posted
Interesting report pins the blame on body's metabolism of fatty acids. This sure seems like it's a fruitful avenue of investigation to me. I bet the whole obesity and type 2 diabetes epidemic is something in this neighborhood as well. It's inflammatory, and it's metabolic. This is really exciting to me!
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posted
I'm interested in seeing how this plays out. Thanks for the link.
Of note, there is a very vocal minority (I think still a minority) of persons with autism spectrum disorders and members of the families of such persons who are determinedly against a cure. They (again, I think) consider it to be a basic part of their own or their loved one's identity, and they don't want that identity extinguished.
This seems to carry more intuitive weight if it is a genetic issue. I wonder if finding an environmental cause would prompt any changes in that perspective.
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posted
Even if such treatments just alleviate the symptoms of autism this would be spectacular.
I was confused by one thing though, Is the report saying that the metabolic issues are the actual cause of autism as well as the health issues that autistic individuals often experience? Or is it saying that the metabolic issues can be an indicator of the presence of autism; that the symptoms of autism and the metabolic issues are two symptoms from a common source?
posted
calaban, I think the article implied that they don't know which is the case, but are guessing the former.
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quote: Researchers say that in the future a person's risk for autism could be measured with a simple urine test that would look for high levels of "bad" fat molecules, or a blood test that could reveal genetic problems, including the absence of a key gene, called GSTM1
It also looks like this can also indicate a definitive test for diagnosing borderline cases.
Also, does any one else think that the theraputic cocktail of fatty acids curing autism seems bit like a House episode? Posts: 686 | Registered: Sep 2001
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posted
Actually, I think it sounds like known treatments for several genetic disorders -- like Lorenzo's Oil.
Posts: 32919 | Registered: Mar 2003
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posted
Putting aside the issue of the desirability of "cure," I think there's a more important and mostly overlooked issue.
The brain is an incredibly complex and interconnected system. Whatever thing or things develop differently in the brain of autistic persons don't operate in isolation. There's evidence in both autism and in brain injured people that the brain will reorganize itself and work in radically different ways than originally designed in its efforts to make up for the injury and/or defect.
What does this mean in terms of "cure"? To me, it means that if a single element or managable set of them can be isolated, a "cure" can only operate as such if it happens fairly early in the process.
I don't see any way - given the plasticity and compensatory mechanisms that have probably developed in the brain - that you can "flick a switch" and have a suddenly "normal" adult/adolescent/older child with autism.
It's not just limited to autism, btw. The criticisms of Christopher Reeve were simplified in the press. Most people are supportive of research that will soften the degree of disability in all kinds of disabilities. But Christopher Reeve wasn't talking about research giving him more sensation and movement - he was talking about it giving him the ability to walk again. Given the realities of muscle atrophy and loss of bone mass (not to mention lots of other barriers) that is and was fantasy.
Posts: 4344 | Registered: Mar 2003
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quote:Of note, there is a very vocal minority (I think still a minority) of persons with autism spectrum disorders and members of the families of such persons who are determinedly against a cure. They (again, I think) consider it to be a basic part of their own or their loved one's identity, and they don't want that identity extinguished.
This seems to carry more intuitive weight if it is a genetic issue.
Hmmm. See, it would make LESS sense to me if it turns out to be a genetic metabolic disorder, to me.
When I was growing up, my mom worked Newborn Screening (well, after she left Genetics at County, that is.) There are, today, very few untreated or under-treated cases of PKU and congenital hypothyroidism in this country, because we have almost universal newborn screening for them. But we know the effects of not treating these conditions (ever heard someone called a "cretin"? That's from a term for people with untreated congenital hypothyroidism. People with untreated PKU, if they survive, are severely mentally retarded and have an odd, stiff gait. These are serious problems that result in them not being able to function in society.) I have never heard of a parent who didn't want to treat one of these conditions (or any of the conditions that might be harder to detect because they are not commonly screened for in most states, like MSUD) when their child was diagnosed, because "it is part of his nature and we don't want to change that." (I've heard several cases of religious parents opposed to all medical treatment for religious reasons, but that's not the same thing.) So it kind of boggles me that someone would not want to treat a genetic metabolic disorder, if that's what it turned out to be, in their child because "it's part of who he is."
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part of the controversy arises from the high degree of variability of autistic traits within families in which it seems to run. In one given family, you might have a member or two "severely" affected and others whose traits actually have served them well in both their personal and professional lives. How do you separate those out? In other words - in the haste to "cure" the one will we eradicate a valuable part of human diversity as well? (although one could argue that both are valuable parts of human diversity)
And in a hypothetical cause found for that one familiy, it's likely to be only one of many genetic/environmental interactions leading to this thing we call "autism."
Autism really isn't an "it" - it's a "them."
I should also note that there are people with aspergers syndrome *and* some pretty "severely" affected people with autism who say that our labels of what constitutes "severe" vs. "mild" are both arbitrary and debatable.
Posts: 4344 | Registered: Mar 2003
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My own history is somewhat analagous to that of PKU. I developed hydrocephalus within my first few months as a result of birth-related injuries.
Left untreated, hydrocephalus will result in progressive physical and cognitive disability - and probably an early death.
So I have this tube in my head that was inserted through the right side of my brain and goes into the ventricles - it drains fluid from the brain down into a chamber in my heart (on a minor note, I have had some concerns of late that the surgeons who did this weren't thinking about the long-term implications of having a tube in this location - there are a few disturbing case studies I've come across).
So - further disability was halted and I've gotten to live a pretty long and enjoyable life by the most important standards I know - my own.
It doesn't mean that I don't have disabilities. One of the minor idiosyncracies of being me is that all images outside of my central field of vision are doubled. I mentioned this to my neurologist - it's doubtful the cause is a garden variety one, but nevertheless he suggested that it might be "fixed" with corrective lenses.
Maybe.
But....
Here's the thing. While it's weird that I have doubled vision, it's understandable with my two eyes open. But when I close one eye and hold a finger out on the periphery of my vision...
There are two of them.
Which is impossible, since there is only one eye sending images to my brain.
My theory is that my brain has 51 years of experience in *expecting* to see two images in that location.
So - if my vision was "fixed" would my brain recognize the fact or just compensate and give me the visual images that are "normal" for me?
Posts: 4344 | Registered: Mar 2003
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posted
Well if we are to believe a certain video linked on these forums a few weeks ago, there are people who have autism that don't think there is anything wrong with being such.
If autism could be reversed or even prevented would we be justified in doing so?
Posts: 14316 | Registered: Jul 2005
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quote:Originally posted by sndrake: I don't see any way - given the plasticity and compensatory mechanisms that have probably developed in the brain - that you can "flick a switch" and have a suddenly "normal" adult/adolescent/older child with autism.
It's not just limited to autism, btw. The criticisms of Christopher Reeve were simplified in the press. Most people are supportive of research that will soften the degree of disability in all kinds of disabilities. But Christopher Reeve wasn't talking about research giving him more sensation and movement - he was talking about it giving him the ability to walk again. Given the realities of muscle atrophy and loss of bone mass (not to mention lots of other barriers) that is and was fantasy.
I think this is absolutely true. And as you say, not well understood by most (lay)people. Nonetheless, I think that curing -- preventing is probably a better term -- autism, to whatever degree is possible, is a good thing.
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quote:part of the controversy arises from the high degree of variability of autistic traits within families in which it seems to run.
This, I can understand. And it also, to me, points away from an EXCLUSIVE metabolic cause.
But what if, by treating the hypothetical metabolic cause/factor, we could alleviate some of the problems while preserving some of the "desirable" traits? It seems to me that that would make things all cloudy again-- and also that we don't know what will really happen until a cause and a treatment for any of a variable number of causes are found.
In the hypothetical, though, where it is entirely or mostly caused by a metabolic disorder, I think it might change people's thinking on the subject drastically.
When people thought mental illness was caused by evil spirits, people with mental illness got stoned. Now most people know something about where mental illness comes from and would never dream of doing that. I know it's not analogous, but it just comes to mind as a dramatic shift in thinking about a medical condition.
Posts: 21182 | Registered: Sep 2004
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thanks. It's good to see you too. I started posting mostly in fluff threads awhile back but can't seem to help myself when threads like this and the Ashley thing come up.
quote:part of the controversy arises from the high degree of variability of autistic traits within families in which it seems to run.
This, I can understand. And it also, to me, points away from an EXCLUSIVE metabolic cause.
Given the extreme degree of variability of symptoms among some people with genetic metabolic disorders (Gaucher's comes to mind), I am not convinced that a metabolic disorder could not be the primary cause (possibly several related disorders -- there are a lot of critical fatty acids involved in nervous system development and functioning).
Posts: 32919 | Registered: Mar 2003
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posted
But several related disorders wouldn't be one cause, although I can see what you mean.
I do think a lot of it may be other factors and/or environmental triggers, though, from what I have seen in my own family and in a friends' (both of us have high rates of autistic tendencies/autistic spectrum disorders in the family.)
Posts: 21182 | Registered: Sep 2004
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quote:Originally posted by ketchupqueen: But several related disorders wouldn't be one cause, although I can see what you mean.
Medically they might be classed as such.
quote:Originally posted by ketchupqueen: I do think a lot of it may be other factors and/or environmental triggers, though
Oh, most probably. More and more genetic disorders are being found to be affected by environment -- this spectrum disorder seems a prime candidate.
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posted
Stephen, I'd like to echo Jim-me. I've learned a lot from you, and I am very grateful for you being here.
Posts: 2849 | Registered: Feb 2002
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posted
I can always understand when people old enough to have a firm sense of identity don't want to mess with it. I have plenty of flaws I'd just as soon keep because they're part of who I am, and I wouldn't know who to be without them. So I can understand people not wanting to "fix" autism in older children up to adults.
But I don't get why anyone wouldn't treat it in small children. Why not make your child's quality of life better before they get used to whatever their difference is?
And sndrake, I like having you here, too. You always bring such interesting points to these discussion. They wouldn't be the same without you.
Posts: 2283 | Registered: Dec 2003
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posted
This is probably dealing with Asperger's Syndrome, given the mechanism described. While it is popularly conflated with autism, Aspberger's is quite different and in many ways virturally the opposite.
Posts: 763 | Registered: Aug 1999
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quote:Originally posted by AvidReader: And sndrake, I like having you here, too. You always bring such interesting points to these discussion. They wouldn't be the same without you.
posted
Well, I want to say to you all that the conversations on these kinds of topics are much more thoughtful and nuanced than I generally encounter and I value the discussions. (Especially after having to spend about an hour this morning on a "drive-by" radio station in Seattle being tag-teamed by two broadcasters about the "Ashley case." I came very close to uttering on-air profanity. Seriously.)
Anyway, I just found out about a show tonight that should be of interest to people who have been following this thread. The Anderson Cooper Show tonight will feature a segment of Sanjay Gupta's - talking with and about Amanda Baggs. I've referenced her blog more than once here.
quote: Last week, I met a remarkable woman. Amanda Baggs is 26, super-intelligent and witty. She lives in Burlington Vermont, on a beautiful lake and is very skilled at shooting and editing videos. In fact, it was one of her videos on YouTube that caught the attention of CNN. I had met her only through e-mails and the Internet. I'd be telling you a very different story. But I was able to visit her in person.
Despite the friendly invitations and our lively e-mail banter, Amanda would not look at me when I walked in the room. She wore sunglasses and sat in a wheelchair, even though her legs are fine. She could make some noises, but could not speak. Amanda has what doctors call low-functioning autism. If it were not for a device that synthesizes words as she types on a keyboard, we would not have been able to communicate with her at all.
At the very least, this show should spark a discussion of just what "low-functioning" is and how we can ever know if it's what we think it is. Amanda has plenty to say worthy of discussion, including on the topic of "cures." Posts: 4344 | Registered: Mar 2003
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A quick check of my bio would indicate I might have some opinions on some of what was discussed on that thread. Posts: 4344 | Registered: Mar 2003
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Honestly, when that thread was going on I kept expecting to see you, then I'd remember you haven't been around as much. Posts: 21182 | Registered: Sep 2004
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That was kind of a busy time. I was still recovering from muscle spasms around my left shoulder blade, recovering from a "disability ethics" workgroup that challenged my limited abilities to "play nice with others" and just generally fried.
Anyway, here's the relevant bit from my bio. I'll post it and then duck.
quote:During his time at Syracuse, Drake worked with the Facilitated Communication Institute and the Center on Human Policy. During that time, he focused his advocacy activities on the internet, designing and maintaining web pages for the Center on Human Policy, the Facilitated Communication Institute, and Not Dead Yet.
In fact, all my old articles for the old newsletter are still up there.
Two of my personal favorites (and only peripherally about FC):
The second article, especially, might be of interest to anyone who wants to explore some of the issues about some assumptions we make about certain kinds of disabilities - similar to the ones Amanda Baggs would like us to think about.
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