Interverbal: Reviews of Autism Statements and Research
A critical look at science in the autism world
Tuesday, November 17, 2009
What I Have Learned
A few years back when I was still a Masters student, I found myself in discussion with a mother of a young child diagnosed with autism. She predicted that when I had begun my professional career that my opinions on a variety of topics such as the vaccine etiology of autism and the value of Neurodiversity would change dramatically. I did not find her suggestion to be dismissive. In fact I found it worthwhile as an evaluative exercise.
Well, I have spent several years now in a professional capacity. The time seems ripe to engage in a full analysis. In short, some of my opinions have certainly changed or altered, and some have not. Some of my readers may disagree or even feel annoyed by my comments, but….. no apologies. The one thing that truly has changed is that I now feel better about the opinions I hold than in any time in the past.
1) I believe as strongly as I ever did that autistics themselves are the primary stakeholders in discussions about autism. That autistics need to be on the directory and executive boards of major autism advocacy/education groups.
2) I believe that seeing autism, only in terms of a collection of deficits is really bad idea. I do not think this is a good approach in any developmental difference, delay, or disorder.
3) However, I have also seen that some of our parents truly are heroic. Some of our kids meeting criteria for autism take significantly more time and care. I have seen profound labors of love. Such parents are heroes, and they deserve recognition as such…. Period…. and this is a change of opinion for me.
4) I feel much better about collaborating with non-behaviorists than I have in the past. It has at least been refreshing and interesting. Also, I take satisfaction in the event that our analyses conflict, that I produced the decidedly superior analysis (just kidding…. Well mostly).
5) I have enjoyed doing voluntary additional coursework towards gaining a Gifted and Talented teaching endorsement, in the event (it has already happened) that some of my students with special needs also have areas of genuine giftedness. G&T teaching is mostly run by the constructivist school of thought, which is very different from behavior analysis. However I am fond of it. I have learned some valuable tips about how to better direct intrinsic reinforcers with high ability students
6) G&T education has also taught me some perspective. I have learned than some problems that I thought or heard were special problems within behavior analysis are actually endemic to the whole field of education. I cite insularity as a particular example. Also like the autism field, I have noticed that G&T education also has a whole range of popular lousy arguments that pop up time and time again. My least favorite being the argument that we should provide specialized educational services to gifted and talented kids because it might later benefit us in some way (i.e. They invent a cure for cancer).
7) So, I suppose you can say that in some ways, I like behavior analysis even more than I did in the past. I like the way my behavior analytic colleagues in public education do it; down to earth, practical, fun. They do more with fewer resources and I think they might even have more fun sometimes.
8) At the same time, because I am one of the few people with a strong interest in behavior analysis itself in our district, I feel more separated from some of the aspects of behavior analysis as a field that I do not like. And I think this has been a good thing.
9) It used to drive me crazy when people would bag on behavior analysis. I spent a lot of time trying to convince people why they were wrong or mistaken about some problem they had with ABA. It used to truly upset me. I no longer feel the same desire to engage them, especially when I know they are grievously wrong, as opposed to just having a minor misunderstanding.
10) Probably the biggest change of all is that I no longer feel much patience with poor or illogical academic arguments, whatever the flavor. I do not feel the same interest in deconstructing the latest bit of alternative autism medicine from our friends elsewhere on the internet. Or explaining why anyone who says that prevalence rate of autism was 1 per 10,000 and it is now 1 per 100 should have their license to practice amateur epidemiology promptly revoked. Or showing how an anti-vaccine internet group that reviews vaccine epidemiology isn’t even doing basic addition problems correctly.
11) And this is just as true within the neurodiversity community. There have been times I have gone to read a post on a neurodiversity blog, and I realized, that I did not agree with a single thing that was written. This doesn’t bother me the way it did in years past. It also bothers me less now when I tell someone “you know what, I completely disagree”.
12) At the same time I have the same love of a good academic analysis that I always had. In fact I have come to see the dichotomy between academic and practical analyses as being somewhat artificial.
13) So, there you have it. Maybe we will try this again in another 3 years and see what, if anything has changed.
I am going to start by offering a bold premise; there are other good autism information groups, but nothing else that blends science and advocacy as well the Hub. I say this not to assign a “good job”, gold star to the hub, but simply to recite a fact. I feel comfortable recommending others to the hub when searching for basic or advanced autism information. This is not a privilege I extend to other places or groups; even one’s who claim good science or advocacy.
So, it is an honor to write a blog included in the hub and yet…. It also is not. I think the “honor” is in the quality of our thinking and writing, it comes from us. It is not implicit; it can diminish or even go away entirely. The seeming goals of Hub; namely, the countering of bad autism science and promotion of autistic rights might be worthy goals, but not enough in themselves. I suppose then you could say that I find the Hub honorable, but only as long as we behave honorably. We behave honorably by neither sacrificing science, nor losing our strong ethical base. Also, by keeping our logic intact even on difficult issues and by carefully explaining in such a way that teaches others and not merely engaging in drive-by ethics or the scientific, intellectual variant of schoolyard bullying.
To challenge and substantiate, that is the direction I want to see us take….. and largely, we do.
Since its founding in 2006, the Hub has only gotten bigger. I swear, it almost seems impossible to keep track of all the newly added blogs. And with this expansion have come new faces, new ideas, and sometimes more disagreements. Sometimes I almost feel, as if I wish the Hub would go back to the originals. But not really…..
I think it was always the intention for the Hub to grow, and even important…. maybe even inevitable, that it do so. I also think that the neurodiversity movement, as it pertains to autism, to still be in its tumultuous childhood. This is in spite of it being at least 15 years old and the broader disabilities rights movement being older still. I think because this movement is still developing there are questions yet to be formally answered.
I am also going to offer a prediction. I predict that these questions below will not spontaneously go away. And that they will persist and be a continuing source of conflict among various persons in the hub (and not just a few individuals).
1. What constitutes respectful language toward autistics on the Hub. 2. To what extent is intra-Hub debate permissible, on what issues, and by whom?
3. To what extent is criticism of the Hub’s general direction permissible?
4. To what extent is one obligated to deal with unscientific or unethical comments that appear on one’s blog?
5. What are the goals of the Hub, stated more specifically than they are now?
Shall I compare thee to a norm referenced score? Thou might just be two deviations from the mean. Rough charting makes it hard to know for sure. And lack of data may create a lean.
Sometimes, too great the fallacy exists. And often is the reasoning post hoc. And in irrationality the issue mists. By natures design we are fetter’d; such is thy lot.
But by this, thy reasoning, good data shall not fade. Nor lose possession of great virtue, epistemological. Nor shall any reliable measure be un-made. When under scrutiny most logical.
So long as logicians syllogize, and parents sigh. So, long as we push, and continue to try.
From what I can tell, different situations lead to different types of bullying. Maybe some of these are not really bullying, but they are grey areas and still a concern.
Age discrepant rough-and-tumble play
This occurs when an older child plays too roughly with a younger one. This may not be true bullying per se; in fact we probably wouldn’t consider it as such if both children were the same age. Understand that there are probably not bad intentions here, just a case of the older child not understanding his/her strength. Often just a reminder to both children about what the expectations are for acceptable play e.g. (no wrestling, tripping, etc) is sufficient.
Teasing
Sometimes teasing and jokes are fine and sometimes it turns into bullying or is interpreted as such. When dealing with young children it falls to adults to keep an eye on the situation and control it if necessary. However, if things do get grey area, it doesn’t require a nuclear level response. Often a simple verbal prompt is sufficient. Also, providing specific training where students learn to indicate that they do not like or appreciate certain jokes can be helpful.
Opportunistic Bullying
Occurs when there is a true power differential by age, size, behavior, or cultural factors. The bully engages is physically aggressive or verbally demeaning behavior meant to hurt or harm. This occurs in situations where the bully is unlikely to be caught. In school providing adequate supervision in hallways, recess areas, and lunch rooms goes a long way to helping prevent problems. Popular culture likes to present this type of bully as coming from a disadvantaged or broken home. In my experience sometimes this is true and sometimes it is not. Bullying seems to be a trait that can appear even in kids from very stable homes.
“Good citizenship training” for everyone in a school (including potential bullies) is purported to help reduce instances of bullying, but I am ignorant of any method with sufficient quantities of research behind it to back up that claim. I think that it is most important to remember that there is no perfect solution for this type of bully. Remember that bullying is an ancient human behavior and that like all such traits it is impossible to totally eradicate even on the small scale.
Remember that:
While not exclusive to children, in some cases bullying is an age specific behavior that will be naturally countered by other contingencies as maturation occurs.
Bullying is more likely to occur among children among different ages and sizes, simply by benefit of the children not realizing their own strength.
Rather than repel potential bullies, the tough-guy act can actually attract people looking for a fight.
Training kids to be polite and assertive and to bring in an adult’s help is usually a better tactic when dealing with a bully.
Some young people of a certain age (read: some teenagers) like to make silly or flippant remarks, especially to strangers. This can be interpreted as bullying, but often it is simply young people engaging in an age-appropriate misbehavior (an oxymoron….. I know). Often smiling or telling an appropriate joke of your own is sufficient to set everyone at ease.
Some people seem to be naturally intimidated by teenagers, even ones who are not big and strong. Don’t be, they are just young-adults/big-kids. I have seen adults put on a tough-guy act around teenagers and honestly I think it is because they are intimidated by them. In my experience this usually alienates the kids.
Opportunistic bullies work by isolating the person they bully. Teach others not to be afraid to seek help.
While bullying as a human trait may never go away, that does not mean that specific cases of bullying are hopeless. Some sort of help is almost always available.
A few years back I was supervising an afternoon recess. I was watching Mike, a young man with various disabilities (not autism), playing American football with some other boys his age (about 10). The boys were practicing hiking the football (the initial quick pass backwards that officially begins each play), when rather suddenly Mike jumped forward and called out “hike!”. The ball was passed, but another young man rather roughly pushed him back and took his place and the other laughed.
I was angry; this smacked of bullying, and the young man who had done the pushing had a reputation as sometimes getting up to mischief (sassing teachers, sulking, etc.). I headed over to have a little talk with this young man. However, while I was on my way he stepped back and another young man took his place, and then another boy hopped forward. A few turn later Mike went forward and received his hike without concern. I looked again at the group of boys and I realized there was something of a line. It wasn’t a very traditional line, I do not think it would have passed muster in a school hallway, but it was a line none the less.
Mike had jumped this line pure and simple; he had cut in front of the other boy. Nor was he the only one to try, as I continued to watch, other kids also tried to cut and this generally ended with the same results. I did not quite grasp why they occasionally tried to line- jump. However, they seemed to think it was funny whenever someone tried.
In this case what I saw wasn’t bullying, it was young people engaging in rough-and-tumble play. This type of play appeals to certain kids, both boys and girls, students with and without disabilities. Far from being an opportunistic bully, the young man was treating Mike exactly as he would any of his typically developing peers. And Mike clearly grasped this little group’s rules as he demonstrated by laughing after he was pushed and later correctly only stepping in on his appointed turn. I would later come to know this young man as a true friend to Mike and that he had been friendly and welcoming toward him for years.
This was inclusion, but inclusion based on this little group’s rules. There is this teacher’s ideal vision where play-based inclusion involves an orderly board game, or kite flying, or polite discussion of one’s favorite colors. This is true in certain cases, but it isn’t going to fly with a set of rough- and- tumble 10 year olds who are on their outside play-time. And if a student with disabilities gravitates towards that set, and is naturally fully included, then this is typical play. You want inclusion…. you got it.
I am aware there is some concern over proposals in various States to force insurance providers to cover ABA as it relates to autism. I am going to take what may be an unpopular position and argue in favor of such. I understand this may frustrate some of my fellow bloggers; and while this is unfortunate, I think most of our peers at the hub will at least hear my reasons. Maybe a question-answer format will best address this?
Q. Why support the proposals regarding Insurance support for ABA and autism? A. All students have a right to an educational method that actually can successfully teach them. The idea of what constitutes appropriate goals of education is in debate. Regardless, the zeitgeist in the human service field is toward evidence based practice. This concept props up research based teaching and begins to fade pure theory based teaching.
Currently there are four methods of teaching relative to autism that have some level of support. One is ABA, also TEACCH, Occupational therapy, and speech therapy. That is it…. There is nothing else with an evidence base beyond quasi-experimental designs. I will advocate for any of these four, although speech and OT are often alreadt covered under insurance.
Q. But ABA has been called into question? A. The groups designs have been questioned to a degree, not the single case designs, of which there are multiple examples and which are consistent and well designed for a number of techniques. ABA literature in autism has developed to the point where there are often multiple research based techniques available for teaching the same skill. This is not opinion, it is fact.
Q. So, why support the law if it only supports ABA? A. I am all for allowing TEACCH to written in as well, but I am not going to pull my support for that reason. It is not personal; I would still support this proposal even if it was TEACCH that was being promoted.
Q. But ABA targets autistic behaviors, not just academics, right? A. Yes it does…. so advocate for a focus on academics and what you believe to be more appropriate behavioral goals. I am not unsympathetic, but I will not pull my support for what would have to be a shift of the whole human service field. If you think that general eclectic or Floortime programs are somehow even one mote more respectful of inherent autistic differences then you are simply wrong. In fact I cannot think of any programs that can be considered exemplary in this regard, not even Montessori schools. If that changes I am happy to revise my opinion.
Q. This medicalizes autism, don’t you think? A. Autism is already deeply medicalized. It is a billable code for many… many services. The services range from the evidence based to Jungian/Tibetan sand play therapy, under the guise of counseling for teens with autism.
Q. Well, then we shouldn’t feed further into the medicalization of autism, right? A. Fine, so advocate that terms be changed to better fit the view of autism you wish to promote. The reality is some autistic students need tutoring or additional educational work, just like some typically developing students do. They still have a right to have substantiated practices used to educate them….again… just like their typically developing students do.
Q. Then why not put them into standard tutoring, just like their typically developing peers? A. Do not confuse equality and equity. They are not the same thing.
It is disappointing for me whenever I hear someone use the word “retard” as an insult. I am sure this is not a unique experience amongst hub bloggers. Nor are we likely to be the only ones who feel this way. The Special Olympics has even come out with an r-word petition.
But in some ways… maybe many ways, this isn’t going to change things. I am prepared to argue that the use of word “retard” as a pejorative is most common (although grown ups make this sort of error too) among teens. I want to focus on that in this post. In my view, there are rather unique motivation factors that influence teen behavior and make this behavior particularly likely.
There seems to almost be a mystique attached to teenage verbal misbehavior by our culture. References are made to hormonal imbalances and changing brain structures as if layman’s appeals to the medical model are somehow a sufficient answer in and of themselves.
In contrast I tend to look at the fact that teens are by definition at a point of transition. The simple and often direct contingencies of behavior management that have governed their lives up till this point are being faded and more cognitive or delayed rule-based-behavior contingencies are replacing them. Concepts, memes, and ideals become increasingly important. As these shifts take over, the teens become more able to discriminate contradictions, exceptions, and inconsistencies.
However, until these discriminations are firm, there will be uncertainty as to what constitutes acceptable limits of a given contingency. The teens will, as we say “test the boundaries”. Moreover, if a teacher or caregiver adds in a simple contingency to counter this, there may well be an inadvertent counter contingency. This happens all the time with swearing. It is punished when emitted in front of a teacher, but reinforced in the presence of peers. This reinforcing aspect is possibly increased by aggression reinforcers, based on a time when emitting the same word was punished. In other words, the more it is punished in one situation the more reinforcing it is in another.
I have spent a fair amount of time working with teens both with and without disabilities. It seemed the more I discouraged the use of this term the more the teens employed it. Some used it, I think; to get a reaction out of me. So, I made a classic mistake. I increased the severity of my reaction. Whereas before, I gave a verbal reprimand, I now gave written write-ups. This did eliminate the behavior around me, but it continued when I was not around. I wonder in the end, if my actions made a lick of difference in this regard.
Upon reflection maybe there was another strategy. Maybe instead of punishment I could have employed a specific explanation illustrating the rule based contingencies that controlled my own behavior. In other words, I could explain why I chose not to use the word “retard” as a pejorative. This may or may not result in a shift in the contingencies.
Ultimately, if I am correct about the managing contingencies, then strategies where the use of the word “retard” is turned into the equivalent of a swear word, will only increase the usage of this expression.
There is yet another strategy too. I think it is inevitable that many teens are going to at one point or another emit comments that are rude, cruel, or derogatory toward an entire classification of people. Perhaps then, another strategy is to tolerate the misbehavior to degree. This does not imply acceptance, it implies that we understand that this is likely to be an age specific misbehavior that will be intrinsically countered as maturation occurs. If this is true, then our duty is then to provide appropriate models of the verbal behavior employed by adults in our society.
