Autism Review

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

"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. "

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...'

I wondered this morning how much writing I have done on various OT message boards and I started thinking that an awful lot of my opinions are probably documented all over the Internet. I visited the forums on the AOTA website and found the equivalent of over 40 single spaced pages of my writing! Then I thought it might be interesting to see what motivated me to post on professional forums this year. Here is a summary of one interesting forum conversation:

The Social Justice Debates

Early this year there was a motion to rescind part of newly adopted AOTA ethics statements; the concern was that they unnecessarily referenced social justice concepts and that the existing ethics statements already covered that conceptual material and did so without politically charged terms like 'social justice.' The new ethics documents includes:

SOCIAL JUSTICE
Principle 4. Occupational therapy personnel shall provide services in a fair and equitable manner.

Social justice, also called distributive justice, refers to the fair, equitable, and appropriate distribution of resources. The principle of social justice refers broadly to the distribution of all rights and responsibilities in society (Beauchamp & Childress, 2009). In general, the principle of social justice supports the concept of achieving justice in every aspect of society rather than merely the administration of law. The general idea is that individuals and groups should receive fair treatment and an impartial share of the benefits of society. Occupational therapy personnel have a vested interest in addressing unjust inequities that limit opportunities for participation in society (Braveman & Bass-Haugen, 2009). While opinions differ regarding the most ethical approach to addressing distribution of health care resources and reduction of health disparities, the issue of social justice continues to focus on limiting the impact of social inequality on health outcomes.

Occupational therapy personnel shall
A. Uphold the profession’s altruistic responsibilities to help ensure the common good.
B. Take responsibility for educating the public and society about the value of occupational therapy services in promoting health and wellness and reducing the impact of disease and disability.
C. Make every effort to promote activities that benefit the health status of the community.
D. Advocate for just and fair treatment for all patients, clients, employees, and colleagues, and encourage employers and colleagues to abide by the highest standards of social justice and the ethical standards set forth by the occupational therapy profession.
E. Make efforts to advocate for recipients of occupational therapy services to obtain needed services through available means.
F. Provide services that reflect an understanding of how occupational therapy service delivery can be affected by factors such as economic status, age, ethnicity, race, geography, disability, marital status, sexual orientation, gender, gender identity, religion, culture, and political affiliation.
G. Consider offering pro bono (“for the good”) or reduced-fee occupational therapy services for selected individuals when consistent with guidelines of the employer, third-party payer, and/or government agency.

My own concern was with the statements "to abide by the highest standards of social justice" and "provide services that reflect and understanding of how OT service delivery can be affected by factors such as..." Here the politically co-opted definition and political twist that is taken with the term 'social justice' was challenging because of the associated statements about distributive justice which is politically charged. Additionally, there seems to be a suggestion that there is de facto impact on service delivery because of certain issues like age, ethnicity, race, etc., and many people object to that assertion. There is no doubt that prejudices exist, but it is not correct to state that there is de facto impact.

My concern was also related to how 'social justice' was being defined in the current American political context. I tried to compare worldwide Catholic social justice definitions to American social justice definitions. Context and degree seem to be overarching factors when it comes to definitions of social justice - for example, social justice from the perspective of a person in a developing country must be very different than social justice in the United States (which has incredible wealth and where even those who are very poor have their basic needs met).

Also, a core concept of Catholic social justice is in how it is practiced - no bigger than is necessary and no smaller than is appropriate.

Anyway, what I am saying is that I understand the Catholic position of social justice because it is a world-wide religion and the concept is being applied to a very broad spectrum of human existence.

That is all very different than the way that the term is being used in the United States as a redistributive economic policy.

I don't think that the OT professions needs to avoid issues that are politically charged, but it does not seem unreasonable to have a core value of inclusiveness so that we are not disenfranchising our membership - and there were some people who were uncomfortable with including this language in the ethics documents. I don't believe it is unfair to ask the appropriate contextual question of ''What does social justice really mean in the AOTA documents' and if it is such a core concept to our ethics - then why is it just appearing now?

This really was not a new concept for people who read here - I covered this material in depth previously.

The larger issue I was driving at in the conversations was "what constitutes OT practice and how do ethics aspirations suggest us into practice areas or into practice interventions that are beyond our mainstream." In many ways that makes them beyond pragmatic use to many practitioners.

I think that people can use their OT skills in many ways - but that does not necessarily make the interventions occupational therapy - even though some people are calling it that or perhaps want it to be.

I have no objection to giving recognition or praise to efforts that further people's health and participation - even when those efforts are informed by occupational science and are not falling within the mainstream of occupational therapy practice.

My concern is that sometimes it seems like we spend a lot of time in this profession playing in the stratosphere. Lofty ideals are fun, but the atmosphere is pretty thin - and sometimes it is nice to get your feet planted back on the ground again.

I believe that we will serve our profession best if our ideals and ethical aspirations have application to the everyday concerns of practitioners. If our ideals and ethics only help us populate an academic playground to see how many different ways we can apply our concepts then I fear that we will have created a great academic discipline - but one that has very little traction in everyday practice.

As a bottom line concern, AOTA ethics documents are included in some state license laws. That means that failure to abide by generic aspirational and potentially vague language about social justice in ethics documents might cause someone to be in jeopardy with their state license. That's not so good.

I did not believe that there was a need to include ambiguous social justice terminology to maintain our consistency of belief that people who have disabilities should receive services. The proposed motion to remove the politically charged terminology rather clearly outlined that nothing is lost by removing the social justice terminology, and instead the objective is to remove ambiguity that is associated with the term.

I greatly appreciated the distinctions that were argued between political social justice and ethical social justice in those forums - but the fact remains that based on a reading of the current ethics statement and based on a reading of our literature that there has not been such a distinction made between these different iterations of social justice. In fact - the two have been blurred throughout all the conversations as well as in the literature.

It was an interesting debate. The Motion to remove the language failed. So now I will continue the 'social justice watch' to see if any of this ended up having any notable and pragmatic impact on practice.

Advance warning: this is not for the faint of heart. If you are easily offended, please move on.

I don’t want to discuss too many details because this is a sensitive situation, so I will try to focus my discussion on the issues of sociobiology, sensory processing and behavioral analysis, disability rights, and of course the carceral archipelago.

I get the most interesting referrals. A recent one was for a young adult who has mild to moderate developmental disabilities who was removed from his community vocational placement because of inappropriate sexual behavior. A psychologist had the idea that perhaps some of the behaviors were generated from a ‘sensory seeking’ type of profile so I was asked to assess this area and provide some input for the team to consider.

I would like to offer an analogy for purposes of beginning this discussion. I am not equating human and animal behavior by giving this example, but rather trying to find a means of opening a discussion on instinctive sexual activity. So, my poor dog Hunter will serve as the focus of the conversation (and I label him as such because his ‘personal’ information is about to be posted for the world to see).

Hunter has been physically castrated but he still has some instinctive sexual urges. I suppose that his adrenal glands can still produce some androgens, so the castration couldn’t have totally eliminated testosterone from his body. This could represent some hormonal contribution to his behaviors, although this would presumably be small.

Sexual activity has a social component, so it is important to consider this angle as well. We were careful to establish that humans are the alphas in the family. So although it kind of grossed out the kids, I wasn’t really surprised when one of them came running up the stairs screaming “Help! Help! Hunter is humping my stuffed panda bear!” He had to find something to dominate, I guess.

Hunter is a sensory seeking dog – just like most golden retrievers. But I don’t know that my dog has a sensory processing disorder. I also don’t know that if I put him on a sensory diet that I would be able to materially change his episodic humping of the stuffed panda bear. I stand firm in my reasoning that makes me believe that poor Hunter does not have a sensory disorder.

So how can this relate to the referral I received?

Here is where the disability rights issues enter into the equation. My jaw dropped when I read it, but the fellow I assessed receives Depo-Provera shots. It just grates at my sense of morality – this fellow can read at a 3rd or 4th grade level, communicates well, and lives in a community setting. I understand that there has to be some concern for the safety of others but is chemical castration ethical in people who have developmental disabilities? Anyway, right or wrong, hormones obviously can’t totally explain his behaviors because he has been essentially castrated but the behaviors persist.

From a sensory perspective, I don’t know that I will focus my recommendations on any kind of sensory program. I gave the Adolescent/Adult Sensory Profile but didn’t score it yet – although I wouldn’t be surprised if he has some sensory seeking tendencies. I just don’t know if there is a lot of face-validity to the notion that sensory seeking tendencies would lead to paraphilias in whatever forms. Certainly sensory stimulation is part and parcel of sexual activity but it is another leap entirely to state that people who demonstrate ‘alternate’ sexual activities are primarily driven by sensory seeking tendencies. So I am willing to consider the hypothesis, but not willing to entirely focus my recommendations that way.

If we eliminate hormones and don’t want to accept sensory explanations, we are left with the social contributions. This is where we have to discuss the carceral archipelago.

Sexuality is instinctive, and unfettered or unrepressed sexuality can be interpreted to represent a range of behaviors. Instinctive sexuality might represent a lack of inhibition such as could happen with a person who has cognitive deficits. Instinctive sexuality might also represent a total lack of a moral compass such as with a pedophile. I imagine that forensic psychologists have to cope with this issue frequently, even though there is some debate about the DSM-IV-TR diagnosis of Paraphilia. To label something as deviant is to pass a moral judgment on the activity, and it seems that a lot of psychologists are interested in avoiding a repeat of the homosexuality debate.

The System (whatever that is) decided that castration was an answer to the problem – because the System Administrators have to dance around the issues of what constitutes appropriate vs. inappropriate sexual behavior. This is an error of magnificent proportions on so many fronts. I challenge whoever provides a paraphilia diagnosis to hang out for a weekend in the dorms of a bunch of college aged men. You will see all kinds of sexual obsession and even paraphilia in a college dorm. The difference is that college aged men generally have superegos that prevent them from acting on these obsessions (please let’s not talk about lacrosse players at Duke).

It seems to me that what this fellow is missing is a filter so that he will keep his proclivities to himself. His behaviors are inappropriate but I know that his thoughts are relatively common. He just needs to unplug thought from action. Or at least be a little more discriminatory about where and how he expresses himself. He is mentally retarded and he has some other developmental disabilities. Is it a surprise that a few social filters could be missing?

So how do missing filters contribute to non-criminal sexual ‘deviance.’

Prison Systems support and reinforce homosexuality – simply because sexuality becomes an issue of opportunity and availability (and perhaps power). Group homes for people who have developmental disabilities can do the same thing. Group homes can socialize a young man who lacks filters into an environment that is primarily male. Then consider that there are limited opportunities for socializing with women. Then consider that there is a failure in providing normative opportunities for psychosexual and social development. These factors are at the root of ‘situational homosexuality’ or ‘behavioral bisexuality.’

When the target of a sexual advance is non-consensual, people don’t stop to think about the roots of the problem. Instead, the System apparently moves with lightning speed toward Depo-Provera, behavioral intervention plans, and wacky ideas like sensory diets to solve hypersexuality. We have to know better than this.

If we had a humanizing environment and system of care for people who have developmental disabilities we would not create or contribute to these problems. You can not take a young person who is developmentally disabled, place them in an institutional environment, and then expect that they will develop normally. So even though we all went along with deinstitutionalization and thought it was the best thing to do, we are finding out that the creation of mini-institutions in our communities has not solved the problem. Everyone knows it too – which is why you will see people screaming “Not in my back yard!’ at zoning board meetings across the country whenever someone tries to open up a community residence.

So a sensory diet won’t solve this problem. Neither will chemical castration. Neither will placement far away from society. The real answer lies in providing opportunities for normal development, including normal education, normal occupation, and normal socialization. Nothing could be so simple, and yet so hard for the System to provide.