Saturday, March 10, 2012

Why I support DSM-V criteria to make autism diagnosis more difficult.

Be patient as you read, please - and in advance I ask forbearance from autism advocates for use of this issue to make a point.

The Diagnostic and Statistical Manual is undergoing another revision and there are changes suggested that would effectively make the diagnosis of autism a little more specific. There has been a lot of popular reporting about the unintended consequences of 'tightening up' the diagnostic criteria. Specifically, many people are legitimately concerned that it will make fewer people who really need help eligible to receive services because they no longer meet the criteria for the diagnosis.

I have had concerns about this problem because I know people who would probably be negatively impacted by no longer meeting diagnostic criteria. However, after some additional thought, I decided that this was the correct time to take a different stand and support the DSM-V changes.

What prompted my change of heart? Let me walk you through the process.

Kent Tigges was my mentor and he introduced me to the concept of 'cardinal principles' in occupational therapy. I am not entirely sure where he first came up with the idea to explore 'cardinal principles;' I recall that we were furiously studying occupational behavior models and we thoroughly enjoyed Kitty Reed's book that laid out assumptions and concepts of different models. Perhaps he was driven by Dunton's idea of 'cardinal rules.' In any event we explored the concept in depth and in years following those initial discussions I adopted a 'cardinal principle' of my own after I heard a colleague make a value judgement about whether or not we should expend resources on people who (at that time) were living in developmental centers. My personal first cardinal principle can be summarized as:

Above all else, human life is valuable in all of its forms, and under every circumstance must be held in the highest regard.

Occupational therapists work with people who are in all different kinds of situations, and I found that this cardinal principle laid down a moral premise that supported all the efforts of people who were finding, developing, and cultivating meaning in their own lives. Sometimes that extended to parents and caregivers as well. It was a potent philosophical position that served many purposes to me as a professional. It provided me with justification when I was advocating for services. It also reminded me of the awesome responsibility I committed myself to when I accepted my role as an occupational therapist.

What is a life and what needs to be valued? How do we balance our value with pragmatism? Or is there no such issue of pragmatism if we are valuing life 'in all of its forms and under every circumstance.' This is a difficult question.

The case of Nancy Cruzan was being argued early in my professional career. It was a tragic situation and I don't know what the correct answer to this situation was - but in the end the US Supreme Court found that the State had to have the highest levels of evidence before they could sanction withdrawal of life-sustaining treatments for someone who was in a 'persistent vegetative state.' That led to a large social and cultural awareness of the concept of advance directives. I have no idea if the court was correct or incorrect with this individual case, but what caught my attention at the time was the opinion of Justice Stevens who wrote

"Nancy Cruzan is obviously "alive" in a physiological sense. But for patients like Nancy Cruzan, who have no consciousness and no chance of recovery, there is a serious question as to whether the mere persistence of their bodies is "life" as that word is commonly understood, or as it is used in both the Constitution and the Declaration of Independence. "

This is a chilling opinion that has bothered me for years. Stevens argued that the state had no compelling interest in preserving life - and went so far as to make value judgements about the worth of a life.

Our society revisited this debate in 2005 with Terri Schiavo. The slippery slope of Justice Steven's opinion was in full view and again there was a debate of what the State's compelling interest was. In this situation some argued that Terri Schiavo was not in a persistent vegetative state. Perhaps more importantly there was again conflicting information about her wishes and who would be responsible for making proxy care decisions.

I don't pretend to know what the correct course was in either of these cases. The point in referencing them is to highlight the cultural debate about life, and when it should be protected, and who is responsible for making decisions. In general I felt that my cardinal principle worked, because if nothing else the decision and action to hold life in the highest regard prevents the State from hasty decisions that can have disastrous and deadly consequences. Ultimately, all kinds of final decisions might be made - but at a core I believe that high regard for life is a preferable cultural value as opposed to a low regard for life.

The debate came home to occupational therapy in 2008 when Dr. Jane Sorenson wrote an opinion piece in an OT magazine where she argued for resource allocation decisions to be made upon the basis of what human potential was possible given 'the reality of a diagnosis.' To me this was a chilling reference to Justice Stevens' opinion and I wrote blog entries about it here and here. AOTA weighed into the conversation when Dr. Moyers wrote to the editor of the OT magazine; it was good to see AOTA take this kind of a stand.

Like all controversies do, all this died down but in the last couple months the debate about value of life seems to be coming up again in our culture. An article recently appeared in the British Journal of Medical Ethics that argued babies have no moral relevance because they can't make determinations about the value of their own lives. We also have the slickly marketed MaterniT21, which is little more than grease for the wheels of the Down Syndrome abortion industry. Fresh on the heels of the release of the MaterniT21 we have the case of Kalanit Levy, whose parents have openly stated they would have aborted her if they knew she had Down Syndrome. Perhaps they think that their $3 million dollar 'wrongful birth' lawsuit against the lab that did their prenatal testing will set their world aright. I am shocked at the concept of 'wrongful birth.' What will happen if Kalanit is provided the supports so that she is able to learn how to read about how her parents wanted her aborted and how she is compared against her oldest brother who "is a competitive chess player and has placed in the 99th percentile on standardized tests." Wow.

So we have some important cultural debates going on regarding life, the value of life, and who determines the value of life. We see doctors and ethicists advocating for the moral irrelevance of infants, we have slickly marketed Down Syndrome prenatal tests being covered as 'preventive care,' and we have parents suing for 'wrongful birth' of their children. All of this follows a slow cultural slide out of the confusion of cases like Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. In OT we have even heard about witholding services from children who won't make progress based on the 'reality of their diagnosis.'

This is why I support the DSM-V criteria to make autism diagnosis more difficult. Now is NOT the time to want a diagnosis of a developmental disability. Watch out for ethicists, doctors, testing companies that are more interested in profits than moral debates, and a misguided populace that doesn't know which way to turn anymore. Our society is creating this disaster right in front of our eyes.

By my reasoning, at the rate of our current cultural delay, fewer diagnosed cases of autism might actually save lives. The community of people who have autism might go underground for a while and stay safe, at least until we can smack some collective sense into the skulls of this society that is not making sane value determinations.

As for me, I will hold onto my cardinal principle, because it provides a clarity that serves me everyday and gives me hope and reason to serve my purpose as an occupational therapist for all people - including the ones that some people are now considering inconvenient or a resource drain.

There is great risk in taking stands and writing opinions. There is even greater risk in case of being accused of reductio ad Hitlerum - but I take the risk and ask people to remember Martin Niemoller and his poem 'First they came...'


Barbara said...

Your cardinal rule suits me just fine, too. Thank you, Chris, for phrasing what I believe so well.

I also agree that public understanding is sliding away from our cardinal rule.

I am especially affected by people who spend time and money and effort in a media-pushed message about using one word in an insulting manner who at the same time are silent on the slaughter of the population who it affects most. Have you noticed - the rare child w/ Down syndrome in preschools now? Wasn't that way we first started to practice - 2-3 per classroom.

As for the DSMV changes, I don't disagree with your reasoning, but have offered a few comments about how I think fear of the changes are whipped-up unnecessarily. I believe this train is coming and cannot be stopped by petitions.

Candida Abrahamson said...

Actually, despite your trepdiation indicated in your title, I think you're just fine. You make good, well-thought-out points. There is a problem in that sometimes it's 'not ok' to have certain opinions that go against the mainstream--I appreciate that you took a stand that was ddifferent.

Anonymous said...

I agree that the criteria should be tighter...if a parent tries hard enough, they can eventually find a doctor to give a diagnosis based on current criteria. It's subject to interpretation and far too broad. Hell, I like video games, am socially awkward around pretty girls I like, and got childhood vaccinations. So I guess that puts me on the spectrum too!