Saturday, May 13, 2006

Some Thoughts Regarding IBI

ABA/IBI has been subject to some negative posts recently, most notably by Prometheus and Autism Diva. I would suggest that their criticism is both simplistic and off the mark in at least some cases, especially in my daughter's case.

In Prometheus’s case, he starts from the perspective that the goal of ABA is to rid the child of ‘autistic behaviors’:

"So, the ABA therapist uses a slight modification of classic conditioning to get an autistic person (usually a child) to either stop doing behaviors that are considered "autistic" or get them to do behaviors that are considered "normal". If ABA manages to get an autistic person to make eye contact, respond to their name or stop flapping, their scores on the various autism rating scales will move toward less autistic (i.e. "improve").

The big question is this - does ABA actually "treat" autism - or just treat the "symptoms"? Does reducing the behaviors unique to autism equate to reducing autism? Or is it just putting on a different coat of paint?”

At least in the case of the Bear’s IBI program, the premise above is incorrect. The goal of her program is not to get her to ‘pass as NT’ - before she was enrolled, the program head very clearly told us that the IBI program would not make her ‘normal’. Instead, it is to teach her skills that will enable her to better and more independently function in the world. Absolutely no effort is expended to get her to act ‘normal’. Instead, she is developing her gross and fine motor skills (e.g. learning how to walk up and down stairs or turn a doorknob), looking at books, learning to communicate through PECS, etc. When she first started ‘school’ at 1 yr 11 months a great deal of effort was expended to help her learn to walk (which she was not doing at that point). Rather than viewing this as ridding her of autistic behavior, we interpreted it as helping her to gain mobility to explore her world. Given her enthusiasm for walking (which she clearly enjoys – she’ll lead the way over quite impressive distances), I’d guess that she would agree.

I know more than a few parents who have not been able to afford private IBI and are stuck on the government-funded waiting list (more below). It might be easy to say that we are unique in not looking to IBI to ‘recover’ our child, but the parents I know also do not have this expectation. Like us, they want their children to learn and develop. Lovaas may have expectations of ‘recovering’ autistic children, but the parents I talk to have more modest goals (which is not to say they would or would not support ‘recovery’ or a ‘cure’, but rather that they don’t see ABA/IBI as delivering this possibility). This is anecdotal, but I’ve noticed that ‘anecdote’ is a label that generally gets attached to only those observations with which one disagrees.

Prometheus again:

"So, what exactly are parents accomplishing by "treating" their children with ABA? Undoubtedly, some of the behavioral manifestations of autism that they (the parents, not the child) find most bothersome may be eliminated. This is good for the parents, I suppose, but is there a corresponding benefit to the child?

Not sure about that.

Again, the child may be considered to benefit because the behaviors that mark them as "different" are reduced. However, since these behaviors don't appear to be bothering the child, the "benefits" would seem to be reaped by the other members of the community who are not "disturbed". And, since many autistic children (and adults) report that their "autistic" behaviors (e.g. flapping, avoiding eye contact, etc.) are comforting, the community's "benefit" is realized at a cost to the child.

Bummer."

Again, Prometheus is both assuming and evaluating against a goal that is not universally held. No effort is made to stop the Bear from stimming. We’re not looking for IBI to do this, since we view her stims as a method of communication, self-orientation, and comfort. Her IBI program feels the same way. Instead of trying to make my daughter look NT, they’re trying to teach her the skills that will help her as a human being, regardless of her neuro-orientation. In our views regarding stimming I freely admit that we may be a minority among parents of autistics.

Prometheus:

"But, at least ABA improves something about the autistic person's ability to interact with the outside world - right?

Not sure about that.

Let's say I train my goldfish to maintain eye contact with me by only feeding him when he is looking right at me. Has this made him more able to "relate" to people? I doubt it. The same thing applies to ABA and autism. It may alter the behaviors that other people find objectionable, but it is unlikely to change anything fundamental about the autistic person, any more than training me to drool when I hear a bell ring will turn me into a dog.

Woof. Woof, woof!"

IBI taught my daughter the first two stages of PECS, as well as helping her to understand the purpose and value of gesturing to communicate. When she gestures, they follow her lead, and they believe that it is important to encourage this. She can now take someone by the hand and lead them a considerable distance to the object of her desire and then communicate to them what she wants, despite being unable to form a single word. As she learns to discriminate between the PECS cards her communications abilities will improve further. Note that none of this is making her any less autistic, but all of it is enabling her to better interact with those around her, make her needs known, and get them met – including her need to socialize and have fun.

Prometheus wrote:

"I suppose that some people will argue that ABA "therapy" (I prefer to call it "training" - that seems more honest) allows autistic people to "get beyond" the obstacles that keep them "locked in" to their autistic world. That's an interesting idea, but completely without any data to support it."

See above re: walking, gross and fine motor skills, PECS. Yes, I’m sure that the Bear would have learned to walk without IBI (and we were doing a lot with her outside of IBI too). But the issue is one of timing, in that the sooner she could walk, the sooner she could further explore and learn from her world. I go by the assumption that learning is exponential, not incremental. The same applies to gross and fine motor skills. There are some autistics who state that they have an inability to perform tasks such as tieing shoe laces, making toast, or blowing their nose (links available on request). IBI has been able to teach my daughter tasks that she has not independently mastered, and unless someone can guarantee that she will learn these types of skills independently (and the fact that others have not learned them gives me some pause) then I see nothing wrong with devoting some time to attempting to teach them to her. Obviously we recognize that she may not be ready yet to learn some tasks, but there are plenty of tasks that she is ready and currently learning to complete. As for non-anecdotal support data, Regan gave a couple of links on Prometheus’s blog that may demonstrate ABA’s effectiveness. Jonathan Semetko estimated that there are 500-1000 peer reviewed and published studies in autism/ABA, so I’m sure that he could come up with a few more links if asked.

Prometheus wrote:

”ABA is no different - at its core - from all of the other behavioral modification techniques used on humans and other animals. The desired behaviors are rewarded and the undesired behaviors are punished. Now, I'm sure that ABA's supporters will argue that punishment ("negative reinforcement") is no longer a part of ABA. However, the continuous repetition of the command or "physical prompting" (especially to people who are averse to physical contact) has to be considered a punishment.”

First, no negative reinforcement or aversives are used on my daughter. Period. Second, she does not get any food reward. The only exception to this is her ‘milk’, which she requests with a PECS card as little or as often as she wants, with no limit. Neither her ‘milk’ nor her snack is used as a reinforcer. She does not do endless repetitions of anything - she is 2 years and 10 months old, so attempting to force a lot of repetition would be pointless. Instead, she does a few repetitions of tasks that are designed to be fun, stretching her capabilities but also allowing her to succeed with effort. Much of her ‘reward’ is the thrill of accomplishment, which I know is a strong motivator for her. (At home I often see her try something over and over, not as perseveration, but to learn the task - e.g. navigating a step up and down – and she is clearly and visibly quite proud of herself when she masters it). If she becomes bored with a task there is no point in going on with it, at which point they transition into something else, but normally she does not do the task long enough for boredom to set in. And instead of being averse to physical contact, my daughter is very physical and will initiate and sustain physical contact. If she doesn’t like contact she will very clearly communicate it.

Camille’s post was also to a large degree about aversives, as well as her perception of the personality failings of Ivar Lovaas.

Camille writes: "Of course, not all ABA is like what is described in the 1965 (my emphasis) article about Lovaas and his lab. Some is worse. Some is less overtly abusive. Some teaching of autistic children and adults might just be teaching and called ABA wrongly. Parents who have tried it with their kids are not evil. It's frequently offered as the only thing that can possibly make an autistic kid pass for normal, and it's hard to pass by an opportunity to make your autistic child normal...for most parents... given the climate of shock and despair that seems to surround an official diagnosis of just about any serious disability in a child."

My understanding of ABA is that it involves the breaking down of more complex behaviors into smaller incremental steps and then teaching these steps through repetition until they are mastered, with reinforcers to reward compliance and/or success. Obviously there’s more to it than this, but the ‘more’ does not include physically abusing the child. While it is fair game to point out historical issues with ABA, to try to link historical use of aversives to current practice may be just a touch misleading. As well, implying that the only goal of ABA is to make a child ‘normal’ is misleading in many cases. The goals of the programs that I have come across have always been to teach the child skills, not to allow them to ‘pass for normal’. Perhaps I travel in different circles than most others, but I’ve yet to come across an ABA program or an ABA parent who has ‘normal’ as an ABA goal. Skills and accomplishments? Yes. Normal? No

As for Ivor Lovaas, I’d suggest that criticism of him, if accurate, does not necessarily invalidate his methodology, any more than any potential failings of Prometheus invalidate the theory of evolution that he teaches or Camille’s potential lapses invalidate the concept of neurodiversity. Ad hominems can be used by both sides, but some only believe they count as such if they are the victim.

Another criticism leveled at ABA is the cost of the program and the requirement for 40 hours per week, with the comment about how that looks to be a convenient workweek for the ABA therapist. In my daughter’s case, she goes to school five mornings per week, or fifteen hours in total. No one has suggested that she spend more time than this at her age. The 40 hour work week comment doesn’t make a lot of sense given that as well as the therapy, a considerable amount of time is supposed to be spent capturing and documenting the daily results and planning for the upcoming sessions - implying that the therapist really wants to work a 45 hour week? Or perhaps this is just a cheap shot.

As for the cost, I’m paying for my daughter’s program out of pocket, although with a minimal amount of support from my employer’s health plan (less than 10%). I would suggest that the government should be paying for the program. We’re on the waiting list - after a full screening assessment - suggesting that the government agrees with us. But because of a recent ruling that no child can be ‘kicked out’ of the funding program at six years old (which I also agree with), combined with the provincial government’s unwillingness to increase funding, the result is that we will be paying for IBI for a while yet (this is being challenged by others in court).

Do I begrudge the amount that I have to pay? No. My daughter has 1 to 1 instruction. Given that her therapists are not independently wealthy and doing this as a hobby, I think it is reasonable that they get to earn a decent living - to eat, pay for shelter and to have access to the rewards that many of us expect to result from employment - and to be content enough in their job that they’re not constantly looking for something better paying to survive. I also expect them to be competently supervised, for the program to have a knowledgeable head, and for the school to be able to both pay their rent and heat (and cool) the building in which the instruction is given. So do I begrudge paying enough to ensure that this happens, so that the Bear learns in a safe and secure environment? No.

There is a case to be made that ABA is not the best teaching method for all autistic children. It is definitely not the only method. We are open to other options, and the Bear has lots of time for implicit learning. Even within the IBI program, time is allotted to ‘follow her lead’. But we also feel that there are some skills that she needs to learn, including self-care skills, and as long as she is capable of learning them then we would like to see this happen. If someone can point out a better teaching method then we will definitely listen. Our interest in IBI is practical, not ideological. But until then, we intend to devote some of the Bear’s time to IBI, which we can see has clearly benefited her. We don’t expect it to make her non-autistic. But we do expect her to learn and to be able to demonstrate her learning outside of the classroom.

So far she has shown that this is working, so we will continue with the program. When Prometheus asks, who gains from ABA, our answer is that our daughter does. Is all of her development related to IBI? No. Some is the result of her own development timetable, and some is the result of our interventions. But IBI has definitely helped, and we have concrete examples (e.g. her PECS proficiency) that she could not have picked up elsewhere. Attacking ABA over its ability to allow autistics to ‘recover’ may be easy, but it is also an incomplete analysis that misses the point. For many of its practitioners who operate outside of autism’s ideological wars, ABA is intended to teach. And measured by this yardstick I would suggest that for some children – including mine - it is successful when used for this purpose.

7 comments:

Kristina Chew said...

My husband and have come more and more to think that more than a few ABA providers made a fatal marketing mistake when they claimed that ABA would "recover" a child from autism. During the two years that Charlie was not in an intensive ABA or was in a more "special ed" sort of program, he made no gains in his academics or speech and became overloaded with sensory issues, behavior problems that became dangerous to his health, and more that took a huge toll on him. And, as it turned out in Charlie's case, a return to ABA has meant he has been able to learn again and to be--and this is surely a major goal--a happy boy.

Jim, my husband, wrote this in a book review of psychology professor Laura Schreibman's The Science and Fiction of Autism:

"As an academic researcher (though hardly a scientist) I would not care to invest my reputation in a single study showing that 9 of 19 autistic children were "indistinguishable" from other children after receiving highly intensive behavioral interventions. As the parent of an autistic child, on the other hand, I would (and have) quit my job and moved halfway across the U.S. in search of an educational placement for my son grounded in these same behavioral principles, not so that he can become 'indistinguishable' from other children but so that he can be taught in the way he learns best."

Thanks----

Anonymous said...

Several months back, on another blog, I was in a correspondence with you over a matter in which I was unable to continue the discourse.

I came here, to your blog, to see if there was a way to contact you privately, in order to address some information you had requested per our discussion. But there is not a way to contact you privately. Have you considered turning on the feature that would allow someone to reach you privately via this blogspot blog?

Thanks in advance.

Ian Parker said...

Hi Anonymous,

Yes, I remember this discussion. It is good to hear from you. I'll investigate this feature (the various blog options are still new to me - terra incognita), but in the meantime, you can reach me via the e-mail option on the user list at Kev's Autism Science Forum.

Let me know if this option is acceptable to you.

Thanks,

Ian

Wade Rankin said...

I know more than a few parents who have not been able to afford private IBI and are stuck on the government-funded waiting list (more below).

For some of us, the issue is not just one of expense, but of availability. When you live in a geographic area where there is a dearth of qualified practioners, all the financial resources in the world cannot help.

...the issue is one of timing, in that the sooner she could walk, the sooner she could further explore and learn from her world.

Thank you for making a too-often-overlooked point about all interventions. It is not just about where you end up, but also about laying the right foundation for further progress.

María Luján said...

Hi Ian, Kristina and Wade
You certainly presented several of the most important topics for me: resources and availability. Many times resources in terms of qualified practitioners are absent (or they are 700 km away) AND the costs are really prohibitive for many.
It is certain that all interventions must be as soon as possible. But unfortunately many many times the answer you receive is no intervention available or recommended more than ST, OT and psychology. The search for alternatives is for each family a solitaire journey with a lot of responsability that must be assumed about the research, the risks/benefits analysis and the very difficult search of doctors prone to help in the conformation of a complete team when parents are and have an extremely important role. The construction of responsible and informed decissions, whatever the intervention selected ( or not) is or at least, has been for us-my husband and I, a really almost solitaire path.
Thank you very much for your excellent post Ian
María Luján

Ian Parker said...

Hi All,

Thanks for the comments, and María Luján for the compliment.

We're quite fortunate that we live in an area in which decent private IBI is available (decent publicly funded IBI would be better, but I'll take what I can get). I’m not sure how widely available it is in Ontario, but I definitely feel lucky. I know of many who want IBI for their children and are ‘approved’ as we are, but the waiting list is moving at a glacial pace.

We also have a good local support organization for speech and language (I still prefer 'communication') therapy, which is publicly funded and not too rationed. It can be a four to eight month wait to get into the program, but once you’re in then support is good. This is the group that is working with us on PECS.

The big missing here is OT. There’s not a lot of it available. After the Bear’s diagnosis we had access to an OT for one visit per month for a few months, and then that dried up. Another support organization has granted us access to an OT for one session per month (which the OT has managed to stretch into more for us), but this will end after the Bear’s third birthday. I’m quite impressed with our OT. She’s quite good (and she studied under Ellen Yack, who is one of the bright names in OT). She has definitely gone the extra distance with the Bear, always looking for solutions, including teaching us the Wilbarger protocol, which we’re now starting. I asked her about the ‘shortage’, and she said it is partly due to the fact that OT with an ASD focus is still pretty new around here, and there are not a lot of people with the training. No surprise, but the shortage also has something to do with demand. Once we lose our OT access we’re looking at either the people who provide the communications therapy (they have one OT, who also seems good, but is in high demand) or potentially private (ouch).

Regardless, we’re still very fortunate to have the support that we do. Watching the Autism Every Day video was a real eye opener for several reasons (Wade, I’ve been wanting to comment on your posts on this but am still formulating what I want to say – I’m a bit slow on this), but one of the things that I took from it was the dearth of support available to the four families. I don’t agree with every aspect of the video (although I’m also very conscious of “there but for the grace of God go I”, and there’s no guarantee that we will not end up in the same place one day), but it was heartbreaking to watch the families struggle, and not have access to the help and support and learning that we all need.

On the lucky side again, a couple of days ago I called the local school that the Bear may be attending two years from now to set up a meeting with the Principal. We had a good chat, and we’re working out schedules for her, the local school board autism support expert, and me to meet. The Principal sounds very supportive, and noted that the Bear would not be the only child with autism in the school (it is not a big school). She also said that while we need to determine whether mainstreaming is the right choice for the Bear (it is our choice to make), she supports mainstreaming whenever possible (with aids as required), not just for the child’s benefit, but also for the benefit of the other children, who learn tolerance and inclusiveness from having special needs children side by side with them (her thoughts, my wording, she said it better than that). I thought, what a wonderful way of looking at this, and again I feel very lucky.

María Luján said...

Hi Ian
I am glad you are receiving so much support from educational institutions. It is a real blessing (and fortunately we have access to very dedicated teachers and therapists so I consider us also lucky).
About the video-that I could not see but I have read several comments in Wade´s. Mother Vox´s and ballastexistenz´s- I have commented about the same as you Ian. I feel that the words of the mom talking about suicide-murder are a sample of her state of desperation, the lack of support for me is the root of it (of all the aspects needed, medical, educational, psychological, of any nature for the child and for the parents).Learning about how to help is one of the most important things for me, but can be very difficult for parents facing extreme challenges with their autistic children.For me it is not a question of right or wrong, it presents the state of the things, the experience of many families- and this does not imply that is right or that I agree with BUT my personal situation is different and we are receiving the help I consider we need under our responsible and the most possible informed decisions.
María Luján