (when he was about ten) and his life after that. I confess, the only reason I ever learned much about ABA was because when Barbara Kirby and I were writing the first edition of "The OASIS Guide to Asperger Syndrome," we had to address the concerns of parents who had contacted the OASIS website message board with questions about it.
My opinion then, based on our bad experience (recounted on the homepage and elsewhere) was negative, to say the least. We had embraced and tried a range of unproven therapies and interventions that not only cost us a fortune in time and money, but that changed nothing (with one exception, which I don't mention, because Justin is the only person I know who appears to have benefited to the extent that he did). I should also add that some of these interventions came to us via taxpayer-funded treatment given to him in school. Again, no details: the professionals involved were only doing what they had learned to do (and were licensed to do), and were measuring effectiveness in the terms applied by their discipline and by a different set of criteria for what constitutes appropriate curriculum, skill mastery, and so on, than I would use today.
I arranged to interview Dr. Bobby Newman, a leader in ABA, in my professional journalist mode. I didn't expect to walk away from his Long Beach office with a new view, not only of ABA but also of autism and learning and choices and independence, AND a new career direction. But that's what happened.
As a BCBA, I am proud to support and share the values of my profession: scientifically supported, evidence-based, data-driven treatment; every individual's right to effective treatment, to acquiring a repertoire of skills and behaviors that are socially significant and that will provide him/her with the opportunity to live in a wider world, make informed choices, and experience independence to the extent that is safely possible. After years of hearing professionals--well-meaning, fine people all-- "explain" that Justin did this or that (or didn't do this or that) "because" he "had autism," "had AD/HD," "had dyslexia," etc., it was refreshing--no! life-changing--to have a new prism through which to view the problem.
Justin does not do anything (or does something) "because he has autism": he does them because he either lacks the skill or the practice or both to do something that would work better for him. The freedom from the mentalistic jargon that explains nothing and the helplessness of "experts" who sincerely believe that by describing his problems and then explaining them by citing the problem again at the end ("He has AD/HD because he can't pay attention. And he can't pay attention because he has AD/HD") is indescribable. It has changed Justin's life for the better in more ways than I can count. (Well, actually, being a BCBA, I probably should find a way to quantify that data and graph it, too. Maybe another post.)
In the meantime, please:
What: NYS BCBA Licensure Bill S4862A / A6963A
First, your own state assembly person and state senator, and then these fine people who are helping make this happen:
Senate Republican Conference Leader Dean Skelos at 518-455-3171
Senate Democrat Conference Leader Andrea Stewart-Cousins at 518-455-2585
Assembly Speaker Sheldon Silver at 518-455-3791
Senator Fuschillo at 518 455-3341
Senator Dean Skelos at 518 455-3171
Assemblyman Morelle at 518 455-5373
Assemblyman Zebrowski at 518 455-5735
Thanks in advance for helping to make the world a better and safer place for individuals with ASDs and their families.
And thank you for reading,
February 10, 2013
In the wake of autism insurance reform, more states are requiring that health insurance policies cover health care services for individuals with autism spectrum disorders. (Each state covers this differently; consult Autism Speaks's Advocacy page: http://www.autismspeaks.org/advocacy. I cannot respond to insurance questions.) While some states have chosen--prudently, in my view--to specify Board Certified Behavior Analysts (BCBAs) as providers, others have deemed virtually any "licensed professional" in a "related" profession to be qualified.
First, a personal note: Before I entered this field, three young women, "behavior therapists" state licensed in other professions came to our home. They were highly recommended by a pediatrician known for treating kids with ASDs; only after I finished my own training in ABA did I realize that she knew less about ABA than I expected. Within an hour, they had dismissed the advice of other professionals (namely, MDs), informed me that my husband spoke to our son "the wrong way," and vowed to "break" my son's "train habit" (even though we did not cite this as a "problem"). Fortunately for our son, our home program ended abruptly the day one of them literally cornered him in his room and shouted at him until he began crying and engaging in loud, panicked echolalia (which was rare for him otherwise). As a BCBA and someone who supervises students pursuing their BCBAs, I know now that they were inexperienced and poorly trained. They believed that behavior interventions work on a frighteningly basic calculus of "reward" and "punishment," and that the more intensely a client reacts to your behavioral intervention, the more assured you can be that you "hit the spot." Or, as one equally inept "therapist" told a parent I worked with later--while a two-year-old, nonverbal toddler with autism was strapped into a high chair crying to the point of vomiting--"ABA is letting your child know who is the boss."
No, it is not!
In response to various incidents of individuals being treated with "behavior modification" strategies ranging from ineffective and unethical to physically and psychologically harmful, the Behavior Analyst Certification Board was founded. You can learn more about the BACB, its mission, and professional behavior analysis here: http://www.bacb.com/.
Right now, in New York State and many other places, the practice of applied behavior analysis is permitted by professionals who may not have the education, experience, or training to do so safely, effectively, and ethically. There appears to be a general misunderstanding among some regulators, insurance professionals, and professionals in other disciplines regarding what ABA is. The idea that one can attend a handful of conference presentations, take a course or two on autism, work in a classroom or other setting where one carries out (but does not design, monitor, or scientifically analyze) ABA interventions, and then be considered qualified to provide ABA is misinformed and dangerous.
Those of us who have chosen to obtain a BCBA recognize the awesome responsibility we have to the individuals we treat, their families, and the community at large. Despite having practiced ABA in the field for years, my colleagues and I recognized that there was more to learn. We also recognized that when dealing with vulnerable populations and addressing issues with serious health, psychological, safety, and ethical dimensions, there was a need for not only professional guidance, but a structure in place to address consumers' and practictioners' questions and complaints. That place is the Behavior Analyst Certification Board.
We voluntarily submitted to the rigorous, intensive five (now six) graduate-level, BACB-approved courses and the 1,500 hours of supervised practice (which may cost an additional $3,000 to $7,500 to hire a supervisor) for the privilege of sitting for a written exam that currently just over 50% pass. After that, there are annual renewals, triannual recertification, and continuing education credit requirements to meet to maintain certification. If you want to get some idea of what the training and requirements look like, check out the Fourth Edition Task List--which dictates what BACB-approved coursework must cover--at http://www.bacb.com/Downloadfiles/TaskList/BACB_Fourth_Edition_Task_List.pdf.
As a parent, I would not ask my child's pediatric psychiatrist for advice on improving his fine-motor skills, nor expect his speech therapist to explain to me why one SSRI might work more effectively than other. I would not consider his social worker my best resource for an answer to how to teach personal care, or think that his psychologist was any way "lacking" because she failed to produce a functional behavior analysis that included quantitative data: numbers (and, believe me, after my son's twelve-plus years of public special education, I have a dozen of those in my files). Interestingly, however, in some states--such as New York--every one of these professionals is deemed to be as prepared to provide applied behavior analysis as a BCBA. And, in some cases, further qualified to be reimbursed by health insurance companies to do so. Yes, there are professionals in those fields who have extensive experience with children like yours, who have worked with ABA. In fact, there are some among them who do hold BCBAs in addition to their other credentials. And not having a BCBA does not necessarily mean that one is not qualified. What it does do, however, is leave every parent on his or her own to determine how skilled, experienced, and knowledgeable someone really is.
Coming next week: Ten Key Questions to Ask Your ABA Provider
November 27, 2011
Why is independence so difficult to achieve? Why are too many young people with autism spectrum disorders unable to access the environments and circumstances in which they might find acceptance, praise, friendship, tolerance, welcome, and satisfaction?
As parents and teachers, it is easy and natural to feel compelled to help, assist, support, and attend to someone for whom going about the business of everyday living is challenging. After all, this is a nice thing to do, isn't it? I remember thinking, "So many things are so difficult for my son. Why shouldn't I tie his shoes for him?" At the time, that line of thought made complete sense. It is uncomfortable and at times saddening to see someone you care for struggle, especially when you can so easily make that struggle vanish.
When I talk to other professionals about overdependence (what some call "learned helplessness"), I agree with them when they say that independence is crucially important. But I do not always agree with them about how the cycle of dependence and helplessness began. Despite reading piles of textbooks and countless studies, I have yet to see anything about parents that even begins to touch on the visceral sense of helplessness parents experience as a result of this diagnosis.
As a behavior analyst, I've been trained to look for the consequence of a behavior that makes that behavior more likely to occur again. If you look at the behavior we'll call "doing for" a child, it's easy to see why parents and others do this--again and again and again. "Helping" is unique among things parents of kids with ASDs do in that it works, it helps, and it solves (temporarily) the problem. In the few seconds you pour the juice or button the jacket, you buy a quiet moment and push away another reminder of the countless ways this diagnosis can undermine your child.
Clearly, the road to dependence is paved with good intentions and powerful reinforcers. But it's also a road to nowhere, or at least nowhere you or your child will want to be tomorrow. It can be difficult to give up the comfortable predictability of continuing to do for your child. Creating the environment that fosters independence rather than dependence takes planning and work. However, it is vitally important to your child's success and--most important--his happiness. Real self-esteem is based on what you can do, not how wonderful, smart, brilliant, cute, or creative others tell you that you are. Children on the spectrum are no different.
Thank you for reading!
Comments have been disabled for this post
November 5, 2011
Raising a child with an autism spectrum disorder means wearing many hats: teacher, advocate, lay authority (to name just three of dozens). There are countless decisions to make--about education, medical treatment, interventions, and therapies--and sometimes so little information, or such conflicting information, it's hard to feel like an informed consumer. Ultimately, however, when it comes to choosing your child's path, you are exactly that: a consumer.
When my son was first diagnosed, in 1997, it was a different world. There was no widespread autism awareness, no characters on hit TV series with ASDs, no recognition that what had happened in our family was more than a 1-in-10,000 inexplicable fluke. Temple Grandin was not a household name; no one's bumper bore a multicolored jigsaw ribbon. When my friend Barbara L. Kirby launched the OASIS (Online Asperger Syndrome Information and Support) website in December 1995, a search of the internet (if you were tech-savvy enough to do one back then) would have yielded a handful of papers, at most. (You can visit OASIS at http://www.aspergersyndrome.org.)
Nearly sixteen years later, there is more information available than we can begin to process. The appropriate intervention in the right hands can change a child's life. But the wrong intervention--in the wrong hands, for the wrong child, at the wrong time--can be a waste of time and money or worse.
In the late 1990s, when I considered interventions for my son, I believed that any approach that offered hope was as worth a try as anything other. After all, I reasoned, you never know. Coincidentally, "Hey, you never know" is now the advertising catchphrase of the New York Lottery. What I didn't know then was that any number of "therapies" we tried were about as likely to pay off in a substantial change in my son's symptoms and behaviors as I was to hit a million-dollar jackpot. Of course, that's not what those who promoted these approaches told me. Each could show me the handful of "miracle" outcomes; usually these were written about in parent-authored books or popular magazine articles. Looking back, I'm amazed at the fact that I never actually met the parents of these lucky children or the children themselves. And as for the others--the vast majority of kids whose results were not so impressive--well, the interventionist would say, autism is complicated, every child is different, the influence of a conflicting intervention or food in the diet or ingredient in a supplement got in the way. Someone wasn't consistent enough with it, someone didn't really understand it, and so on. It was to the intervention's or the interventionist's credit when it worked. It was anyone's and anything else's fault when it didn't.
When you consider interventions, think like a consumer. Obviously, there's more emotional investment in the outcome of a therapy for your child than there is in choosing, say, a new toaster. But you do want to know:
1. How does it work? Can you refer me to books, websites, studies, or professional organizations where I might find objective information on this intervention? Which professional, peer-reviewed journals have covered this intervention?
2. What information supports your opinion that this is appropriate for my child?
3. Specifically, what problem, behavior, or symptom are you going to address? What signs should I look for that will indicate this is working? What signs should I look for that may indicate that it is not?
4 What is the overall goal, or objective, of this intervention?
5. What aspects of this intervention can you teach me, the parent, or others to carry out?
6. How long do you estimate it will take to reach the goal?
7. How much do you estimate this will cost, in terms of time, money, and changes in our family's routine or lifestyle?
8. Looking at the other interventions my child now receives, do you see any that might conflict with or diminish the effectiveness of the one you propose?
9. What can we, teachers, and others in my child's life do to ensure that the positive outcome is maintained?
Thank you for reading!
Comments have been disabled for this post
October 22, 2011
This is my first blog posting, so I'm not sure exactly what I'm doing or where this will go. Though I do love to hear from readers, this blog is not open for comments simply because I don't have time to monitor comments. Call me old-fashioned, but I believe that people come to websites about autism and Asperger syndrome for information, not to debate any number of ASD-related social, medical, or political controversies. There are plenty of other places for that.
As you will read in my new book--and its predecessor, The OASIS Guide to Asperger Syndrome--one thing I feel most strongly about is helping parents, friends, and professionals to recognize and understand the critical difference between evidence-based, scientifically evaluated interventions and everything else. With a young child, it is easy to feel you have all the time in the world. However, I have yet to meet a parent of a child of any age who feels that there is nothing left to teach, to do, to change. Our kids have more to learn and less time to do it in. Every moment counts, and one goal of my new book is helping parents make the most of those moments to build the real-life skills kids need to lead the lives they desire and deserve.
Thank you to everyone so far who has given my new "baby" such a warm welcome.
Thank you for reading!
Comments have been disabled for this post