Friday, August 24, 2007
I could write pages and pages about how I appreciate my wife's skills and efforts at mothering our kids. Then I could write many more about my own Mom. Instead, I submit this link, which provides a humorous, yet universal commentary on Moms.
Wednesday, August 22, 2007
(Oh, by the way, the Dad Moment of this experience is that neither kid cared about the view - it was way too big to process. They cared about the hummingbird feeders affixed to the eaves of the tower.)
Dad Moment #3
On Monday, I came home from work and got out of my car. As we are on the tail end of a heatwave, and as I live inland in a semi-arid climate, I was expecting a blast of heat as I exited my vehicle. Instead, I immediately noticed that my world was at the perfect temperature. It was one of those extremely rare, exquisitely well-balanced moments where, given the choice and the power, you would keep the current ambient temperature absolutely the same for the rest of your life.
So I raced into the house and announced that, in light of the perfect weather outside, we need to go for a walk! The kids and the dogs were thrilled, but Lisa - though wanting to go - was regrettably in the middle of an uninterruptable task. So, since I had already let the proverbial cat out of the bag, I had to follow through and take the clan for a walk. This means that I - one man - would strap a papoose-style carrier to my chest for 7-month old Colin, take big ol' Chance and new puppy Marley on a leash in each hand, and still somehow have to guide 5-year old Jason and 4-year old Tyler on a walk. Just us 6 guys! Its a good thing we live on a quiet country road - only two cars passed during our stroll.
Friday, August 17, 2007
The author of the document is Martha Leary, MA, CCC-SLP. Martha has worked with autistic people and their families for over 30 years. I was fortunate enough to see one of Martha’s presentations recently, and thoroughly enjoyed the experience and perspective she brings to the issue – especially as relates to language and movement differences in autistic people. This brief essay is a summary of how movement and communication differences are inherent to the label of autism, and how they affect people’s perceptions of autism as a disorder.
I feel this is a poignant, appropriate summary that could help interested NT readers gain some perspective in their understanding of autistic people. Please comment and let myself and the author know what you think.
Movement Differences for people with autism
Martha R. Leary
The diagnosis of autism is not prescriptive of the type of supports needed for assisting the person to participate, relate and communicate. Relationship is the basis for participation and communication, for all people. People with autism often communicate, behave and participate in unique, very personal ways that may be difficult to relate to and understand. Differences in the way people are able to use their bodies and focus their attention leads many people to assume that a person does not care to participate or communicate and does not desire relationship. These assumptions affect our expectations for people, the way we speak with them and the educational and social opportunities we offer to them. Our assumptions color the support we give to people.
People labeled with autism move their bodies in ways that are unfamiliar to most of us. Some people rock, repeatedly touch an object, jump and finger posture while other people come to a standstill in a doorway, sit until cued to move and turn away when someone beckons. As professionals trained to believe what we see, most of us have interpreted these movements as volitional behaviors, communicative acts signaling avoidance of interaction and evidence of mental retardation. We have taken a ‘literal’ interpretation of what we see and extended it into a notion of what constitutes autism.
Some behaviors may not be intentional, but an artifact of the difficulties a person may have in organizing and regulating sensation and movement. Other behaviors may be subtle signs of the desire for relationship or expressions of meaning. When we focus on our standard expectations for behavior and communication in our fast paced, super technological world, we may miss opportunities to know and understand people who are likely among the most patient and best listeners on the planet.
Detailed personal descriptions of sensation and movement differences found in other disabilities have given us some clues as to what it may be like to deal with symptoms such as compelling impulses, a loss of conscious control, lack of initiation, akinetic moments and unusual ways of being in the world. Leary and Hill (1996) analyzed the literature on symptoms associated with established movement disorders and those associated with autism. The greatest difference among these disabilities was the interpretation of the symptoms. In Tourette syndrome, Parkinsonism and Catatonia, there was a neurological interpretation of symptoms. There was a social interpretation of the same symptoms if the person had a label of autism. That which is called a ‘tic’ in a person with Tourette syndrome is most often considered a ‘behavior’ (and often a conscious choice) in a person with autism. A ‘bark’ by a person with Tourette or another movement disorder is appropriately supported, in autism it is a behavior to be reduced often with a negative intervention.
Humans carry inside, an image of themselves that includes reasons for and the possibility of change. We need to know that we are OK just as we are, even though there are things we may want to learn or to do better. In our journey of change, we need allies who will collaborate with us to find the most comfortable and effective ways for us to learn new ways to participate in our families, with our friends and as contributing members of our communities. Supports for people with autism should reflect the respect and dignity due to all people and address the challenges with which people struggle in organizing and regulating themselves in response to the sensory environment and their movement differences.
Wednesday, August 15, 2007
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.
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.
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.
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.
Sunday, August 12, 2007
Taken in their simplest form, it seems like a no-brainer that EBI’s are the preferred method of treatments to offer for any number of conditions, including autism. But upon further consideration, the issue is far more complicated. What I’d like to do here is to list some of the serious concerns I have about EBIs.
(I would like to point out that there is probably not an original thought or concept on this list. While I am not plagiarizing – I am simply summarizing some of the problem areas that have occurred to me – I am aware that much thought has been given to this topic, many medical and ethics professionals have hashed out the nuances of this issue, and my “glancing blow” is not likely to generate any revolutionary concepts. At the same time, I don’t believe enough debate has taken place within the autism community on this subject, and I would like to see more opinions – especially those who outstrip my own in terms of practical experience and academic fluency.)
Who is Guiding the Process?
The first thing I would be concerned about in relation to EBIs is; In any given effort at establishing EBIs, who are the primary players in starting the process and seeing the process through? Simple Conflict-of-Interest issues are one consideration here, self-fulfilling prophecy is another.
I recall reading a post by one of my favorite bloggers – Prometheus – which stated that, in many research scenarios, one finds just exactly what one is looking for, regardless of whether it is true or not. It is very difficult to cull various forms of bias from research, and the design of the process that is expected to arrive at the correct EBI must be very carefully considered and reviewed for the correct conclusion to be reached.
Let me throw out just one example to illustrate the point. I recently reviewed a document which outlined the process that has been established for determining the best EB approach for treating autism in the U.S. One part of the document specified that “biomedical” approaches are being handled by another, similar group. As it turns out, by looking into the backgrounds of many of the individuals involved with this particular effort (the first group), this is largely a behaviorist-based movement. So we have a group of professionals with a heavy bias to one school of thought in autism treatment setting up a process to review scientific literature to determine the efficacy of various treatments. Let me ask you – do you think it likely that this particular group will agree upon a treatment, or group of treatments, that is not behaviorist in nature? And the “other” group that is being referred to – the one responsible for Biomedical EBIs – do you think it is even vaguely possible that they will end up recommending nothing? Is that even a possibility? I hope they come up with something that is appropriate, effective, and specific to autism, but I think it highly unlikely based on the current body of knowledge on the subject. Still, I fully expect they will come up with something to recommend – they have legions of healthcare providers (legitimate and otherwise) who have bills to pay, after all. Sorry if I sound a bit skeptical, but I really am concerned about this.
“I Don’t Know” Factor
Though there probably exists an official academic term for this concern I have, I will just summarize it is the “I Don’t Know” Factor. What I mean is that, in the absence of good evidence, isn’t it best to not be making recommendations? That instead it should be clearly stated that not enough evidence exists to establish Evidence-Based Interventions?
I understand that at no point do we know enough about anything to speak with absolute, unassailable authority about it. At the same time, a tangible lack of evidence (or an existing set of conflicting, inconclusive evidence) should seemingly prevent a definitive finding from being achieved.
A great example here is ABA. There are, to the best of my knowledge, hundreds of studies about the efficacy of ABA. The result of these studies is a lack of agreement in the scientific community about whether or not ABA should be defined as an EBI for autism. Forget ethical considerations for a moment and consider this: After decades of research on how ABA (in varying forms and levels of intensity) affects autistic individuals, there is still no consensus on whether or not it is an effective intervention in cases of autistic individuals. Why, then, was it the only service (aside from respite care, which we have not yet ever done) offered by the state of California for my son? Is it perhaps because at some point in the past it was recommended as the state’s official EBI? Interesting, since evidence clearly lacks. I am not sure it is appropriate for an EBI to be supported by such conflicting evidence.
Some autism advocates will say, “We need to settle on something so that parents do not miss opportunities to provide early interventions to their children.”
What if ‘something’ really means ‘the intervention that currently has the most evidence, even if that evidence suggests a very low efficacy rate’? Is it still, then, appropriate to tout ABA as the single most beneficial autism intervention? Would it not be better to say that “We cannot, based on current scientific evidence, support any one intervention, but here is a list of reviewed approaches and the associated literature.”
If one does not know the answer to a question, "I Don't Know" may be the only honest response.
Those two issues are enough for one post, but I do plan to continue my list.
Here’s a teaser for the next item on my list:
The Implications of Consequentialism
Saturday, August 4, 2007
It is a term that causes all facets of the autism community to calm down and listen: Evidence-based Interventions. It implies a sense of hope and security. “Why, if its evidence-based”, we say to ourselves as parents and professionals, “it is bound to be effective. After all, it has been proven … verified … it is evidence-based.” If I am a die-hard believer that if I “get the mercury out” then I will get my child back, then I want evidence to show me that my chosen path is the correct one. If I have a more skeptical nature and believe that science really hasn’t given us any cause yet, I certainly feel better exercising my duties by supporting my child with an intervention that provides the highest likelihood of optimal outcome. If I am somewhere in between, or have some completely different theory about autism (such as: I parent a Crystal Child), I still want to do the right thing. I want someone to filter through all of the scientific data and provide me with a roadmap for positive results. Dammit, tell me what to do so I can get it right!
Quite obviously the proper approach, the thing to do that will allow the greatest opportunity for your child’s quality of life in the long-term, is to follow whatever the prevailing scientific evidence shows is the best thing to do. Right?
Well ….. maybe.
Based on the most recent evidence released, considered alongside other evidentiary findings both collaborative and antithetical, we should no longer continue to provide ABA-type therapy to my son, Jason if we are stoic followers of the Evidence-Based approach. Oh, but we will, as we definitely feel that – despite evidence to the contrary – the behavioral intervention that Jason has undergone at varying levels of intensity since age 3 has been beneficial to him in any number of ways. But another study (more evidence!) states that ABA is not benefiting autistic children in any measurable way.
The purpose of this entry is not to call into question whether or not Evidence-Based Interventions are the correct interventions to utilize to support one’s autistic child. Instead, it is to promote a discussion on how we define Evidence-Based (hereafter referred to as EB), how we consider the effects of its application, how we ensure that it remains as undiluted a term as is possible, considering the number of scientific “camps” that will exercise territorial rights over it.
There are two things I would like to discuss up front:
First: In introducing this topic – one I feel is very important – I was directing my statements towards parents and professionals. Unlike most of my writings, I excluded autistic individuals. The reason for this is that – up until now, anyway – the views of autistic adults have not been seriously considered in determining the best “early-intervention” approaches to take. Like many others, I am interested in seeing this change, and believe that one legitimate way to start that change is to spark a change in the way autistic people are viewed within the context of this issue. Therefore, anyone who read the intro to this entry and did NOT think to themselves, “Where does the autistic viewpoint come into play here? What if the ‘evidence’ runs counter to what our adult autistic friends can tell us about a given approach?” then please consider yourself called-out. It is essential that you and I and all the scientists engaged in this dialogue put those considerations at the forefront of any decision-making process, as virtually all ethics-based decision-making processes cannot proceed without it.
Second: I have had several separate but significant events happen recently which have forced this issue to the forefront in my thinking about autism and what my son’s future might look like.
Our funding for ABA stopped due to Jason’s age. We have paid privately for most treatments for our son, and done so with the understanding that he is benefiting from them. Adding the expense of his ABA is not easy, but we of course will do so (actually, have done so for a while) without any hesitation since we believe he tangibly benefits from it.
 I recently made an acquaintance who has been able to provide me with tremendous insight on many aspects of autism. To use the term acquaintance works only in the context of a semi-formal discussion such as this. In truth, I have made a friend. This friend has provided me with some incredibly profound and deep insights on the EB issue, among others, and I am extremely happy that I have found a like-minded person with whom I can discuss these topics.
I read a very good assessment of the most recent study on the efficacy of ABA on Michelle Dawson’s blog. If one reads this analysis and also follows the trail Ms. Dawson leaves via links to other analyses, it is plain to see that a) EB is not as easy to define as one would think, and b) if I truly believe EB is the proper approach, perhaps it is time to drop ABA. As I stated above, we have no intention of ceasing Jason’s behavioral therapies – but does this them mean that I oppose EB interventions?
So, where to from here? I can think of at least 5 major topics of discussion on the issue of EB treatments/interventions. In my next few posts, I plan to review some of these issues – both positive and negative – that I see as being crucial to the welfare of autistic individuals. What I would like to do in the meantime is to invite all autism bloggers to discuss this issue - now. I have reason to believe that this discussion is urgent and timely, and that the more progress we can make on establishing a common position on this, the better off all autistic individuals will be in both the short and long term. Please join me in discussing this important issue in any and all forums.