I almost missed it - ten years ago today...
Ten years ago today, I embarked upon this strange and wonderful journey. It was the day I started my training in Lovaas-style Applied Behaviour Analysis (ABA). I was one member of a five-person team of therapists who would be coming in to the family's home to work with their three-year old son. He would be scheduled for over 40 hours per week, so that if anyone missed one of their two-hour shifts, he would still be likely to get his full 40 hours in. That 40+ hours was scheduled across all seven days of the week, though there were only two sessions on Sunday - plus our weekly team meetings. My starting wage was only $7.50 per hour, and I was working, on average, 10-12 hours per week, not counting the meetings.
Our consultant came to Thunder Bay from the Wisconsin Early Autism Project (WEAP). She conducted a three-day start-up workshop that started on August 21, 1999; she returned every three or four months after that, to conduct two-day follow-up workshops at which she advanced the curriculum and taught new techniques to the therapists as necessary. The child's parents paid for her transportation, her hotel, and a rental car, plus (I am sure) her fee.
The child was incredibly cute, the youngest of three children. His two older sisters were sweet and wanted to be involved in everything, but of course that's not always possible. The boy had blue eyes and light brown hair cut in a bit of a mullet (primarily because he refused to go near a hair salon). He was still in diapers. He didn't speak.
We had some teaching from the consultant about what autism is, what ABA is, and what we would be doing. Then we played with the child one-on-one, trying to develop a bit of a rapport with him while the others looked on.
The consultant taught us the techniques. Setting out the materials, what words to say, how to say them, how to prompt, and how to fade those prompts. How to praise, what to use as reinforcers (e.g., gummy bears, sparkly toys), and how to let him know he got the wrong answer. How to take data.
Then she taught us the "programs" that we would begin with - the same ones that are often the beginning of any ABA program (my memory may be faulty; I don't recall which we started that weekend):
Receptive Labels, in which the therapist sets out an array of items and requests one of them. The student is to pick up the correct one and place it in the therapist's waiting hand. This begins with 3-D objects and moves to pictures.
Receptive Imitation, in which the therapist performs an action after saying, "Do this." The student is to imitate the therapist's action. This begins with objects (e.g., hitting a peg with a hammer, pushing a car off the table) and moves to gross motor actions (e.g., turning around, clapping).
Matching, in which the therapist sets out an array of items and gives the student the match for one of them. The student is to place his item next to the matching one. This begins with 3-D objects and moves to pictures.
Receptive Commands, in which the therapist tells the student to perform an action. The student is to perform the action. This progresses from Receptive Imitation; the student is taught actions in Receptive Commands only once they are mastered in Receptive Imitation.
Puzzles, in which the therapist removes the pieces from a puzzle and sets it in front of the student. The student is to put the puzzle back together. This begins with simple shape puzzles with peg handles and pictures below to show where they're meant to go and progresses to full jigsaw puzzles.
Expressive Labels, in which the therapist holds up an item and asks its name. The student is to label the item. This progresses from Receptive Labels; the student is taught to say labels only once they are mastered in Receptive Labels.
Vocal Imitation, in which the therapist makes a sound after saying, "Do this." The student is to make the same sound. This begins with simple sounds and progresses to various combinations, until the student is imitating full words.
There are many other "programs" used in ABA programs, like Toy Play, Spelling, and Fine Motor. I have worked in a lot of ABA programs over the years, and I've worked through most of these programs.
Ten years.
That's a long time. I've had the privilege of working with many wonderful children over the years, and many amazing families to boot. The lengths to which these children's parents are willing to go, to provide their children with what they believe is the best possible educational option, is phenomenal.
And while I do not want to go back to the world of teaching autistic individuals to pretend they are normal, I do recognize the value of that initial training I received, ten years ago this weekend. It taught me how to teach. It taught me how to manage behaviour. A few years later, I was getting compliments from my fellow Sunday School teachers for how I managed my elementary students and dealt with the discipline - the other teachers were older than I, and parents. Just last year, I was able to manage a large group of writers as I headed up NaNoWriMo in Calgary.
My time as an ABA therapist has certainly come to a (welcome) end, but thanks to it, I learned how to give myself structure. I learned how to break things down into steps so that they are more manageable. I learned that it's okay to get help if you've never done something before. I learned that there is a progression to learning, and I learned how one thing builds upon the last until you have a strong foundation... and then a strong building.
Edit:
In a comment elsewhere, I was asked what I think should be done with autistic children - leave them unable to communicate with friends, parents, or siblings?
Of course not! And any regular reader of this rather irregular blog should know that by now. :) Here is what I said in response:
Teach them. But not to pretend they're normal. Autistic people need to learn to deal with the world, not pretend they have no differences. In order of importance:
1. Communication (Effective, functional)
2. Sensory Processing Differences (Arousing, coping, calming)
3. Physical Health (Medical, dental, psychological)
4. Life Skills (Hygiene, cooking, cleaning, money)
5. Academics (Reading, writing, arithmetic)
6. Behaviour Management (May not be necessary, if the rest is done well)
ABA is about teaching autistic children to pretend they're normal. It's putting sub-par glossy paint over wood that really just needs a sanding and a coat of varnish. Eventually it bubbles and peels or chips away, and the end result is uglier than it was to start with.
(Also: why do so many people think that the alternative to teaching autistic children to pretend to be normal, or the alternative to ABA, is to not teach them anything at all?)
19 comments:
I never thought of ABA as teaching kids to fake normalcy. Isn't it a matter of making them functional?
You see the value in improving skills and behavior. Why can't you see the value in improving the underlying medical condition?
ABA's stated goal is "indistinguishability from peers" - i.e., you can't tell the person is autistic if you do the ABA right. That's faking normalcy.
ABA causes undue stress for children who are already under a horrific amount of stress.
The "underlying medical condition" of autism is not what you think it is, John. Recent research has shown that the "gut problems" are caused by a particular genome acting up (and I suspect that this same genome is related to all manner of digestive issues, such as celiac disease and IBS), and that most autistic individuals show an inflammation of white matter in their brains - always in a different location, which is why symptoms vary so widely. I need to read the article about this (in Discover magazine's Summer Special issue on Health) more closely, but I don't think they know why the white matter is inflamed; once they do, it may be possible to reduce that swelling. Alleviating these two problems is highly likely to make autistic individuals' life much less stressful and much easier all around, and I doubt it will require risking their lives in order to do so.
In the meantime, there is much more value in teaching autistic individuals how to handle the world the way they are than there is in teaching them that the way they are is bad or wrong, and teaching them that they need to pretend they aren't autistic in order to get by in life.
All that causes is depression, nervous breakdowns, and, all too often, suicide.
Jannalou,
I think you might be right about suicide and breakdowns in people with Asperger's due to ABA stress but I doubt that is the case for people with autism.
Since I watched the gut problem of a five year long battle with constipation disappear after a few rounds of chelation that has now been gone for five years, that's proof that this junk science about a genome acting up is not true for everyone, if for anyone.
People with Asperger's might be able to pretend they're normal but people with autism can't do that.
You do a great disservice to autistic children by your mischaracterization of ABA. I only hope that parents who read your views also read other sources and get a better informed picture.
Amongst other behaviors modified by ABA are dangerous and life threatening behaviors. It is used by a tertiary care pediatric facility here in NB to help autistic children who present with such dangerous behaviors as biting, head banging and self starvation.
My son did not receive the 40 hours of Lovaas DTT between the ages of 2-5. The ABA he has received has been invaluable in teaching him academic and life skills and reducing self injurious behaviors.
Parents in NB had to first advocate to get the proper training programs in place, which we did, and which is still in place at UNB training preschool autism support workers and teacher assistants. The program has been reviewed very favorably by Dr. Eric Larsson and amongst guest speakers has included David Celeberti on more than one instance.
I am glad that my son received, and continues to receive, ABA intervention from properly trained people who actually understand the benefits of ABA and believe in it.
I would not want him to receive ABA intervention from someone who does not actually believe it works and does not understand it properly.
John, the whole point of ABA for autistic kids is to give them the appearance of being non-autistic. The fact that it doesn't actually do that and, instead, causes an awful lot of stress on the individual is handily ignored by most advocates of the therapy. I'm glad your son's gut problems are better, though I don't know that the chelation actually did what you think it did in that situation. Regardless, the genome research needs more study as well, so it's not a for sure yet any more than the white matter one is.
Harold, my thought (and experience) is that if communication difficulties and sensory processing differences are handled appropriately, many of those damaging behaviours you mention are eliminated because the problems causing them have been eliminated. I am not against behaviour modification; that is, after all, what both good parenting and good teaching are. I also wonder if you read my entire post here, as I am merely objectively describing my experiences ten years ago and even go so far as to state that I am glad I started in the field as an ABA therapist. I may have ethical problems with the way ABA is used, but I do think there are some valuable lessons to be learned from the philosophy and techniques of this type of behaviourism.
Your son may not have had 40 hours per week of ABA when he was that young, but most of the children I worked with in that age group did. The youngest was two years old.
I have stated that I believe in teaching autistic children the skills they require in order to get through life. This includes academics, life skills, and communication. Obviously you have chosen to use ABA to do that. I am not questioning your right to choose this avenue for your child; I am merely stating my belief that there are better methods in existence.
And that is my right.
Jannalou,
From where I sit, even though I don't use ABA, it has nothing to do with appearances. It's all about helping the most severely disabled gain improvement in their condition.
When you have children that are severely disabled, the last thing you worry about are appearances.
John,
even though I don't use ABA, it has nothing to do with appearances
It has everything to do with appearances. Autism is diagnosed through observation of behaviour. ABA modifies that behaviour so that there are fewer autistic behaviours in evidence. That is appearances, plain and simple. ABA doesn't actually do anything to help alleviate the difficulties that underlie the autistic behaviours.
helping the most severely disabled gain improvement in their condition
In their outward condition, yes. But it takes a lot of effort on the part of the individual to maintain that appearance, and eventually the conditioning will break down and there will be "regression."
When you have children that are severely disabled, the last thing you worry about are appearances.
Traditionally, appearances are all society worries about when it comes to individuals with severe disabilities. That's why disabled children were, until relatively recently, sent away to institutions. Children with severe disabilities don't always grow up to be adults with severe disabilities. The degree to which a child is affected by autism at the age of three is not a predictor of the degree to which that child will be affected at the age of ten, 15, 25, or even 50.
All people learn and grow and develop new skills over the years; those with developmental disorders (which is what autism is) simply take longer to do so than their non-autistic/non-disabled peers.
Jannalou,
I partially agree with you about ABA just putting a false front on a child's behavior when the underlying condition is not addressed.
The 20 year olds I worked with in an asylum who were no different than 2 year olds though, confirm the fact that the most severe cases of autism will mostly never improve. That's what I had, an eight year old who was just like a baby...until he began to grow after chelation.
The other thing about ABA that makes me favor it is that if you can gain enough improvement in behavior to make a kid manageable enough to stay home rather then being forced to asylumize him when the behavior is just too difficult to handle, I think the kid would be happier at home.
I don't think anyone asylumizes a kid by choice; I think it's mostly out of necessity with the exception of messed up parents.
John, I think that people live up to our expectations; if we expect nothing, we will get nothing. I am sure that those 20yo individuals you worked with would have been able to achieve a lot if they had been given access to and training in adequate communication methods, help dealing with sensory processing, and education in various other life skills. Institutionalizing people used to be the first step upon diagnosis; now it's a last resort, and it can be avoided, in most (if not all) cases if the right approach is taken.
Jannalou,
I agree. If you chelate them, they have a chance.
John,
Well, we'll have to agree to disagree on just what the right approach actually is, but at least we agree that autistic adults don't need to stagnate. :)
Jannalou,
Since you are the most intelligent of the Neurodiverse and, I believe, the only one who appears to also be honest, I have a question for you.
What will you think after all sorts of children are given the upcoming flu shots if their autism becomes worse from having three doses of thimerosal shot into them? Did you hear that the CDC announced that they want to put kids with neurological conditions first in line to receive these flu shots?
I wouldn't come here to say " I told you so" if that happens since I do respect you. For the sake of the children, do you think it would be a good idea to take a position against shooting three more doses of mercury into them for this swine flu? After all, if they used single dose vials, the mercury wouldn't even be needed.
Okay, here's the thing: I don't think the flu vaccine is actually necessary, anyway.
But at the same time, you are neglecting to attend to the fact that many autistic children never got any thimerosal in their vaccines. Yes, it's in the flu shot, but it's been removed from pretty well everything else. (I'm not about to debate whether or not doctors kept using thimerosal-ridden vaccines after it was supposed to be stopped, because I doubt it was as widespread a practice as some seem to think. I just don't think people are that dishonest, and there's no proof either way anyhow.)
Now, I may be misremembering, but I think that most of the people who are dying of the H1N1 right now are young adults. The way it was explained to me is that with most flus (which are, by the way, all cross-species between pigs and humans) it is infants and the elderly who are most at risk because their immune systems are not as strong as those of us in "the prime of life." This one is more likely to cause problems with young healthy people because it does something wonky to the immune system. Vaccinating for it doesn't help, because if it's already in the system then it's got a foothold and can wreak even more havoc than usual. And I probably just explained that all wrong, but it's how I remember it.
Regardless, I personally have never gotten a flu vaccine, the last time I had the flu was last February, and before that I hadn't had anything but a cold in probably twenty-some years. So I won't be getting the vaccine now, either, and I probably wouldn't get my own children vaccinated against the flu if I had any.
But, of course, while I do think that vaccines are important and necessary, I do advocate caution when vaccinating. Don't do multiple-dose vaccines. If you're breast-feeding, your infant probably doesn't actually require vaccines until about six months of age. And get the titers checked prior to any vaccine, to ensure that you aren't giving a vaccination for something against which the child already has an immunity. There are also some illnesses for which we vaccinate that do not require vaccinations because the consequences are negligible. Of primary importance, to my mind, are things like polio, rubella, mumps, and measles. There are others that I can't think of right now. The rest need to be evaluated carefully - possible reactions, weigh pros and cons of actually getting the disease, etc. - but many are important.
The flu, though? Not so much.
You're a rare combination of beauty and brains, Jannalou. It's too bad the other members of the Autism Hub can't learn from you.
Ah, I don't know about that, but I appreciate the sentiment, at least. :)
I taught preschool children with autism using ABA/Verbal Behavior for several years. You may have a limited view of ABA if your only experience is with Lovaas. In my classroom, the 2 most important things we did were to teach our students to socialize and to communicate.
In order to teach children to communicate, we discerned what their favorite toys, foods, and activities were. Using a technique called "manding", we taught them to ask for those items with sign or spoken language. This replaced the need to yell, cry, or hit to have their needs met. This one thing drastically improved the quality of life for all the students, because they discovered they could use words to communicate and be heard. We didn't teach the children to communicate instead of tantrum because we didn't like the "appearance" of tantruming. We did it because every individual deserves to have a voice in this world.
We used a technique called "pairing with reinforcement" to teach the children to socialize. We began by discerning what activities each child enjoyed and giving the child that toy or activity and joining in with it to try to enhance the child's enjoyment. For example, if a child likes a toy garage, I give him the garage and cars to play with. Then I try to capture his interest and attention by playing with him in an animated way. Children learn from this that they can share an interest with another person, and that that other person can enhance the experience. We don't teach children to play with others because we don't like the "appearance" of them playing alone or stimming. Again, this is a quality of life issue. Our lives are enhanced by interacting positively with others.
You claim that ABA causes stress for students. The 2 techniques I just described greatly reduced the stress of all of my students.
What you forget about behavior analysis is that in order to change a behavior, we must first discover the child’s underlying reason for the behavior. If a child regularly bangs his head on the wall, we must determine why. If he does it to avoid an activity, we must ensure that he participates in that activity. If he does it because he doesn’t know how to ask for attention or something he wants, then we must teach him to ask. If he does it for the sensory input, we must teach him a healthier way to meet that need. If it were all about appearances, then we would just punish the behavior until it stops. That being said, sometimes appearances are important. I hope you don’t suggest that by replacing autistic behaviors with socially acceptable ones, that we are robbing these people of their individuality or their uniqueness. A person with autism is not defined by how he stims. If a child with autism is able to learn in a general ed classroom, why should he be kept out of that environment because his stims would distract the rest of the class? A behavioral therapist would determine the reason(s) for the stims and create a plan to replace them with appropriate classroom behavior or adjust the environment to eliminate the need to stim. This isn’t unique to kids with autism. All children need to be socially appropriate in class.
Please keep in mind that when you talk about ABA, you are talking about a variety of programs and techniques, some of which you may not have any experience with. ABA has done wonders for countless children, and Verbal Behavior (under the umbrella of ABA) is a comprehensive approach which instructs teachers to teach children language, social, and learning skills while treating them with empathy and understanding. By bad-mouthing ABA, which is still known as the “gold standard” in autism treatment, you may be discouraging parents from trying a therapy that would greatly enhance their children’s lives.
Thanks for your detailed comment, Jen.
I have done VBA, as well. It was only for a few months, but that was long enough for me. As I learned techniques, I used them with children I was working with - everything from manding to errorless learning. The children I was working with at the time definitely benefitted from the addition of these techniques to their programs.
Teaching communication is one of the first things that should be done, I agree. I don't agree that ABA is necessary in order to do so, though most non-ABA methods I've seen are still very behavioural in nature.
"Pairing with reinforcement" is good teaching. It's what you do in play therapy. If I'm not fun for the child to be around, I'm not doing my job. If I can't teach him using fun activities, I'm not doing my job.
The problem I have seen with many (not all) ABA programs is that the search for the reason why an individual is doing something often stops too soon. If the answer isn't immediately apparent, the consultant often decides that we just have to "train it out" or something equally disrespectful. If a child is doing something to avoid an activity, you need to find out why he's avoiding the activity, not force him to engage regardless. He's telling you he doesn't like it. Why doesn't he like it?
Replacing stims is a laudable goal; I don't think that is bad. But I do think it is vital to ensure that you know the true purpose for a stim before you start trying to replace it with something else.
Simple story, from my own experience: One child I worked with for two years had a stim wherein he bit the back of his hand quite often. I tracked that behaviour for two weeks, using the usual ABC method, and discovered that he was biting the back of his hand when he was being asked to do something difficult and when he was doing something he enjoyed immensely. I extrapolated from that information that the biting was a behavioural reaction to intense emotion - whether positive or negative in nature. After consultation with his parent, it was decided that we would try to lessen frustration and difficult tasks (not eliminate them entirely) but not try to stop or change the behaviour.
There are many good things about ABA. Its goal of "indistinguishability from peers" is not one of them.
As I said in my post, I learned a lot through my time as an ABA therapist. I learned to manage behaviours. I learned to teach. I learned how to handle situations in which the other person was out of control. I learned many other things about how to handle my own life, as well. These are all good things, and I use them all the time and will continue to use them throughout my life.
what are non-ABA methods of teaching communication? Whether you call it ABA or not most methods of teaching are through some sort of ABA. I'm curious to read what you classify as a non-ABA method - sorry if you've already mentioned it - I wish I did, but I don't have the time to read through your entire blog
As I said, most methods employed by speech therapists (that I've seen) are behavioural in nature. However, they do not necessarily follow the type of strict protocols you find in ABA programs. In addition to this, it is important to recognize that, for the most part, when we're talking about autism treatment methods, the term "ABA" has more to do with Lovaas-type instruction and Verbal Behaviour methods - in other words, most people who use the term "ABA" in regards to autism are speaking of something specific, rather than the general field of behaviourism. (I am specifically speaking here of the difference between proper terminology and the vernacular.)
PECS is very behavioural in nature and is used in a number of ABA programs. There are several levels of instruction, and the methods used are very detailed.
The strategies suggested by many speech therapists for encouraging/teaching communication can be described in behavioural terms but are actually based more in the science of speech and language development. This is one of the difficulties of classifying techniques within psychological paradigms - depending on the terminology used, one can describe the same thing as belonging to more than one "-ism."
Speech therapists will say to use temptation to encourage a child to speak. In other words, limit the child's access to desirable items or activities unless s/he asks for it (i.e., through speech, sign, PECS, or whatever method is being taught). If you know what the child wants, you say the word clearly and carefully, wait for the child to attempt to say it, and then repeat the word as you give the child what s/he asked for. This is what is called "manding" in Verbal Behaviour, a type of ABA. Of course, while it's a behavioural approach, it wasn't originally part of the repertoire of techniques used in teaching language via ABA.
A speech therapist might be better suited than I am to explain what approaches are used that are not ABA.
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