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Science and Ethics

  • Posted on October 18, 2013 at 10:00 AM

This post is a continuation or expansion of last Friday’s post, A Scientific Link. Just because we can, doesn’t mean we should.

If you’re a consumer of science fiction, then you’re familiar with the way writers ask “what if” questions in order to explore possible consequences of scientific endeavors. To get a big dose of this, you can watch Fringe.

Basically, science is amoral—not immoral, meaning in violation of moral principles or wrong, but amoral, meaning without morality or not concerned with right or wrong. Legally, we try to assert morality into scientific endeavors by limiting what scientists are allowed to do. Individual scientists may bring their own morality to bear on their work. However, science as a discipline is amoral. It’s about curiosity and testing theories, not about whether or not something should occur.

Therefore, we can look to science to answer “how” questions, like “how does this work” or “how do we do this;” but, we cannot look to science for the answer for “what” questions, like “what should we do” and “what shouldn’t we do.”

When it comes to autism and science, we’ve reached the point where we need to focus less on “How does this work?” and “How do we do this?” Instead, I propose that the primary question we should ask is, “What should society/scientists be allowed to do to peoples’ brains?”

In scientific terms, the brain is the storehouse of memory, thought process, and other components that make up personhood, like personality and emotions. We know that people with brain injuries, stroke, and Alzheimer’s, for example, can undergo significant changes in how they express who they are, because these conditions impact their brain.

Yet, when it comes to autism and other neurological disorders, there are many people in our society who claim the right to seek a cure due to the disruptiveness of the behaviors people (i.e. children) with autism exhibit. They seem to ignore the implications of messing with a child’s brain. By curing someone of autism, for example, you will need to fundamentally change how their brain works, which involves fundamentally changing their brain, which involves fundamentally changing who they are—or, at the very least, how they are able to express who they are.

On the surface, when you’re talking about people profoundly limited by their autism, this may seem like a good thing. I know how it feels to want your child to talk. I know how it feels to want your child to be able to be “more himself,” by taking away the frustrations that make him act out. So, yeah, I get it.

At the same time, I don’t. Because the kind of cure that could impact autism isn’t going to function at the surface of things, it’s going to have a dramatic impact on a person’s brain—if it works at all. In other words, it’s not going to make a child “more himself;” it’s going to change who that child is. It’s going to change the way he (or she) processes information. It’s going to change the way he (or she) experiences the world. It’s going to change the way he (or she) thinks, and probably what he (or she) thinks about and remembers, what those thoughts and memories mean to him (or her), and who knows what else.

Basically, one of the working theories is that autism occurs because of a combination of overabundant and underabundant neural pathways. If you start to mess with those pathways, then you are going to change who the person is, just like a stroke will change who someone is or at least how he or she is able to express who his or her own personhood.

I’ve read enough about tiger moms and other dysfunctional families to know there are parents out there who would love to be able to forcibly re-write their child’s brain to make their child who they want their child to be. I don’t see the potential “cure” for autism as being any different. The question then is: Should parents (or doctors or guardians or anyone) have that right? Does society have the right to rewire someone’s brain to make them more socially acceptable?

A Scientific Link

  • Posted on October 11, 2013 at 10:00 AM

I’ve listened to many parents and many people with autism describe their experiences. I’ve listened to them describe how and when symptoms first appear. I’ve listened to them ruminate on experiences prior to the recognition of autism, noting that autism symptoms began much earlier in some cases, but not in all. I also recognized that “autism” is a label based on behavioral—i.e. psychological—observations, but evidence indicates that autism is most likely neurological in nature. I deduced that what we call “autism” is probably many different things, with different causes, different treatments, different prognoses, and different complications.

It seems I was right:

People with autism are ?regularly lumped together and treated as a single group. But the world’s largest genetic study of the condition “shows that autism is many different diseases,” says Stanley Nelson, a professor of genetics and psychiatry at UCLA who collaborated on the investigation. “That insight should greatly enlighten how we think about autism and attempt to treat it.”

As the researchers reported last July, the mutations associated with autism fall all over the map. “If 100 different kids with autism walked into a clinic,” Nelson says, “chances are they’d have 100 different genetic aberrations.”

If this doesn’t change how autism research is conducted, then perhaps this will:

  • Dr. Carla Shatz studies neuroplasticity.
  • She discovered that MHC1 is an important protein in brain plasticity.
  • This discovery was made, in part, because she didn’t “know” that MHC1 couldn’t possibly exist in the brain.
  • You see, MHC1 is typically part of our immune response. Immune responses don’t pass beyond the blood-brain barrier in healthy brains.
  • In the brain, MHC1 serves a different purpose, pruning cells as part of neuroplasticity.
  • Imprecise pruning may be a key factor leading to what we call autism.

Research also indicates a connection between immune disorders and autism, and this may be the key to that connection. This might also explain the connection between autism and schizophrenia, both of which seem to involve imprecise pruning of synapses. Dr. Shatz research may lead to the ability to exert external control on how synapses are pruned, which could help people with a range of neurological challenges, from Parkinson’s to Alzheimer’s, from autism to schizophrenia, from stroke to brain injuries.

This still leaves us with the question: How much of this should we try to do? Just because we can, doesn’t mean we should. More on this next week.

Night and Day

  • Posted on September 30, 2013 at 10:00 AM

Sleep is a peculiar thing. You’d think it would come naturally. I’m sure, for some people, it does. But not for me and not for many of the people I know.

A circadian rhythm refers to a natural, biological process attuned to the 24-hour day/night cycle of the earth. In theory, human beings sleep according to a circadian rhythm that attunes them to the day/night cycle. We sleep best at night and are most alert during the day. The night shift, of course, changed that for some. Others, myself included, faced life challenges that disrupted their circadian rhythms.

Though the boys have gotten much better at sleeping at night, not to mention sleeping long enough to get a good rest, I have found restoring my circadian rhythms much more difficult. My body tends to slide through the week.

For example, last week I was so far behind on my work and coursework, I shorted myself on sleep and tried to be awake during the nights so I could have a longer period of uninterrupted work. I was firmly entrenched in this cycle by the end of Wednesday, which had repercussions I’ll discuss in my next post. I spent the week working at odd hours, sleeping at odd hours, and my sleep was definitely not cyclic in nature.

This week I’ve committed myself to a day schedule. I spent my day of rest (Sunday), resting up from my wee-hour work day on Saturday, eschewing caffeine, and going to bed early (for me) on Sunday night. I woke refreshed this morning and ready for a full day—at least, I hope so! Yet, despite the best of intentions, I suspect I’ll slide back into an irregular schedule by the end of the week.

What’s decidedly worse is that I tend to rely on external chemicals in order to get to sleep regardless of when I do it. I take between 6 – 10 mg. of melatonin and a full-strength OTC sleeping pill (the equivalent of two Tylenol PM pills, without the acetaminophen). And that’s when I’m already quite tired and feeling “ready to sleep.” When that is insufficient, I usually add a third melatonin to push me over the edge of consciousness into sleep. Most of the time, it works. But sometimes it doesn’t. Usually, I’m up and alert after 5 – 7 hours of sleep. Only when I am unwell can I get the 8 or 9 hours people tend to claim we need.

Mark, on the other hand, will take a full-strength OTC sleeping pill on the nights he can’t sleep and sleep for 12 hours straight—and he’ll sleep hard! I find myself facilitating from envy to resentment, wondering how he can manage to stay asleep so long. Seeing that neither envy nor resentment are good qualities/emotions, I try to put off such feelings and instead embrace with gratitude his willingness to cope with my sleeping peculiarities, so that (most of the time) I can sleep when I need to regardless of the time of day.

Visualizing

  • Posted on September 27, 2013 at 10:00 AM

My children are visual people. Willy loves drawing—it’s his favorite class. Alex loves coloring, it’s his second most preferred activity (right after the Kindle). Ben loves drawing, too, especially re-creating images he saw on the Kindle.

I visualize in words. This isn’t the same kind of “visualization” other people mean. But my mind creates pictures with words.

I am currently working with a graphic artist to create tailor-made images for my website. She is also the mother of a child with special needs. It’s been an interesting experience. We’re trying to translate my visualized-as-words thinking into actual images other people can see. There’s some trial-and-error involved, both between our communications and with her trying to do something she’s never done before.

Pretty soon I’ll have the first image created from this process and I look forward to sharing it with you.

In the meantime, I was wondering how many people reading this blog are visual-thinkers and how many are word-thinkers. Or do you think primarily in another way? Share your thoughts!

Where Legislation Ends…Social Advocacy Begins

  • Posted on September 6, 2013 at 10:00 AM

I was chatting with one of my online friends (she’s in Australia) about why neither of us identify with the feminist movement, despite being personally empowered as women.

Being older than me, she grew into the person she is in a different time than I did. Being Australian, she also grew into the person she is in a different place. Therefore, she had different reasons.

My friend explained that she just never got how you can legislate an attitude. What good could their efforts do if they were focused on changing the laws?

I explained that legislation doesn’t change attitudes, but it can change behaviors. In comparison, I said that if there were not employment laws protecting the interests of employees with disabilities, then we would have even fewer people with disabilities employed. We knew this, because when we didn’t have those laws, few people with disabilities could obtain employment.

I also explained that where legislation ends, awareness and advocacy begins. In the case of feminism, when I was growing up the most prominent feminists seemed adamantly anti-male. And I couldn’t align myself with that.

There are factions within the neurodiversity movement that make the same mistake. Because they’ve been belittled and made fun of, they in turn belittle and make fun of others. Perhaps they think that if they portray “normal” as flawed, then people will be more able to see the value of being different. Perhaps they honestly believe they are superior to others.

Either way, it amounts to building oneself up at the expense of others. If this doesn’t sound familiar, it should. That’s what bullies do.

Social advocacy and social change can certainly be built using bullying tactics. Feminists have succeeded in introducing a belief in the inferiority of males into our culture. But those tactics and those beliefs don’t solve problems and they don’t create functional communities. They entrench opposite sides in conflicting beliefs, reinforcing negative stereotypes of both genders.

The irony, of course, comes with the definition of feminism that prompted my response to my friend. My friend was discussing feminism on a discussion board (I was just looking, not lurking), and a feminist defined feminism as believing in the equality of the sexes.

That may be what feminism should be, just like neurodiversity should be believing in the equality of neurological differences; but that’s not how feminism and neurodiversity are being practiced in reality. Check that. There are people who do practice that, but there are also prominent segments in both groups that practice supremacy of their disadvantaged type instead of equality of all types.

As long as self-advocates rely on bullying to achieve their goals, they will ensure there is a battle to be fought. You cannot bully others into changing their attitudes in positive ways.