The March 12 issue of Science News previews an article about to be published in Nature Neuroscience which proposes that autistic children actually experience intense emotional reactions when looking at faces, and hence avoid eye contact. In a controlled fMRI study comparing autistic children with normals, they found as expected that the autistic children averted their gaze from images of faces presented to them in the chamber, but in the event of familiar faces, or of those with obvious emotional expressions, their amygdalas registered a strong response. No such activations were observed among normals. At the same time, the brain regions associated with facial perception showed minimal activity in the autistics.

As it happens, a strikingly evocative story was just told by a home-NF-user parent of a PDD child on the autism list server:

“It is interesting how the level of awareness on a child manifests in the weirdest ways…
N has been progressively getting more aware, and the last three weeks he was angry. This is a sweetie 6-year-old boy, and the more aware he was getting, the more aggressive and angry he became… A few days ago, he walked up to me and punched me in the eye… Then he cried his eyes out, begging for forgiveness and saying over and over he did not know why he did it…

A few minutes ago….he turned to me and asked ‘You think dad does not live here anymore because you two argued too much?’ His eyes filled with tears…

I don’t know of a harder conversation to have with a child… but at the same time now I know he knew it all along, and it makes me wonder if the impression we have of a PDD child, even during his “foggiest” days really holds the assumption they are “tuned out”…
He said ‘I told you both of you to stop arguing many times!’

At least now I know where the anger is coming from. And that the awareness has always been there, even if not shown as we normally expect… It has been eight months since dad moved out, and he knew exactly what was going on…It really makes me wonder what “spaciness” and “fogginess” means in the PDD world… what you see does not seem to be what you get – at least not right away…”

This kindled another response along the same lines:
“I remember a time when my granddaughter C was five, just beginning to relate but still unable to make eye contact for more than a second—literally. I had just spent more than an hour with her alone in her room, playing with her, making up songs about her and gradually getting her to make physical contact with me. I felt something moving in her. Her parents were surprised she lasted that long. After we emerged, the whole family sat down to dinner. A few minutes later, I felt C’s gaze on me and looked up at her. We locked eyes for at least 30 seconds…It seemed like an eternity. Everyone at the table was silent with amazement. Then suddenly she covered both her eyes with her hands. The gesture was crystal clear and confirmed my intuition at the time that ASD children are actually hyper-relational rather than non-relational. In the ensuing years, evidence has mounted overwhelmingly to support this reality. C misses almost nothing. It is her ability to express what she feels and understands that is impaired.”

The conversation continues:

“When my son was three and we were at a restaurant, I was drawing something on a napkin as usual. He was playing with the crayons as well and it became a “what is it” game. Everything went fine until I drew a sad face. It wasn’t anyone’s face, just a circle, with two eyes, a nose a mouth with an upside-down smile. He reacted as if he could not bear it. It was pure desperation at someone’s sadness. He then got the crayon and made a lot of Xs on top of the sad face. To this day, if a movie starts getting sad, he leaves the room.”

Well, matters are probably more complex. But the above stories do indicate that something may have been missed in our understanding of autism. If one approaches a blind person, it does not take more than a moment to realize that one is not being engaged by the eyes. The person just stares out into space. There we have the picture of non-engagement, one which is altogether different from what we see in autism. In the latter case, we have a clear case of avoidance rather than the lack of engagement. Something must be motivating that. The obvious analogy that comes up for me is the sensory hyper-reactivity that these children can show to auditory and visual signals, or to tactile input. This may be another aspect of avoiding the intensity of sensory experience that they are unable to process benignly. So the emotional circuitry is not inert, or off-line, but rather just not organized. Ok, we knew that. It’s the Disregulation Model once again. The lighting up of the amygdala, in turn, indicates that one result of such disregulation may be the persistence of unprocessed fear responding.

On the matter of Terri Schiavo again:

The nature of consciousness at the boundary of life and death

After last week’s newsletter I had plenty of opportunity to reflect on what I was caught up in. After watching the turmoil in Washington over the weekend, I felt like the guy who ends up at the football stadium on the wrong side, among the folks rooting for the other team. Then I read that the California Medical Association voted almost unanimously to approve the disposition of this case, i.e. the removal of the feeding tube. At once I was again certain that I was not sitting in the wrong pew, or singing in the wrong choir. There were 450 people assembled at the CMA meeting (out of 90,000 MDs in California!), and there was one lone voice raised in opposition to the motion. It made me think back to the days of crusty old Wayne Morse and Ernest Gruening, the only two senators to vote against the Tonkin Gulf Resolution. It takes real courage to stand alone in communities bent on hegemony and honed in the skills of shaming deviants.

The doctors here assembled knew no more than what they had read in the papers, just like the rest of us. What happened was essentially the expression of a need to stand in solidarity with their fellow doctors, to make up with unanimity what is lacking in certainty. The issue was not Schiavo per se, but the threat to the authority of Medicine.

On the legal side, as well, the issue is much larger than Terri Schiavo. It is understandable that Judges would be most keen on preserving the integrity of the judicial process. As matters move into the appellate regime, they are going to be increasingly driven by issues of process rather than of fact. At least weight will be given to facts already in evidence, already adjudicated, rather than purported new “facts.” Judges also must accept those who are presented to them as authority figures on technical matters. So everyone is sticking to the script so far, and it is too late for even an error of fact to have an impact. But it is not too late for us to discuss these issues of fact. There is just far too much claimed certainty about in a field where everyone should tread with more humility.

It is being said, for example, that spontaneous recovery from persistent vegetative state has not been observed after a couple of years. This neglects the case of Terry Wallis just a couple of years ago. He woke up after 19 years, still thinking that Reagan was President. His memory had been preserved over all that time. He was declared to have been in a state of “minimal consciousness,” but that designation was made retrospectively. No one had predicted that he might recover, or that he had the capacity for recovery. Until he did recover, he was declared to be in a persistent vegetative state, just like Terri Schiavo.

And as I alluded to last week, new research is leading to some surprising insights into people who are in non-responsive states. Clive Thompson wrote in Slate a few weeks ago:

“This week, Neurology published an unsettling study of two brain-
damaged men who are “minimally conscious”–able to breathe on their
own but otherwise generally unresponsive. When neuroscientists
scanned the patients’ brains as they played audiotapes of loved ones,
the activity was strikingly normal. The visual cortex of one of the
men even lit up in a way that suggested he was visualizing the
stories that his relatives told. One of the researchers told the New
York Times that they’ve repeated the experiment on seven more
patients and found the same results.”

By now, the Neurology article referred to is probably available, but even this description makes the point. The results were unsettling because they were so surprising. There was more going on than anyone thought. What is amazing in all of this is the persistence of surprise. Every “spontaneous recovery” from coma or persistent vegetative state surprises, in the sense that it was not predicted. And every induced recovery from coma, such as by Margaret Ayers, is in turn dismissed as spontaneous. Where is the learning curve in all of this, for crying out loud? In a state of almost willful inattention to data, we persist in the prediction that recovery is impossible.

How familiar that is to us in neurofeedback! It was also said about traumatic brain injury and stroke and Alzheimer’s and Parkinson’s and Bipolar Disorder and PTSD and alcoholism and crack addiction and chronic pain and bulimia and…. The list goes on. At our last advanced training course, someone asked Sue about the extent of her base of experience. She said it was well over 2000 cases. Yet the number of therapists and doctors who at their own initiative expressed an interest in the remarkable progress being made by their patients remains quite small.

We have already known from the Birbaumer work with locked-in patients that these people actually have a satisfactory quality of life, provided that they are able to communicate with the outside world, which the brain-computer interface is allowing them to do. The perceived quality of life persists despite the fact that these locked-in patients are given no great hope of recovery. Presumably they accept their state, and are not simply pining for a miracle.

This takes us to another aspect of the discussion about Terri Schiavo. There is an almost implicit understanding that the salient issue wraps around the capacity for recovery. Agreement is assumed on the proposition that her current status is not worthwhile, and that she is therefore better off dead. Only if there is hope for better should we even be discussing keeping her alive.

It is on this very point that the imaging data from the Neurology paper and the findings on locked-in patients can be helpful. Not only should we practice humility when it comes to predicting recovery capability, but we should be equally “agnostic” with respect to claims about what is going on in these compromised nervous systems. We are just beginning to tackle the matter of consciousness, but we seem to be quite prepared to assert that these people don’t have it.

Again, history is not on their side. Were “they” not in denial about chronic pain, and PMS, and fibromyalgia, and chronic fatigue syndrome, for lo these many years? Were scientists not in major conflict on the matter of whether animals had emotions, even with brains intact? Are the doctors who now assert that Terri Schiavo cannot be in pain not the same ones who told us that infants do not feel pain? It is not a big step from here to be in denial about consciousness itself.

During our visit with Sherene McGee last week, we discussed this issue, and she related that as a nurse she had often been required to tend to people in coma. On one occasion, she wanted to give pain medication to such a person for his broken leg. Other nurses tried to discourage her: “He’s in a coma. He can’t feel anything.” When he came out of the coma later he asked for the nurse that had been telling him all those bad jokes, and had given him the pain medication. Sherene had talked to him as she was tending to him just as she would have to any other patient.

We also know of reports from people coming out of general anesthesia. They can recall verbatim the conversations that were held by surgeons over their apparently absent selves. They may even recall out-of-body experiences. It is commonplace now to monitor the EEG to confirm depth of anesthesia. If one were to look at the EEG under such circumstances, one would not think it possible for such mental activity to be going on…. (Come to think of it, aren’t all of these responses of a piece with the trauma response? Acute memory for the event, and dissociative states?)

As a society we have come to decide that mentally retarded people should not be put on death row. We judge that chimpanzees and gorillas match up perhaps to four-year-old humans in terms of cognitive sophistication. We apply a yardstick that appeals to us the rule-makers, on a dimension where we ourselves stand out—the cognitive, rational, logical self. And now we apply that standard to the “diminished self” of Terri Schiavo as well. We implicitly assert that the life that lacks cognitive ability is not worth living. It is “life unworthy of life.”

A final argument comes for me from the latest book by Elmer Green, the Ozawkie Book of the Dead. Its subtitle is “Alzheimer’s isn’t what you think it is.” The book relates the story of Elmer and Alyce Green during the final years of her life as she was succumbing to Alzheimer’s. It is impossible to do this three-volume book justice in a paragraph or two. Let it just be said that while Alyce’s brain was ravaged by Alzheimer’s, Elmer was in full communication with her at another level. These were two-way conversations, not Elmer’s mere imaginings.

Terri Schiavo’s parents want their daughter just the way she is. They might hope for recovery, but they are surely not counting on it. She is their daughter, and we as a society should not be the agency that starves her to death before their eyes because of mere medical opinion—particularly not medical opinion on matters so murky as capacity for recovery, consciousness, and quality of life.

There is, finally, the issue of whether Terri Schiavo gave a directive not to be kept alive under such circumstances of dependency, and whether such a directive should be honored. The society should provide for the option of “death with dignity.” And had Terri Schiavo left documentary evidence of her wishes, those would undoubtedly now be respected. I observe simply that if Terri Schiavo is not in a state of suffering or even of awareness of her own state, as is alleged, then she is also not being disadvantaged for being kept alive. This is in stark in contrast to the manifest suffering of her parents. Would Terri Schiavo, observing her own state, not be mindful of her parents’ suffering? And how likely is it that she would accept the continuing guardianship of a husband that has since taken on another wife? Not as I understand human nature.

Rather than dwell on the specifics of this case, however, I would rather deal with this issue in the abstract and point out that most people will act to maintain life under the most adverse and hopeless of circumstances–as for example under extreme torture, or in concentration camps, or in Darfur. Witnessing such survivals under the most abject circumstances manifests a desire to sustain life that is difficult to picture or even to comprehend in the abstract. Had these same people been asked in advance about their reactions under such circumstances, I don’t believe the answers would have predicted their actual behavior. In the bloom of youth, one cannot imagine oneself signing up for a future of suffering, for living under constrained circumstances. But when the choice comes, people almost invariably do choose life. Matters may be very different with the approach of the end of life, when choices clarify for people, and when the consequences of their decisions are immediate and not far off.

So now we come full circle. We finally have reason to think that autistic children may have a richer emotional life than we once thought possible. We have not tended to the evidence that was available. Those who have spent their lives with chimpanzees in realistic settings tell us that chimpanzees have as complex emotional capacities as we do. They are not four-year-olds in the emotional realm. Evidence from Elmer Green and others shows us that a fully aware, sentient self may still reside in the body constrained by Alzheimer’s. And if even people under anesthesia give evidence of awareness of their environment, can we still claim to understand the full dimensions of consciousness? Can we assert with any confidence at all that Terri Schiavo does not have it? And if we cannot, should the state be complicit in her death? The terms of debate give us away. We say that Terri Schiavo is no more aware than a vegetable now, and has no more hope of recovering human function than a tomato. Hence withholding food and water has no more moral import than failing to water the garden. If we cannot be sure of this, however, then our bias should be in favor of life.

Some 6700 people die in the United States every day. One can easily assume that three-quarters of this number die under some kind of medical care. It is said that 75% of those die “negotiated deaths,” consequent to the withdrawal of intensive care or even of food and water. This would mean that possibly 50% of all deaths occur under circumstances that place them in ethically murky terrain. But at least this usually involves some kind of consensus among family members and medical staff, and typically does not depend upon the imprimatur of the state.

It is likely that many elderly decide to exit this world “voluntarily” because they do not want to fall burden to their families. It could even be a significant fraction of the total death rate. This is the ultimate irony around the pageantry in Washington, where an ethically challenged Tom DeLay is undergoing a baptism of purification with Terri Schiavo. While the family values side is thus engaged, the Darwinian side moves relentlessly forward to make voluntary death the operative anti-poverty program for the elderly and the disabled. The systematic denial of care that we have witnessed as neurofeedback practitioners makes this only too apparent.

I have heard of evidence from the Netherlands, where euthanasia is legal, of perhaps excessive zeal in seeing the useless elderly dispatched. We have even witnessed this trend in our own family, when a directive not to use heroic measures to either maintain or to resuscitate was taken to mean that the person had made their peace and no longer required medical care–in this case for a remediable infection. The person was treated as if already programmed for death. Fortunately, things were turned around in time when a family member apprehended what was afoot. It is now five years later, and the person at issue is still doing fine.

The former Colorado governor Lamm on numerous occasions verbalized that the elderly should voluntarily collaborate in the solving of this problem by exiting this world in a timely manner. The Eskimos have such a nice way of handling this. At the appointed time, the elder just goes out on an ice floe and freezes to death. This may come to be called “elder cleansing.”

This is a society that knows how to cut its losses. The hubbub around Social Security makes this clear, since that is a relative non-issue, and we already know that Medicare is the real looming problem. The restoration of full social Darwinism, and of Hobbesian “nature raw in tooth and claw” is to be emplaced as a model with Social Security. The successful deconstruction of Social Security then serves as a stalking horse for Medicare.

A few years ago some California gray whales got caught in ice in waters off Canada, and some Russian trawlers came to their rescue to great fanfare and world-wide attention. Years later we are told by the Pew Memorial Trust that numerous major fish populations have been reduced to some ten percent of their former incidence through over-fishing, interference with the food chain, and habitat destruction, with much of the over-fishing attributable to huge Russian factory ships. Pageantry carried the day then. Pageantry carries the day now. Only now it is we who are at issue, not just the fish.

Living as we are with a worldview increasingly informed by science, we are moved to quantify the particulars, which allows us to weigh life incrementally. Its value is seen as the sum of its useful parts. But we keep being surprised. The reality always appears to be much bigger than we thought. Another perspective keeps intruding. There is ultimately a kind of unitary quality to life, rendered poignantly apparent by the irreversibility of the boundary between life and death. Albert Schweitzer embodied the ethical imperative that follows from this as a general obligation for mankind to maintain “Reverence for Life.”

This entry was posted on Thursday, March 24th, 2005 at 6:10 pm and is filed under Autism. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.