This blog post was originally written in 2010.
Combat Autism has a section on their site about being a Savvy Consumer. This section coupled with a recent article put out by the Chicago Tribune and response
to the article put out by Age of Autism, have inspired me to write a blog about being a Savvy Consumer/provider. We are constantly bombarded in all
areas of life by people advertising miracle cures, miracle cleaning products, and miracle cosmetics. Most of the time these things don't work. Unfortunately,
there are a lot of snake oil salesmen in the area of Autism as well. I am not writing this blog to criticize parents for using a variety of treatments
with their children. You are the parent and it is your decision. I am however writing this blog to help parents be a savvy consumer. That is, someone
who can look at the options, analyze the options, and determine which option is best for them. This first part of the blog will talk about how your
behavior analyst can help you evaluate treatments, the second part will include an example of evaluating articles discussing treatments, and the third
part will include an example of how hard it can be to evaluate options.
Behavior Analysts Evaluating Options
Part of the science of ABA is to evaluate procedures and their impacts on behavior. We can do this with behavioral techniques but we can also use the same analysis for other techniques. A large part of my training in graduate school was on how to analyze the impacts of a procedure. We were taught to analyze trends, look at the data to determine when to implement a new protocol, how to analyze 1 part of a package at a time, and how to do this analysis with just 1 person. It is very important that your behavior analyst knows how to do these things as well. Keep in communication with your behavior analysts about treatments/protocols that you would like to try so that you all can collect data. It is important to implement one change at a time so that you really know what is/isn't working for your child. If you don't mind spending money on something that might not be working, then you don't have to do this but if you really want to know what is necessary for your child these general steps should be followed:
- 1. Prior to starting a new protocol or treatment, tell your behavior analyst what behaviors you are hoping to change (speech, stimulatory behavior, tantrums, aggression, attending, etc)
- 2. Your behavior analyst will then collect data for you on these behaviors. This is called baseline and is used to see where the behavior was prior to starting the treatment
- 3. Your behavior analyst will talk to you about this part but essentially the next step is to start the new treatment and continue data collection
- 4. During the treatment, you want to make sure NO OTHER CHANGES are made so that you really know if it was this change that caused the behavior to change
- 5. Your behavior analyst will then analyze the data and see if the behavior increased/decreased/stayed the same. If the behavior did what you were hoping for it to do, then you will probably continue the treatment
- 6. To really establish control it is best to show this change in behavior a couple of times but that is not always ethical or advisable. The behavior analyst should talk to the parents once enough data is collected to see if they want to continue the protocol, discontinue the protocol, or do more analysis
Sometimes providers or parents will report that they don't need data because they can see the changes themselves. I know there have been many instances where I think to myself "I wish I had data on this because I am certain the behavior changed because of (protocol)." But I don't have the data so I can't be certain. Other changes could have occurred around the same time or sometimes you have been practicing a skill for so long and the child all the sudden can do the skill but it has nothing to do with the change in protocol (that is why doing data collection with and without the protocol a few times is helpful to establish that it was the protocol). There is also a plethora of psychological and sociological research that shows people can be biased in how they evaluate things. People can want to see a change so badly that they will say they did. This is not unique to treatments for autism. Even when collecting data it is helpful for the people doing the data collection to not know what the purpose is until after the data collection is done. It is also helpful to have two people collect data occasionally to ensure the data is being collected accurately.
I had originally planned on writing this section on how to critique media articles related to a set of articles that came out a few weeks ago. However,
since then a new article has come out and it is about ABA so I am going to use that as my example for now. This way people cannot say I am being biased
in my critique. As many of you may know there is a new study out that shows early intervention is effective. This study and the articles about the
study serve as an excellent example for teaching people how to critically evaluate what you see in the media. With the plethora of articles posted
everyday about autism, it is very important that consumers and providers can read the article and pick out weaknesses. Savvy consumers know how to
read the article and determine whether the article really proves what it is claiming to prove. If everyone in this field just accepted at face value
what people claim when writing about autism, very little would be accomplished. This blog will critique the CNN article about the Denver model and
then a few critiques about the study itself. I will conclude with a link to a better article about the study. The last article could probably be critiqued
as well but I don't have time to do it at the moment.
The CNN article isn't very long but it engages in a lot of "too good to be true" statements. Statements that sound too good to be true, typically are. Here are a few of the statements:
1. Parents can "learn within 6 hours of working with therapists" how to implement the Denver model. This is what the CNN article implies. However, the actual study says that parents received training and then continued to receive additional training in bimonthly meetings. Therefore, the parents did not just receive 6 hours of working with the therapists and go on their merry way. The intervention requires continuous parent training.
2. The children required "only 15 hours/wk of intervention" compared to the 40 hours of week in other studies. While it is true that the children received on average 15 hours/week from trained therapists, the CNN article fails to tell you that the parents provided an additional 16.9 hrs/wk of therapy. This is a total of 31.9 hours, which is fairly close to the other articles that say 30-40 hours/wk is necessary.
It is always important when reading articles to say to yourself "is this accurate?" If necessary, go to the actual study and read it for yourself. If it is not clear in the study, then it is probably not true and should be taken with a grain of salt. As I stated before, be especially careful of statements that sound too good to be true.
The CNN article also tries to contrast the Denver model with ABA. This is my biggest critique. Parents, schools, and providers are already confused enough about techniques for teaching autistic children and the CNN article is doing a huge disservice to everyone by making it seem like the Denver model is NOT ABA and that it is a new/novel approach. While it is true that the study is groundbreaking because it focuses on an age group that has not been focused on before, the approach and methodologies are not novel. Dr. Jack Michael, Dr. Sundberg, Dr. Carbone, Dr. Partington, Pierce, Schriebman, the Koegals, and many others have been doing research on all of the methodologies in this study for at least the past 20 years. The study itself acknowledges that the strategies are consistent with behavior analysis. The portrayal by CNN is merely media hype to make it seem like some great new intervention exists.
The only good thing I have to say about the CNN article is that it does conclude by saying more research needs to be conducted. It is always crucial to remember that just because one study shows a result, doesn't mean that it is now fact. Replications done by independent non-biased individuals need to be done in order to show that the same results consistently happen. Fortunately, while this study focuses on a different age group, a lot of the findings are similar to those of other early intervention studies so that gives this study a little more credence.
The Study Itself
Another issue with the CNN article is that after I read the CNN article, I was a little disgusted and not very happy with the people who conducted the Denver Model Study. That was until I actually read the Denver Model study. The CNN article makes it seem like the people doing the Denver Model Study thought they were doing something radically different and new, in fact the study makes it very clear that they are trying to determine the effectiveness of an intensive ABA approach compared to the standard early intervention programs provided by the community. Here are some key things to note about the Denver Model Study:
1. The children in the ESDM group received 15 hrs/week of therapy by TRAINED therapists and 16.9 hours/week from their parents. This is a total of 31.9 hours. In contrast, the control group only received 9 hrs/wk of therapy and it is not clear what type of therapy they received: OT, ABA, Speech, etc. Why is this important?
-It is not known whether the approach used by ESDM was more effective than the community approach because the ESDM group received more than double the amount of intervention than the the community approach.
-It is also not known what aspects of the ESDM were more effective because we don't know what was being done in the community programs. Without this information, it is impossible to make real conclusions.
-It is also not known the level of training of the people providing services in the community based intervention. It is possible that the level of training had an influence on the effectiveness of the intervention.
-The only thing that can be concluded from this information is: when a child has more hours of intervention, the child will make more progress
2. Parents in the ESDM group received initial parent training and then parent training on a bimonthly basis. Parents in the control group were provided with handouts, resources, etc that they may or may not have read. Why is this important?
-It is impossible to know if parent training was easier to do using the ESDM model because it wasn't even attempted with the community model
-It is also not known now if the children in the ESDM group did better because of the intervention provided by the therapists, the training provided to their parents, the therapy provided by their parents, or a combination of all three. Each of these components needs to be evaluated
-All that can be gained from this information is that parental involvement most likely leads to larger gains. There is already a ton of research to indicate this is true so we aren't really learning anything new.
3. The best thing about this study is that it is the first to show that children at a very young age can make significant progress with early intervention. Unfortunately, we still do not know what components are necessary. Based on this article it would seem that the children need to have a significant number of hours of intervention whether provided by therapists or parents.
4. This article also shows that a well organized approach such as the Denver Model could be better than the typically used community model. Unfortunately, it does not show what aspects of the community model need to change: should the children receive more hours, should the parents receive more training, should the approach/methodology of the community model be changed? This study indicates that it is possible that all of these things need to change. Yet, it does not pinpoint which of these things needs to change.
This study is also helpful though because it leads to host of a future research questions here are a few of them:
1. Component analysis of the Denver Model - which aspects of the model are critical: level of hours, parental involvement, methodologies. Each of these components needs to be analyzed separately and in combinations to determine which are key
2. Comparing ease of parent training using the Denver Model vs training the parents to use other approaches. It might be that parents understand the Denver model better but it needs to be researched first
3. Comparing natural environment training as was done in the Denver Model to the methodologies used in previous Early Intervention studies to see if there is a difference in skill acquisition. Also could compare combining the two methodologies
4. A true control group of children that do not receive intervention, although this might be tricky because it is not very ethical to not provide services to children who are eligible for them and by law all children under the age of 3 who meet criteria are eligible for services.
The best article I have read about this study can be found here: http://www.sciencedaily.com/
Real Life Examples
Facilitated communication was developed in the 70s in Australia. Facilitated Communication occurs when a person who cannot communicate such as someone with autism or mental retardation is given a board with letters and a "faciltator" who holds their arm to help them type. When the technique first came out, it had not been researched but thousands of families used it with their children. Families were so excited to finally be able to communicate with their children. The children started typing elaborate poems and sharing what their experiences were like. I am not saying that people with autism cannot learn to type or do not have elaborate poems and experiences to share. The issue with FC is the presence of the FACILITATOR. What began as a seemingly harmless treatment and helpful communicative device, soon become the source of absolute terror for some families. Soon the children were starting to accuse their fathers of molesting them. Some fathers were even taken to jail, families divorced or separated, children were taken from their homes. FC is a perfect example of what can happen when people just jump on a band wagon and start using a treatment without researching it first and without considering what could really be happening. I know a lot of people think "well it couldn't hurt" but with FC, that was far from true.
So what was really happening with FC? Were these children being molested? NO. Turns out the facilitator was the one typing the words. Numerous peer reviewed studies show that FC is a farce. When double blind studies were done where the facilitator and the child were shown different pictures, the child could not type what he was seeing. For example, if the facilitator was shown an apple and the child was shown a banana and the experimenter said "what is it?" the child would not type the right answer even with the facilitator holding the child's hand. Basically all that was happening with FC was the Ougi effect. The facilitator was moving the child's hand. The facilitator was not moving the child's hand on purpose but it was still happening.
One thing that is odd to me, is there are still proponents of FC who completely disregard the plethora of published peer reviewed studies and continue to use the procedure even though it is most likely the facilitator communicating, not the child. As I mentioned earlier, it is one thing for the child or adult to type on their own or have someone help them type when they are first learning but to constantly have a facilitator and claim that the child is talking, has been shown in studies to be completely bogus. For a more in depth article on FC with sources go here
The take home point with this blog is no matter how good a product or treatment sounds, no matter how well it is marketed, it can still be a fraud. Please review all options carefully and either collect data for your child to see your child’s progress (or lack of progress) or look for well designed, peer reviewed articles that support the procedure/product you are wanting to use.