My wife and I and my outlaws (they’re great, but this is still my handle for them – my only ‘in-laws’ joke) took the Bear to Black Creek Pioneer Village on Sunday for an outing. We all had a good time, and the Bear, true to form, wandered everywhere to see everything, but didn’t seem to be focusing much on anything in particular. We stopped in a yard outside one of the houses and hung out under the shade of the trees, and the outlaws played with the Bear.
“She might not look like she’s paying attention, but she’s taking everything in.” said my father-in-law. “She understands a lot more than we know.” My jaw dropped. Then I clued in, and that reminded me to mention to my mother-in-law that we now had a copy of the Time magazine with the cover story on Autism (May 15th, 2006 issue, written by Claudia Wallis). “Oh, we forgot to bring it”, she said, but it didn’t matter. We had all missed that edition on the newstand. Relatives in Michigan had a copy and sent it to my outlaws for them and then us to read. “Did you read it?” I asked. Both answered yes and that they had found it very interesting, and helpful in understanding autism. They’ve always been good with the Bear, but their comments on Sunday showed that they ‘got it’, at least as much as one could from the Time write-up. They knew that what they could see was not indicative of what the Bear was thinking or understanding or capable of. It was one thing for us to say it, but now it was in print too, so it must be true.
The outlaws then proved that they didn’t ‘get’ everything when they asked about the Bear’s school. They forgot that she goes to IBI five mornings a week, and were still under the impression that the government must be paying for her IBI since the government had ‘approved’ her for funding. We obviously must be doing something wrong (because there surely couldn’t be a waiting list for something so important?). Why didn’t we just demand that they pay? But that’s another story.
---
I found the Time write-up to be surprisingly good. Among other points, it talked about previously unrecognized (by non-ASD people) capabilities of those with ASD, autistic brain structure (raising the surprisingly sophisticated question of how much is the cause vs. the result of autism), autism subtypes, the view that ASD may be a combination of genetic vulnerabilities and environmental triggers, and the potential of the immune system to play a role. It also included an article on ABA and Floortime/DIR (developmental, individual-difference, relationship based) teaching, showing that teaching is not just possible, but very achievable. The write-up also mentioned some of the negatives, but did not dwell on them to the exclusion of the positives or of progress and hope. It was surprisingly balanced in its overall approach.
My favorite part was the following bullet-point under “Among the surprises:”
”Many classic symptoms of autism – spinning, head banging, endlessly repeating phrases – appear to be coping mechanisms rather than hard-wired behavior. Other classic symptoms – a lack of emotion, an inability to love – can now largely be dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.”
This one quote highlights the most important take-away from the Time articles that I want everyone who meets the Bear to know. If they remember nothing else, I want them to remember this. For this alone I am grateful to Time and the author.
Contrast this with “Autism Every Day”.
I was quite taken aback by the video itself. I feel sympathy for the families involved, but I also have some major issues. To me this was a ‘train wreck’ video, and while autism is obviously difficult, I don’t feel that families touched by autism are well served by disaster movies. A more honest video would have showed the difficulties, but also the good times, and that it is possible to cope, learn, and improve the quality of life of our children, and for that matter for ourselves as parents, siblings, etc. The video asked for understanding, but it appeared to me to be understanding for the parents in having to deal with their children, rather than understanding for both children and parents.
I quite like the idea of a video to explain our lives to others. But I'd prefer that it didn't make my child (by association) look like a ‘nightmare’ inflicted on us (and potentially on others when they come in contact with her). As a parent, autism is hard and painful at times to deal with, but there is also a joy that we can feel from our children, and one that our children can feel, even if we cannot always see it - and I think that much of the time I can see it, written on my daughter’s face. I don't want people to shy away from the Bear, to be afraid of the disruption that they fear she may cause, or to pity her, but rather, I want them to understand her and accept her.
Asking for acceptance does not mean that I'm not going to work like hell to fix her SI, immune, GI, etc. issues. I have no problem with autistic thought per se, but with autistic 'issues' - it is these that I'm working to help her overcome, and I believe there is a link between her medical symptoms and these ‘issues’. Asking for acceptance also does not mean that I won’t try through IBI or other teaching methods to teach or enable her to learn the skills she needs to make her way in the world. Instead, acceptance means recognizing her as a human being worthy of the same respect and rights as anyone else. Implying that she is a nightmare to deal with is not only untrue, but does nothing to further this goal.
I'm also angry at some of the comments of the parents. I believe that my daughter is capable of understanding far more than I can see (and I often get confirmation of this, at the most surprising times). I would never say in front of my child (or behind her back, for that matter) that I was contemplating driving off a bridge with her in the car, or that she will never get married, or that hopefully medical science will find a cure before her sister has children, the implication being so that the sister does not have to deal with a child like her. What about medical science ameliorating her autistic daughter's difficulties, or enabling her to lead a rich life through learning and inclusion too? More than one of the parents sounded like they viewed their kids as 'write-offs', and did so right in front of them. That made me cringe.
A major point left out of both the Time write-up and the video is that learning and assistance for parents is definitely needed and in short supply. This is needed so that parents can better understand autism (not that I do yet, either), how to help their children, and what their children are - and can become capable of - achieving. The lack of understanding of the powers that be (especially including front line and even some 'expert' medical people, but also government and some in the various support services) is short-changing everyone involved. Both missed this point.
The words and actions of the parents may be related in part to this lack of knowledge. Given that my daughter is not yet three, I'm also very conscious of 'there but for the grace of God go I', so I don't want to judge too harshly, or publicly condemn them (although I guess I just did). My daughter is 'severe' (or was last summer), but I have no idea what she will be like when she is five, 10, 15, 20, etc. I think she is becoming significantly more capable and will surprise us all. But even if she doesn't lose the 'severe' diagnosis, I hope that I will never look at her as I perceived that the parents in the video looked at their children. To me, that would be a tragedy.
Overall, the Time article is one that I wish that everyone coming in contact with the Bear could read. I hope that it helps them gain a better understanding of what autism is, accept the Bear’s strengths and challenges for what they are, and see her as filled with potential.
In contrast, I hope that no one who meets the Bear has seen ‘Autism Every Day’. I hope that any who have can recognize that the video is not a true reflection of life with the Bear, and I definitely do not want them to judge her based on what they’ve seen. Getting people to understand and accept the Bear will be hard enough, without her having to deal with the ‘own-goal’ called Autism Every Day. The Bear is not a nightmare to be endured. She is my daughter, she is a great kid, recognized as such by all who meet her, and she deserves better than the video. The Time article is a good place to start.
---
On a bright note, the Bear ate with her hands for the first time today. Previously, all food came from a spoon or a sippy-cup. We recently got her to allow us to put banana from our hands into her mouth. But today, for the first time, she ate strawberries with her own hands. Small steps, but a big leap in independence. Go Bear!
Tuesday, May 30, 2006
Thursday, May 25, 2006
The Murder of Katherine McCarron
Like many in the community of people linked by autism, I am deeply saddened and troubled by the murder of Katherine ‘Katie’ McCarron. Some have suggested as a mitigating factor the view that autism can be difficult to deal with (using the “Autism Every Day” video as an example of the difficulties of being an autistic parent), some have blamed the video for its one-sided portrayal of autism as a 'nightmare' to be endured, some have blamed bio-meds, etc. Personally, I’m just going to stick to the basics.
Children are not objects, possessions, or property. They are fellow human beings, temporarily entrusted to us for care, nurturing, protection, support, and growth, and especially for love.
Their life was ours to give, but it is not ours to take away. No parent has the right to murder their child. Period.
I’m not going to say that this murder was worse because Katie was autistic. The murder of any child, especially by a parent, is equally horrific. And to be clear, we do not yet even know the mother’s motives, but are only surmising that autism may be part of this, because Katie was autistic and her parents may have been following an 'amelioration' approach. But what does makes this case worse is that some – possibly including the mother - may believe that the fact that Katie was autistic somehow partially justifies the act, lessens the severity of the crime, or is somehow a mitigating or explanatory factor.
There are no gradations of humanity, no ‘part’ humans, no ‘people, but’. Autistics may face communications and other issues, but these issues in no way render someone any less human and deserving of life, security, and respect. Whatever autism ‘is’ to anyone – a diversity to be celebrated, something to be cured, something to be understood, something to be lived with, something to ‘be’ – it is not is an excuse or justification for murder.
Children are not objects, possessions, or property. They are fellow human beings, temporarily entrusted to us for care, nurturing, protection, support, and growth, and especially for love.
Their life was ours to give, but it is not ours to take away. No parent has the right to murder their child. Period.
I’m not going to say that this murder was worse because Katie was autistic. The murder of any child, especially by a parent, is equally horrific. And to be clear, we do not yet even know the mother’s motives, but are only surmising that autism may be part of this, because Katie was autistic and her parents may have been following an 'amelioration' approach. But what does makes this case worse is that some – possibly including the mother - may believe that the fact that Katie was autistic somehow partially justifies the act, lessens the severity of the crime, or is somehow a mitigating or explanatory factor.
There are no gradations of humanity, no ‘part’ humans, no ‘people, but’. Autistics may face communications and other issues, but these issues in no way render someone any less human and deserving of life, security, and respect. Whatever autism ‘is’ to anyone – a diversity to be celebrated, something to be cured, something to be understood, something to be lived with, something to ‘be’ – it is not is an excuse or justification for murder.
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.
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.
Friday, May 05, 2006
In Praise of PECS
From our (parental) perspective, one of the greatest challenges posed by the Bear’s autism is the resulting communications difficulties, specifically, our inability to always understand what she wants us to know and understand. The Bear (again, our daughter’s nom de net) is a very happy and good natured child (boy did we luck out – my parents want to know how this trait skipped a generation), and we have yet to experience a tantrum or meltdown of any sort (obviously we do get tears on occasion, but we’d be worried if we didn’t). I recognize that meltdowns can result from sensory overload, which doesn’t seem to be an issue at this point (touch wood – hand to head), but rumor has it that they can also result from the sheer frustration at the inability to make oneself understood. One of our goals as parents is to enable the Bear to communicate to the point that this level of frustration never arises.
Given that she does not speak (although she produces a host of sounds, some of them incredibly cute), and currently does not read (to the best of our knowledge, anyway) or write, this is a challenge. She is getting quite good at gesturing, and is quite capable of taking my hand and leading me to where she wants me to go, directing my hand to the object she seeks, or asking to be picked up, etc. But gesturing is not always an option, and something more is required.
We – or more accurately, our IBI providers - first introduced PECS, or Picture Exchange Communication System, to help fill the gap. PECS is quite literally what the name suggests. The student can exchange one or more pictures with another person to communicate a request, a thought, or anything that can reasonably be displayed or symbolized on a picture card. The IBI providers said that “we know that she has preferences, so we started using pictures as a way to get her to tell us what they are.” She caught on quickly, and we all decided to adopt this as a means of communications everywhere.
The PECS methodology has seven phases:
1 – teaching the student to initiate communications by exchanging a single picture for a highly desired item
2 – teaching the student to be a persistent communicator, to actively seek out their picture and travel to someone to make a request
3 – learning to discriminate between pictures and selecting the picture that represents the item they want
4 – learning the use of sentence structure to make a request in the form of “I want ____”
5 –responding to the question “What do you want?”
6 – learning to comment about things in their environment, both spontaneously and in response to questions
7 – vocabulary expansion, using attributes such as size, shape, and color in requests.
We’re not rigidly following the methodology, but are using it as a guide. The Bear is currently finishing phase 2. We’ve started PECS at home, with assistance from our SLP and a PECS specialist from the regional Special Needs organization, and have been very successful so far. We were quite surprised at how good the Bear already was at using it.
To assess her level, the SLP, PECS specialist and I sat her in front of a Teletubbies DVD (the Bear obviously gets her taste in videos from her mother), and then stopped the show. She looked around, and then gestured to me, and we started the video again. Then we put a card beside her and stopped the show. When she reached to gesture to me, the PECS specialist guided her to pick up the picture and hand it to me. No issues. Very quickly though, she showed what she could do. Working with the PECS specialist, within a few more trials the Bear showed that without any hesitation she could retrieve a binder out of arms reach (she had never used a binder before), tear the PECS card off of the velcro, walk across the room to the PECS specialist - who was deliberately ignoring her – and get her attention, grab the specialist’s hand and flip it over, and put the PECS card in her palm to request the show. She could do this consistently. We were quite surprised at her ability and her persistence, as we were deliberately being as uncommunicative as possible see how she would react. As the specialist said, you can’t teach persistence. The child has to want top do it. And the Bear clearly wanted to communicate.
To finish phase 2 we need the Bear to demonstrate that she can hand the card to the correct person, i.e. the one to whom she should be making the request at that time. This seems to be no issue, so it is on to phase 3. At this point we need to teach her to select the right picture to represent what she wants to communicate. Techniques include selecting from a choice of the correct card versus a blank card, and then choosing between two (and then more) non-blank cards. Given that she is currently scrutinizing the cards we think that she will grasp this reasonably quickly.
One of the things I like about PECS is that it follows the Bear’s lead. It is up to her to initiate the interaction on an ongoing basis. It is her way of communicating with us. At IBI they currently use it for her to request her ‘milk’, snack, books, access to the play room, etc. At home we will be using it pretty much for everything she might want to communicate with us. The beauty of it is once she has grasped the concept of discriminating between pictures, we can use pictures of pretty much anything. By putting words underneath the pictures there is evidence that PECS can help children learn how to read. By fading from photographs to symbols (we currently use a mix of both) we can introduce more symbolic concepts rather than just tangible items. And there is some evidence that the use of PECS helps children to learn to talk. While this last point is a goal, regardless of whether she learns to speak we see PECS as giving her a ‘voice’ sooner, rather than later, until she can learn to read and write.
So far, our experience has been entirely positive. One day in the not too distant future the Bear will be able to use PECS to give us her thoughts, but given the speed at which she has taken to it, I’m guessing that she will endorse PECS too.
Given that she does not speak (although she produces a host of sounds, some of them incredibly cute), and currently does not read (to the best of our knowledge, anyway) or write, this is a challenge. She is getting quite good at gesturing, and is quite capable of taking my hand and leading me to where she wants me to go, directing my hand to the object she seeks, or asking to be picked up, etc. But gesturing is not always an option, and something more is required.
We – or more accurately, our IBI providers - first introduced PECS, or Picture Exchange Communication System, to help fill the gap. PECS is quite literally what the name suggests. The student can exchange one or more pictures with another person to communicate a request, a thought, or anything that can reasonably be displayed or symbolized on a picture card. The IBI providers said that “we know that she has preferences, so we started using pictures as a way to get her to tell us what they are.” She caught on quickly, and we all decided to adopt this as a means of communications everywhere.
The PECS methodology has seven phases:
1 – teaching the student to initiate communications by exchanging a single picture for a highly desired item
2 – teaching the student to be a persistent communicator, to actively seek out their picture and travel to someone to make a request
3 – learning to discriminate between pictures and selecting the picture that represents the item they want
4 – learning the use of sentence structure to make a request in the form of “I want ____”
5 –responding to the question “What do you want?”
6 – learning to comment about things in their environment, both spontaneously and in response to questions
7 – vocabulary expansion, using attributes such as size, shape, and color in requests.
We’re not rigidly following the methodology, but are using it as a guide. The Bear is currently finishing phase 2. We’ve started PECS at home, with assistance from our SLP and a PECS specialist from the regional Special Needs organization, and have been very successful so far. We were quite surprised at how good the Bear already was at using it.
To assess her level, the SLP, PECS specialist and I sat her in front of a Teletubbies DVD (the Bear obviously gets her taste in videos from her mother), and then stopped the show. She looked around, and then gestured to me, and we started the video again. Then we put a card beside her and stopped the show. When she reached to gesture to me, the PECS specialist guided her to pick up the picture and hand it to me. No issues. Very quickly though, she showed what she could do. Working with the PECS specialist, within a few more trials the Bear showed that without any hesitation she could retrieve a binder out of arms reach (she had never used a binder before), tear the PECS card off of the velcro, walk across the room to the PECS specialist - who was deliberately ignoring her – and get her attention, grab the specialist’s hand and flip it over, and put the PECS card in her palm to request the show. She could do this consistently. We were quite surprised at her ability and her persistence, as we were deliberately being as uncommunicative as possible see how she would react. As the specialist said, you can’t teach persistence. The child has to want top do it. And the Bear clearly wanted to communicate.
To finish phase 2 we need the Bear to demonstrate that she can hand the card to the correct person, i.e. the one to whom she should be making the request at that time. This seems to be no issue, so it is on to phase 3. At this point we need to teach her to select the right picture to represent what she wants to communicate. Techniques include selecting from a choice of the correct card versus a blank card, and then choosing between two (and then more) non-blank cards. Given that she is currently scrutinizing the cards we think that she will grasp this reasonably quickly.
One of the things I like about PECS is that it follows the Bear’s lead. It is up to her to initiate the interaction on an ongoing basis. It is her way of communicating with us. At IBI they currently use it for her to request her ‘milk’, snack, books, access to the play room, etc. At home we will be using it pretty much for everything she might want to communicate with us. The beauty of it is once she has grasped the concept of discriminating between pictures, we can use pictures of pretty much anything. By putting words underneath the pictures there is evidence that PECS can help children learn how to read. By fading from photographs to symbols (we currently use a mix of both) we can introduce more symbolic concepts rather than just tangible items. And there is some evidence that the use of PECS helps children to learn to talk. While this last point is a goal, regardless of whether she learns to speak we see PECS as giving her a ‘voice’ sooner, rather than later, until she can learn to read and write.
So far, our experience has been entirely positive. One day in the not too distant future the Bear will be able to use PECS to give us her thoughts, but given the speed at which she has taken to it, I’m guessing that she will endorse PECS too.
Monday, May 01, 2006
Peek-A-Boo With The Bear
Just a quick story about The Bear (my 2 year old daughter's nom de net).
Our house is open concept, with the kitchen beside the living room, separated by four big posts. Two couches face one another across the living room and are perpendicular to the kitchen. I was in the kitchen and the Bear was sitting on one of the couches, minding her own business, when I thought I'd try and engage her in a game of peek-a-boo.
"Peek-a-boo!" She looks round, and when she sees me I duck behind the kitchen island.
"Peek-a-boo!" She looks at me and smiles. I hide and pause, trying to generate a sense of anticipation.
"Peek-a-boo!" She smiles and begins to bounce up and down on the couch. I duck again, and sneak over behind the end post separating the two rooms.
"Peek-a-boo!" She's now fully engaged in the game, bouncing up and down and clearly enjoying herself. I sneak over and crouch beside the other couch, which doesn't line up with her couch, so I can hide at the side.
"Peek-a-boo!" She sees me at the side of the couch. I hide and pause again.
"Peek-a-... what?" Where'd she go? I look up, and the Bear had crept quietly over and is standing on my couch, hands on the arm rest, leaning over, looking down on me and giggling.
Dad was outsmarted by the Bear.
Our house is open concept, with the kitchen beside the living room, separated by four big posts. Two couches face one another across the living room and are perpendicular to the kitchen. I was in the kitchen and the Bear was sitting on one of the couches, minding her own business, when I thought I'd try and engage her in a game of peek-a-boo.
"Peek-a-boo!" She looks round, and when she sees me I duck behind the kitchen island.
"Peek-a-boo!" She looks at me and smiles. I hide and pause, trying to generate a sense of anticipation.
"Peek-a-boo!" She smiles and begins to bounce up and down on the couch. I duck again, and sneak over behind the end post separating the two rooms.
"Peek-a-boo!" She's now fully engaged in the game, bouncing up and down and clearly enjoying herself. I sneak over and crouch beside the other couch, which doesn't line up with her couch, so I can hide at the side.
"Peek-a-boo!" She sees me at the side of the couch. I hide and pause again.
"Peek-a-... what?" Where'd she go? I look up, and the Bear had crept quietly over and is standing on my couch, hands on the arm rest, leaning over, looking down on me and giggling.
Dad was outsmarted by the Bear.
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