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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.

MRI: Round Two

  • Posted on April 17, 2013 at 10:00 AM

So, after the neurologist giving Alex a clean (neurological) bill of health, he called us back in for another MRI. My husband took the call and didn’t ask the questions I would have asked, like why the sudden change in the doctor’s decision.

I know the MRI technology that is available to this neurologist is superior to the MRI technology available a few years ago at previous facility. I know that the people who ordered that first MRI weren’t looking for the same things this doctor is looking for. I know they didn’t have quite the fascination with my family’s medical history that this doctor does.

But, of all of this, what is the purpose of the new MRI? Did the doctor take a closer look at the old MRI and see something, but not see it well enough to be sure? Did the EEG results raise a question that an MRI might resolve, something that came up after the appointment? Is it for the doctor’s research?

I don’t know. I’m not particularly worried, but I dislike not knowing. What is he looking for? What will it mean if he finds it? Will this test actually change anything for Alex?

I’ve agreed to the testing and we will follow through, yet I can’t help but wonder if it’s worth putting Alex through this again.

At a time like this, I can’t help but empathize with those parents who are willing to try anything and everything to “help” their child. Granted, I’m not doing that—an MRI is a safe procedure with solid scientific evidence backing it up. Yet, I understand and appreciate the feelings that lead to those choices, even if I don’t agree with the choices themselves, especially when it involves pursuing treatments with little or no safety information or treatments that are purported to “normalize” a child with autism, i.e. to “cure” autism.

Still, Alex is a complicated child and he’s having a rough time. We need answers if we are to help him, and we’re short on answers. I hope this MRI provides some of those answers, or perhaps leads to something else that might provide answers.

Feeding Issues: What Do You Want to Know?

  • Posted on December 12, 2011 at 8:00 AM

When Alex was first “threatened” with failure to thrive, I looked for information outside the clinical setting. At first, I didn’t find anything that could help me with Alex. Sure, there was generic information geared towards the needs of infants, but Alex was not an infant and sensory aversions weren’t even mentioned in the articles or database entries I could find. I was surprised and disappointed, to say the least.

Furthermore, my research about autism and diet or autism and feeding would often turn up results that I had no interest in. I’m referring to GF/CF diets, herbal supplements and the like, all claiming to alleviate or cure autism to one degree or another. Now, I readily admit we tried the GF/CF diet, which turned out to be a good way to starve our kids. (Not that we let it go that far.) After all, the reason that Alex was on the verge of failure to thrive was because he’s very stubborn about what he will and will not eat; and bread that is GF/CF is not, to Alex’s mind, actually food. (Honestly, I’d have to agree with him on that.)

Later, I stumbled across some information, but it was written by researchers for researchers or medical professionals, not for parents. Occasionally I’d stumble across a pertinent article, but rarely did it offer anything new or insightful.

Now, Alex and Ben are both doing well. They’re gaining weight. Both of them actually have a visible layer of fat around their muscles! As much as obesity is a problem in this country (and a personal problem, in my case), fat on my kids is good. They’ve got plenty of energy, which wasn’t really a problem for Ben, but it used to be a problem for Alex. They’re both expanding their diets and getting the nutrients they might otherwise lack through prescriptions of PediaSure. In short, they’re thriving.

It’s been a long road and now that we’ve traveled so far, I’m hoping to gather information from reputable sources and create a guide for others to use, the kind of guide I wish I’d had.

Along those lines: Do you have experiences with feeding issues? Would you like to share them? What questions would you like answered? Let me know in the comments or contact me directly.

Maternal Stress

  • Posted on November 13, 2009 at 11:53 AM

According to a news brief: “the daily physiological and psychological toll on mothers of adolescents and adults with autism is documented, revealing patterns of chronic stress, fatigue, work interruptions and a significantly greater investment of time in caregiving than mothers of children without disabilities.”  The study cited revealed “physiological residue of daily stress” in the form of significantly lower cortisol levels.  According to this brief of the study results, the primary distinction they looked for within the population of mothers with autistic children was “a history of elevated behavior problems.”

While I certainly recognize why this distinction would be appropriate from a research stand-point, I propose an equally important distinction would be to consider parental response.  After all, behavioral patterns of the children are not within the parent’s control, but the behavioral response of the mother is within her own control.  The news brief concluded with this statement from researcher, Leann Smith: “We need to find more ways to be supportive of these families.”  I do not disagree, but perhaps there is something more immediate that parents themselves can do for their own health and well-being.

See I have a hypothesis: mothers who accept autism will have more healthy stress levels and less stress-related health risks than mothers who are constantly fighting against autism.

The key thing for me is this:  “Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress,” (emphasis added).  Considering that many mothers who are traumatized by their child’s autism use language similar to that used in warfare – like “fighting” and “battle” – is it really surprising that they would have profiles similar to combat soldiers?  They are combat soldiers—they are waging a war against autism.  Think of the “I Am Autism” video.  That video used the language of war, not unlike the language used when describing terrorism that happens in one’s home country.

As parents, we can choose to bring stress upon ourselves by waging a war against autism, embracing the psychological risk-factors of a soldier’s lifestyle in the process.  Or, we can choose to be parents, not soldiers, and simply raise our children.  Personally, I believe the latter is the better choice, for our own sake and for the sake of our children.  I hope they continue this line of research and add other factors to see how parental responses to autism affect the outcomes for those parents.