In my third post on the topic of Evidence Based Interventions for autism, I plan to borrow heavily from an analysis in the BMJ authored by Kerridge, Lowe, and Henry. This document was sent to me by Maria Lujan after my first post on EBIs. Thank you, Maria.
While I plan to use this paper’s discussion of EBM as a framework, I will adapt its principle arguments to the arena of autism treatments.
I want to clearly state that by writing about EBIs for autism, I am neither endorsing nor condemning them. I see this as a very ambiguous issue, full of promise and fraught with peril for the autistic children and adults who may (or may not) receive services as a result of this form of decision-making. One of the primary ongoing debates in the autism community is one of treatment – Biomedical or behavioral? Cure or remediation? Science-based or faith-based? Proven or speculative? Helpful or harmful? These are all, in my view, variations of the same argument, rephrased and rehashed over and over again. What is really being examined when these debates take place is how, when, and why we should provide supports to autistic people. What should the goals of these supports be? Who has the right to make treatment decisions, and who is responsible – fiscally and actually – for carrying them out? What value do various treatment/intervention approaches have?
This, then, is a discussion of Consequentialism as it relates to EBM (I will use the term EBM: Evidence-Based Medicine as a general term and EBI: Evidence-Based Intervention as an autism-specific term).
I’ll begin, as I so often prefer to do, with a definition:
Consequentialism: the proposition that the worth of an action can be assessed by the measurement of its consequences.
There are, as the referenced article states, three main philosophical objections to EBM. I’d like to explore how these objections apply to EBIs.
Many important outcomes of treatment cannot be measured
This is one of the most commonly encountered debates in the autism community. What constitutes a “good” outcome? My family’s prevailing view has typically been that our goal in supporting Jason is that he is as happy as can be – that we provide a framework of supports that are as appropriate to him as that we provide to his brothers and each other. The fact that he is autistic is simply one factor in that decision making process. Other families may take precisely the same approach, but end up with a completely different, but entirely appropriate framework for their young child.
Jason, for example, has never committed self-injurious behavior. Therefore, dealing with that specific issue has not been on our radar screen. Had it been, we could have examined the evidence of various treatments to arrive at a decision as to how support Jason in reducing this destructive behavior. One possibility would have been a behaviorist approach such as ABA. Another would be a psychiatric approach such as medication. Another would consist of 24-hour oversight by people who have proven to be successful at diverting him from this behavior through other means. I really don’t know, as we have not dealt with a situation of this difficult nature. In this example, though the desired Outcome may be the same as my son’s current situation, the means required to get there may look entirely different. So, to establish a desired Outcome (a necessity for EBM, as it requires a definition of the goal of treatment) proves to be highly difficult. It is likely to be either too broad (i.e. maximize quality of life, which could mean different things to different people) or too narrow (eliminate self-injurious behavior) which would not apply to my son, who has a clinical diagnosis of classic autism. I can’t fathom what definition would be appropriate for “autism treatment” as a whole, since autistic people are anything but a homogenous community.
Additional to the problems inherent in defining Outcomes are the problems in measuring the Outcomes. Is the positive outcome supposed to be in effect at age 5, 15, or 50? During periods of duress, periods of established expectations, or at all times? Is success measured against a paradigm of perfection in behavior, or against a more accurate human model of behavior with all of its flaws? These are all important issues to consider as a “blue-ribbon” panel of experts and advocates sit down to decide the fate of our autistic friends and family members.
It may be impossible to decide between competing claims of different stakeholders
This is a biggie. And this is one of my main concerns about EBI. There is so little agreement in those aspects of the autism community that I have been exposed to about what are safe treatments, effective treatments, ethical treatments.
Here is where I think everyone needs to bite their tongue for a moment and listen to whatever voice of reason we all have in the back of our minds that has allowed us humans to function successfully in society for tens of thousands of years.
We all think we are right. This is predictable and ok, and easily understood with a basic understanding of human psychology. But some of us have either the power or the impetus to make sure that our particular brand of “right” is exerted upon ALL other people.
Gosh, it sure would be nice to know with such absolute, unadulterated certainty that something like Chelation Therapy or Hyperbaric Oxygen Therapy would clearly benefit (and, at the same time, not harm) any and all autistic subjects. If one were to know this so certainly and unarguably, then one may be motivated to make sure that all those who do not believe in their efficacy would be forced to select only from that treatment. Unfortunately, when the results of an EBM process go into effect, this has the potential to be the result. How do we guard against this – or, in other words, how do we make sure that scientific results are brought to bear in benefiting the appropriate subject group of individuals, but are not so strongly engrained in the activities and economics of the treatment community that they become the ONLY choice for the subject group?
What if the best therapy for a given individual is some sort of speech therapy in a group setting? The subject herself, the subjects’ parents, and the various teachers and professionals who are involved in the subject’s life all agree that this is the most appropriate and beneficial treatment at this juncture. Not only will she gain some improved speech and language skills, but also some social strategies as well due to the group setting. But wait … insurance won’t help cover it. “We follow evidence-based medicine protocol, and group speech therapy is not recommended by the committee”. The state won’t cover it – “ABA is the most effective therapy, according to our evidence-based medicine expert panel. We’ll spend $160 per day to fund that, but we won’t spend $40 per week for whatever it is you are asking for. We don't know what it is, but we do know that it is NOT an approved EBI.”
I also feel that it is impossible to quantify everyday “treatment” or “handling” of autistic children as relates to a therapeutic intervention. Since the simple act of being a good, loving parent holds virtually no commercial promise, the likelihood of incorporating that into the research literature is very slim. To quote the article, “Given the complexities of the issues surrounding resource allocation, the drive to seek certainty and simplicity at the policy level is understandable. However, the large quantities of trial data required to meet the standards of evidence based medicine are available for relatively few interventions.”
In other words, only those methods which have a long clinical history or have sufficient commercial promise to generate significant and immediate research dollars have any chance at being considered as “Evidence”. In my experience, the best commentator on the difference between named interventions and simple good parenting techniques has been Autism Diva, and I welcome her input/comments on this topic.
EBM may lead to activities that seem at odds with common morality
Uh oh. This issue can get a little hot. Please set aside all of your existing positions for a minute and consider some (personally biased) points on this topic.
Point #1:
I believe that morality is universal. I am not a believer in Moral Relativism, as are seemingly so many of my contemporaries. I believe that morality is quite well known and understood worldwide and that right is right and wrong is wrong. I am not referring to formulated suppositions such as “Is firing a struggling single mother of two for stealing $5 from petty cash so she could afford dinner for her kids immoral?” Save your grade-school moral dilemmas for another argument or the appropriate party game. What I am talking about is this: Viewing autistic people as anything less than a whole person is WRONG. Though we all must acknowledge that autism – a defined disability – presents numerous challenges to the individual, ranging from social deficits to a lack of ability to communicate or even feed oneself independently, losing sight of the individual human being due to the presentation of deficits is WRONG. How can EBIs factor in this aspect?
If I were a professional working with autistic people (I am not), my compensation and ability to continue in my chosen career may depend on adhering to established EBIs. What if I know, or even suspect, that the treatment I am required to provide compromises my subject’s dignity? It would then become immediately immoral for me to continue.
Point #2:
Trusting that the moral transgression postulated in point #1 is not going to happen, or that the preponderance of subjects benefiting from EBIs outweighs the occasional transgression is irresponsible.
Point #3
Following points 1 and 2, it then becomes our responsibility as people who care about the welfare of autistics to ensure that principles of ethics and morality are adhered to at every stage of attempting to establish EBIs. The possibility of moral transgressions should not prevent the effort from taking place – that would be ludicrous and counterproductive, and actually constitute a moral violation in and of itself.
Here I have covered the three main objections to EBIs based on the concept of Consequentialism.
It would be easy to assume, based on the fact that I am highlighting some weaknesses of the Evidence-Base approach, that I am opposed to it. This is not the case, and in actuality I am a strict adherent to the value of scientific contributions to the field of autism knowledge. One point I would like any reader to come away with from this post is that it is the people involved in the decision-making process and not the evidence itself that poses the most significant threat of misuse of this powerful economic/political tool. For those of you who have the ability to wield this power, I hope you carefully consider the extremely wide range of subjects that your decisions will influence.
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5 comments:
One point I would like any reader to come away with from this post is that it is the people involved in the decision-making process and not the evidence itself that poses the most significant threat of misuse of this powerful economic/political tool.
I think you nipped it in the bud.
"One point I would like any reader to come away with from this post is that it is the people involved in the decision-making process and not the evidence itself that poses the most significant threat of misuse"
The same can be said about diagnosis criteria as well as interventions, can it not?
A little late for my post, I just came upon your blog recently, but I was so glad to hear you in your comment posts and blog differentiate between strict discrete trial training (DTT or Lovaas method) and ABA in general.
So few on the web and critics of ABA understand that ABA is more than just DTT. They don't understand functional communication training, or that reinforcement can also come in the form of hugs, tickles, and genuine affection.
Another huge problem is that the evidence that many behavior analysts speak of is often referring to a procedure to address one or a few behaviors. When a behavior analyst says "ABA has the most research behind it," it is in reference to the methods and procedures which they employ.
So I would not say, "ABA cures kids with autism."
I would say:
"Behavior analytic procedures have proven to be effective and changing a range of behaviors, particularly problem behaviors that are occurring because the individual is havaing a communication breakdown."
For example: A child who screams and drops in front of the fridge because their parents would come over and give him milk.
The child is taught to take their parents hand, lead them to the fridge, then sign "Milk".
This sort of procedure is not going to cure autism, but it certainly may result in fewer tantrums, and an increase in communication between parent and child.
The other thing that I think no one wants to admit is that there may be a limit to just how well some kids can do in terms to making functional gains. Some kids are going to gain a lot of independent skills and maybe get into a mainstream classroom. For others, the severity of their disablity may prevent that. Much like you said about your son not engaging in SIB. The outcome measures are way different for your son, than someone who is hospitolizing themseves once a month. The individual who hospitolizes themself, may not make significant IQ gains or score better on the Vineland, but if they stop hurting themselves enough to stay out of the hospitol, that's pretty damn significant.
Keith -
I understand and agree witha portion of what you are saying. At the same time, I acknowledge that ABA (any kind, not just the high-intensity Lovaasian type) has well known problems and that those who practice its application must be very wary.
I look forward to the day that Behavioral interventions - which is really what we are talking about here, are givenproper labels so we can dicsuss them more clearly. I also would like to see the equivalent of a Review Board to carefully look at different methodologies, and have the review board be made up of autistic people of varying backgrounds. I think that by marrying a sound, ethical practice and the experience of behaviorists and autistics, we could see a method emerge that provided maximum benefit to the greatest number of individuals.
I understand your point, but I think it is dangerous to demand all interventions chosen by parents to be covered by state or insurance, regardless of evidence considering their efficiency or even safety.
Because, while some parents will choose group speech therapy, others will choose chelation, Lupron or hyperbaric oxygen treatment. It is bad enough that some parents do these things anyway, but at least state and insurance funds haven't to pay for them.
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