There must be something better out there. I'm not sure what, but the more I interview functional adults with autism who received ABA-based or similar therapies, the more I know there must be a better approach. The problem is, I have no idea what that "better approach" is.
I'm not a psychologist. I'm a language arts and autism specialist. My research is on how autistic students learn to master written communication (which doesn't really mean "written" in all cases). I am not a therapist. I am not a counselor. But there has to be a better way to help students and young children.
I am not suggesting all ABA-based therapies in use today are bad. I sincerely believe ABA must be revised, researched, and ideally all connections to anything Lovaas did forgotten to history. I'd even like to see whatever evolution occurs to have a name other than "ABA-based therapy." The history and associations are that troubling.
So, understand I'm calling for more and different research. I do not like most ABA-based therapies I have observed, but I am not going to claim there isn't a starting point for research.
Because I have gay friends and family, I care a lot about their rights. I'm not gay, but I am an "Honorary Gay Man" thanks to a great friend who tolerates my difficult personality. My gay friends are among the most spiritual, caring, tolerant people I know.
So, yes, I am deeply offended when I read websites showing Lovaas employees register domains like "protectmarriage.com" and donate money to ballot measure to "defend" marriage. Yes, it upsets me that some ABA practitioners, admittedly independent and violating every APA code of ethics I am sure, offer services to help "cure" gay teens.
I am certain 99% of ABA-theory practitioners are not bad people. I'm sure a third or more of ABA-based therapy is done professionally and with major revisions to the original ABA methods. But, there is still a set of ABA adherents carrying on the original ABA legacy.
NARTH still uses ABA-based theories and celebrates Lovaas' research:
I'm sure these people believe they are doing what is right. It still bothers me.
I'm not a psychologist. I'm a language arts and autism specialist. My research is on how autistic students learn to master written communication (which doesn't really mean "written" in all cases). I am not a therapist. I am not a counselor. But there has to be a better way to help students and young children.
I am not suggesting all ABA-based therapies in use today are bad. I sincerely believe ABA must be revised, researched, and ideally all connections to anything Lovaas did forgotten to history. I'd even like to see whatever evolution occurs to have a name other than "ABA-based therapy." The history and associations are that troubling.
So, understand I'm calling for more and different research. I do not like most ABA-based therapies I have observed, but I am not going to claim there isn't a starting point for research.
Because I have gay friends and family, I care a lot about their rights. I'm not gay, but I am an "Honorary Gay Man" thanks to a great friend who tolerates my difficult personality. My gay friends are among the most spiritual, caring, tolerant people I know.
So, yes, I am deeply offended when I read websites showing Lovaas employees register domains like "protectmarriage.com" and donate money to ballot measure to "defend" marriage. Yes, it upsets me that some ABA practitioners, admittedly independent and violating every APA code of ethics I am sure, offer services to help "cure" gay teens.
I am certain 99% of ABA-theory practitioners are not bad people. I'm sure a third or more of ABA-based therapy is done professionally and with major revisions to the original ABA methods. But, there is still a set of ABA adherents carrying on the original ABA legacy.
NARTH still uses ABA-based theories and celebrates Lovaas' research:
In December, 2008, at its annual strategic planning meeting, the National Association for Research and Therapy of Homosexuality (NARTH)’s Board of Directors formally accepted the following Practice Guidelines for the Treatment of Unwanted Same-Sex Attractions and Behaviors. Their purpose is to educate and guide mental health professionals to provide competent, ethical, and effective psychological care to those with unwanted homosexual attractions and behaviors.Look at the date of this article:
Therapy: From Gay to Straight
January 18, 2011 – 12:39 pm | Comments Off
Dr. Joseph Nicolosi talks about options for those who wish to diminish and replace homosexual attractions by understanding the root causes, and to develop their heterosexual potential by healing emotional hurts in their past. Dr. …Gee, I wonder why "Comments Off" is the setting for that press release? Some of the ABA practitioners suggested by NARTH are also providing ABA treatment of autism. I started to cross-search the names and office addresses. I'm not going to "out" anybody, but it was enough to leave me disgusted. You can locate NARTH without my help. These are serious, well-educated psychologists and psychiatrists. And many speak about ABA therapies and autism to local groups.
I'm sure these people believe they are doing what is right. It still bothers me.
Hi, I am a PhD behavior analyst (research not applied). I am also (coincidentally) the mother of a very high needs autistic boy. ABA is way way more than Lovaas, and way more than interventions for autism. Lovaas gets a lot more 'credit' outside of behavior analytic circles than he ever does inside. My son gets early intensive behavioral intervention (EIBI) and is thriving with the new skills he has learned. No aversives are used in his program at all, and aversives are very rare in modern behavioral programmes and are avoided by the majority of BCBAs. Aversives are not even part of the modern derivatives of the Lovaas method.
ReplyDeleteThat some modern psychologists and behavior therapists use aversive methods to 'deprogram' gay people is totally shocking (but sadly not unknown) to me. I am an ex-Mormon, with both a gay brother and a gay sister who were treated awfully by this disgusting religion. Yes I know that aversive behavioral techniques, such as electroshock and emetic methods were used on young gay Mormons at BYU and it sickens me that the known effective methods of behavior change have been hijacked by these fundamentalist lunatics. At the core of the problem is the religious belief that 'gay' is a behavior choice, and therefore amenable to behavior change - from their POV god could not have allowed natural gays. This is just wrong wrong wrong and has led to serious abuse and a young gay mormon suicide/homelessness problem - gayness turned out to not be a simple learned behavior, but the Mormon God hasn't got the memo yet. But the problem is not unique to Mormon behavior analysts - they are enabled by Mormon MDs, psychiatrists, psychologists, educators and the like. Not to mention Mormon religious leaders who literally speak for god. I can't speak for other religions, but I am sure the same concept applies.
But to tar EIBI and behavioral programs for autism (or phobias, or smoking, or anything else) with the same brush? Please do expose any still current practitioners who subscribe to the 'pray away the gay' philosophy. But please don't poison the well against modern ABA practitioners who universally reject the contamination of the field by religious lunacy. This is not a behavior analyst problem - this is a religious problem.
Just as most educators used corporal punishment 'back in the day', all psychs and MDs were influenced by the then DSM. Kanner subscribed to the refridgerator mother hypothesis. Asperger worked with the Nazis (to be fair he was attempting to keep HFAs out of the gas chamber). Religious nutters are holding on to corporal punishment and anti-gay sentiments. These need to be challenged, but please don't throw away the baby with the bath water.
I might be incorrect, but NARTH seems to include Catholic, Baptist, and Mormon clinicians. Probably includes other denoms / faiths. It does seem likely to appeal to religious families.
ReplyDeleteI was careful to indicate this is definitely a minority of health care providers. Sadly, a few people can do a lot of harm.
Danna:
ReplyDeleteI think EIBI is a more descriptive term than ABA. Too often "ABA" is used as a term for a specific set of copyrighted training materials and approaches, leaving it to be associated with the one company and the legacy of one individual.
I still dream of discovering and addressing etiology, instead of overcoming the symptoms. I write that as someone diagnosed, not a parent or family member. I'd rather have a medical "cure / treatment" for the symptoms that disrupt my life. At the same time, as I've written many times, it would also be great if more people would tolerate me as I am, especially quirks that aren't physically dangerous to myself or others.
ABA's legacy is going to continue in the news as long as states and the federal government consider mandating insurance coverage for ABA. Instead, they should mandate a policy cover any treatment supported by substantial scientific evidence without indicating what that treatment might be -- science changes and improves our understandings of autism every year.
I am not arguing against covering all ABA, I am against making one form of ABA-based therapies the single "approved" and "mandated" treatment. Doing so seems shortsighted. Also, I've seen enough sessions to know that not every "Lovaas ABA" practitioner is properly trained (or if they are, the training needs to be updated).
Parents need choices and they should be free to select any therapy, within reason, that has been supported by research. Unfortunately, even the most effective therapies have low long-term success rates. Supports for many autistic individuals will be a life-long necessity. And that will cost someone a lot of money -- and someone else will make a lot of money.
Let us hope the research finds treatments (not one) that work for different groups of individuals with autism. Since I believe there are many etiologies, I assume many treatments will emerge.
Having become quite disturbed by your suggested link between NARTH and (real) ABA, I have combed the NARTH site and cannot find any board certified behavior analysts on it at all. The 'officers' and 'advisors' are a range of psychologists, psychotherapists, MDs, and EdDs. I do not recognise any of the names from the behavior analytic literature, but there may be some who have not listed all their credentials. I couldn't find the list of therapists that you mentioned.
ReplyDeleteThe techniques used by NARTH are not condoned by ABAI as seen here:
http://www.abainternational.org/ba.asp
Simply the use of aversives in a situation where safety is not the driving factor is against ABAI policy. Skinner would have been horrified to see behavior analsis used like that.
And a search of the two main behavior analytic journals (JEAB and JABA) using the key words 'homosexual' and 'gay' revealed exactly TWO papers. One from 1973 - a reflection of its time - which recommended fading techniques (fading out a male image and replacing with a female) instead of using aversives in changing sexual orientation. Pub Med links from this paper revealed similar papers on changing orientation from this time period, where aversive behavioral techniques were used by persons from other branches of psychology/psychiatry/medicine.
The second paper was dated 1990 and described an intervention to promote safe homosexual sex (providing free condoms in gay bars - imagine the NARTH reaction to that). Homosexuality is simply not a behavior that has attracted much if any interest by behavior analysts!
I agree with you that Lovaas looms way too large in the popular perception of ABA. Not to mention his unfortunate choice of the word 'recovered', not longer used by his successors. However, most of the parents in our treatment trust (which raises funding for ANY evidence based treatment) include EIBI as a main component of therapy, and would have never heard of Lovaas. (I am not in the US, no ASD treatments are publically funded in my country, or covered by any insurance, parents must self-fund or raise funds themselves)
Our older/verbal children work with social stories and have aids funded such as computers and software (Teachtown) to assist communication and social skills, and trampolines/gym/swim classes for physical skills. 'ABA' for these older/verbal kids involves discussing real-life incidents and rehearsing social interactions, and CBT is useful for teens and up. I regret that the options available for my older AS son were not in place when I was a youngster (I have an adult AS Dx), I would have been spared years of crippling anxiety and maybe the meds and CBT I need as an adult.
Continued in next comment due to exceeding word count (sorry)...
"Homosexuality is simply not a behavior that has attracted much if any interest by behavior analysts!" Wow Dr. Danna, oh dear me, didn't know that homosexuality is simply a behavior. I guess autism is simply a "behavior" as well. I get that your low-functioning child might have benefitted greatly from Lovaas derivatives, but perhaps, he could have benefitted from something better even more? I think that's all that's really being questioned here. And why not? You're scolding us for tossing out ABA with the bath water, but in that assumption, you're predicating it on skilled "modern" ABA therapists. IT'S NOT SO SIMPLE! I have twin daughters recently receiving ABA therapy. Both have made progress. One is celebrating joy and moving along with laughter and learning. The other, is moving along like a sad , rote clown. Progress yes, joy=no The latter's therapist claims to adhere to all the modernist talk you've laid out about ABA, no adverse's --but she's crazy negative and points out every little thing that she thinks needs tweaking. The girls are 2. I've been patient, cuz this is new, and "dour" therapist began therapy 3 months before her sister began. Latter's modern, futuristic, we live in Manhattan, and she's described as on the cusp of what is new. Not one of your fringe weirdos that you wouldn't associate yourself with. This chick, you'd snuggle up to in a heartbeat at a conference and feel validated and at the forefront of ABA. But guess what, she's awful with my daughter. Again no pure negatives but just using the therapy like an SS soldier. Is she about to be terminated this week? Yes. Should we have waited so long? Probably not, but voices like yours, make us think that we should withstand it all. Mind you, she's no crazy novelty or fringe voice. She incredibly likable to parents and fellow therapists alike. She just sucks with her charge. And it feels like its her training, mixed with her personality. Do I think she's a rare breed, no, unfortunately. A lot of trusted therapists, who are incredibly creative and talented, just are not able to put the child's personality and character first. Her huge ego comes first. Always. Obviously behavioral poop smearing reduction influenced your ABA experience (really in awe and applause) , but for my young high-functioning daughters, the lack of compassion and focus on a celebration of uniqueness, diversity and difference is thwarting one's personality. And that unfortunately is what you don't lose. It sounds like your choices were fantastic, but hope you look a bit wider and deeper at your own ABA field. Look at throwing at the baby... in reverse, please. Maybe this is not a fit for all, and that escape is rich and freeing. Simply adhering to your notion of not being extreme or sadistic, doesn't mean ABA and its wondrous money-making schemes mean they work exclusively. "Meaningless repetition, often destroys the spirit." --Yvette Bazarkaya
Delete...Continued from previous comment...
ReplyDeleteSo I certainly agree that there are a raft of treatments available in addition to EIBI. And I strongly agree that any funding should be available for any evidence-based therapy, not just one brand of 'ABA'.
But for the so-called 'low-functioning' children like my second son, EIBI has been a life-saver. When he started EIBI, he spent most of his time poking his fingers into his eyesockets (truly awful to watch), actively avoiding all human contact, if he filled his diaper he was fascinated by the contents which he smeared everywhere, and if he played with toys at all it was to line up his cars. In the absence of cars, the fingers went back into his eyes (or diaper). He took a few weeks to adjust to EIBI, but he was using PECS to ask for things within a few months (as opposed to screaming until we worked out what he wanted). It took 2 1/2 years before he was able to speak using rote-learned words; as part of his ABA assessment, the visiting BCBA discovered he could not move his tongue sideways or out of his mouth, so tongue exercises using a lollipop were put ito his program. After being a daily poo-smearer for years, we actually had him toilet trained before he went to school - a factor that has improved his and our lives incredibly, removing so many of the limitatons on his activities.
The greatest milestone of all happened after 3 1/2 years of EIBI - after multiple exemplar training substituting words in sentences for different purposes, he started putting his own words together to create his own sentences. He now talks up a storm when he feels like it. He is actually a year ahead of his class academically (EIBI kids learn to read very early as part of the program) including in maths. He continues to have severe social impairments, which his EIBI program (now a two hour session after school) addresses in turn.
EIBI has been so valuable to our family; while my son will always need support, without EIBI he would have had to be institutionalised once he grew too big to handle. I could barely cope with his behavior when he was two years old.
It saddens me to see the incredible progam that he and other children are doing being denigrated because one of many behavior analysts working in this field is unpopular for using aversives 20odd years ago - at a time when I and many other children faced daily corporal punishment in schools.
ABA is an umbrella term covering a wide field. The 'Lovaas' method is not the only 'style', and the modern inception of it, The Young Autism Project is a state of the art, non-aversive, modern program that has developed considerably from its origins (I wish it were available in my country).
I rather suspect that the Lovaas ABA therapists you write about are those who have, for some reason or another, spun off from the main project and are perpetuating out-dated methods, using now-banned aversives, or have not incorporated the new research-based natural-environment techniques that make the program more enjoyable and relevant for the child (and which make use of the 'strengths' of autism - for example teaching a child when and where he can 'stim', not trying to delete the behavior altgether.)
I would appreciate it if you did include a link to those who offer both ABA/autism and NARTH programs. I will be attending this year's ABAI annual convention in Denver this year, and if board certified behavior analysts are acting in this fashion, I would like to raise this matter with the international group. I personnally think it is a serious ethical breach, and reprehensible behavior. Please use my email address if required.
Cheers
Danna:
ReplyDeleteFrom my blog (quoting from directly above): So, yes, I am deeply offended when I read websites showing Lovaas employees register domains like "protectmarriage.com" and donate money to ballot measure to "defend" marriage. Yes, it upsets me that some ABA practitioners, admittedly independent and violating every APA code of ethics I am sure, offer services to help "cure" gay teens.
I have no doubt that NARTH and other similar groups are *not* taken seriously within academia (where I function) or within professional organizations. That is not my concern. That's the same argument others make about various cures and treatments -- there are a great many "outside the mainstream" theories of cause and treatment that are not embraced by the scientific communities, but which have vocal adherents within the autism parent community (again, likely a minority, but loud).
If you use the following Google searches, you can see how NARTH and similar groups use the Lovaas name and research:
lovaas OR aba site:narth.com
lovaas OR aba "sex behaviors"
The "Catholic Medical Association" and other similar non-AMA aligned groups sound "official" to many parents. A Catholic parent is going to trust the CMA, even if the only CMA I take seriously would be the Country Music Association. This is *not* about what serious journals, academics, or organizations believe or do -- it's about what desperate parents might believe.
Anti-ABA activists like Michelle Dawson, who doesn't want any form of ABA practiced, use the old research and current fringe groups to fight against all ABA. If you aren't familiar with her work in the Canadian legal system, you might want to read her papers on ABA submitted to the courts in that country.
Again *no one* using ABA to treat both "sexual deviance" and autism has serious standing within research communities. That's not my argument. My argument is people associated with the Lovaas Institute donate to anti-gay legal groups (and websites) and, meanwhile, anti-gay "therapists" invoke the Lovaas name and research.
The Lovaas name in the U.S. appears in almost every autism-related magazine. It is *the* name parents look for when seeking help. As a result, this allows fringe groups to appeal to *some* parents.
This is why I would like to see something, anything, other than the Lovaas name and "Lovaas ABA" used to promote treatment centers. It empowers unethical service providers and gives the totally anti-ABA activists (many of whom are autistic) a semi-valid argument to challenge ABA in the courts.
There is no "ethical breach" because the men and women practicing the worst forms of ABA are not members of major groups. They have their own organizations, with their own "official" ethics. The best mainstream organizations can do is educate the public, but we know how well that's worked on the vaccination issue or on matters of diet.
Again, I would refer you to how Michelle Dawson is now able to use the fringe of ABA (and outdated research) to fight against all ABA. At least in the U.S. the fringe groups are within the law, even when they claim to cure "gayness" -- I do not know if they are legal in Canada, Dawson is involved in the legal cases.
I'm not sure what the legal limits are. I suppose someone would have to show serious physical or psychological harm results from these approaches. Personally, I'm not going to pursue the matter further. I don't have the time and I already know how useless it is to tell parents that a fringe group is not supported by current research.
The court cases against ABA in Canada will likely start to appear in the U.S. thanks to poorly-worded insurance mandates. I hope not, but that could be the next step.
I was e-mailed a question directly that I cannot answer: would the insurance mandate to cover ABA include payments to alternative practitioners. Honestly, I have no idea. None. I am not a lawyer and don't know how insurance works.
ReplyDeleteIf anyone else knows, that's a pretty important question. It would mean, potentially, taxpayer subsidies from state insurance co-ops would be funding these outliers. I doubt insurance would pay these people, but I have been wrong before and will be wrong again…
Insurance mandates are only for employer sponsored insurance, not privately funded insurance. Privately funded insurance, where your company self insures basically, isn't covered by mandates. Most people who work for larger companies work in self insured environments.
ReplyDeleteBy the way, ABA is like a religion. You'll hear the same things repeated over and over again. I put my son through 2 years of Lovaas. It was a waste of time and money and did a lot of damage.
ReplyDeleteThere has been no study that has replicated Lovaas that was done by someone that wasn't a former student or employee of Lovaas. Not one.
I checked on the VA law, which requires coverage of ABA by any employer with 50 or more employees and all government departments (state and local). The ABA provider does *not* have to be a therapist belonging to a recognized board, but the provider must be employed by or overseen by a trained psychologist or M.D. (including psychiatrists).
ReplyDeleteThere are now 23 states with ABA insurance mandates. Some require a trained therapist be the ABA provider and some do not. The coverage ranges from $3000/yr up to $65,000/yr. The laws are generally written to endorse specific ABA practices, but some are more explicit than others.
In other words -- it is a tangled web of messy laws.
C.S., I hate to correct you, but self insured plans are not required to cover ABA no matter the plan participant size. I've took the liberty here to copy for you the pertinent language which you can find on the Virginia Corporate Commission website:
ReplyDelete"self-insured plans are exempt from insurance laws, including those that pertain to mandated benefits, appeals, and consumer rights."
Here is a cached link to the website with the relevant bits highlighted:
http://goo.gl/pDTv5
That's not really a correction -- more a clarification. Some employers are self-insured, but I've worked for large organizations that were standard Blue Cross plans. The big thing to me is that it doesn't apply to a great many employers, regardless of what the mandate might seem to promise.
ReplyDeleteSome self-insured companies still use outside administrators, but I will assume those are still considered self-funded and exempt.
ABA supporters might be thinking they "won" something they didn't really win.
Oh, and the states with $3000 coverage? I have no idea, but that cannot possibly cover more than a few months of ABA -- at best.
ReplyDeleteC.S., if you worked for a large employer, Blue Cross was just the administrator (they get fees for administering the plan and processing claims). You were most likely in a self insured plan. Most companies that have revenue over $20 million are self insured. Most state mandates are meaningless to the majority of people with private insurance. Because the mandates were federal, that's why you hear this "freedom restriction" from Republicans. Obama's health care law does restrict some freedom of private employers, such as forbidding them to exclude pre-existing conditions. That's the freedom they are talking about.
ReplyDeleteNearly all self insured plans are administered by 3rd parties, like Blue Cross.
The only mandates that matter for most people are federal ERISA mandates which apply to even self insured plans. That's why Republican's were upset with Obama's plan because the mandates were made federal and thus incorporated all those self insured plans of corporations.
Here is a very good primer to understand insurance and the difference between fully funded and self insured plans and how ERISA and state mandates effect each plan.
http://www.dora.state.co.us/insurance/consumer/2009%20docs/consFaqERISA010909.pdf
$3000 coverage will cover approximately 1 month of Lovaas therapy.
ReplyDeleteThe real winners are the companies providing any service covered by these plans. I linked to the summary of official state laws in the current blog post.
ReplyDeleteI wouldn't place any of this within insurance. It seems more appropriately classified as educational spending, but those budgets are shot, too. Quite simply, there isn't enough money -- someone is going to make some pretty tough choices and no one is going to be happy.
Many new therapists who are about to begin working with children with autism might be concerned about how to make themselves reinforcing. The main key to a proper ABA home program is for the therapist to pair themselves with highly enjoyable activities in order for teaching to occur. When a child knows that when you come over, good things happen, the ability to teach this child and reinforce this child becomes strong.
ReplyDeleteYes, some insurance companies may "cover" aba therapy. However, the question becomes "Can you still afford the services?" There are copays. Even if you have a low co-pay it can become expensive. Am I right? Any other input regarding ABA therapy that is actually covered without compelling parents to pay an additional $1,600+ a month would be appreciated. Perhaps I am wrong.
ReplyDelete