Autistic Appointee to US Govt Agency Does not support a Cure

[Wing Commander MAD]

PS: Alyrium, my hats off to you for being able to leave your social safety net in pursuance of your dreams. I am no where near that point (albeit my social contacts are basically reduced to family at this point), though I hope to be able to someday.

It's amusing that people who take steps to deal with their problems also face these challenges, but you don't respect that because they disagree with you. I'm personally not seeing the gulf between 'medicated' and 'cured' beyond a cure actually working as opposed to moderating the symptoms, but I guess wanting a better life for myself and my children is crazy.

The stigma of mental health follows here. If you will yourself to be better, then you're tough and ok. If you take a med or therapy to do it, well that just isn't right, you should just will yourself into it. It's silly, but as they continuously say, it's there choice.

Not at all, I merely have respect for Alyerium for being able to do something I as yet haven't. I might have respect for JSF and/or Stark if they didn't act like assholes (add arrogant for Stark) in the process. I don't give a damn how you deal with a problem, be it force of will, meds,or what have you. I merely find the idea that I should be automatically accepting of something to make me "normal" no matter the cost to what really is me, my mind, with no reservations dubious at best. I'm somewhat leery of alcohol and opposed to personally using leisure drugs specifically because of their mind altering properties. I've accepted the changes brought about by the medication because the positives have outweighed the negatives. Even so, it was still a gradual and careful approach in finding my current level of meds. The thing with meds in this case is that if there are undesirable results you remove them, and when your brain chemistry returns to its normal state, the changes are reversed. The temporary nature of the changes in the event of undesirable ones is one of the advantages of treatment versus cure. Now if you could actually prove that this cure, would do nothing to my personality, save removal of certain compulsions and certain anxieties (in a way similar to what my current meds do), alter the general mentality regarding with which I approach situations/concepts, or change my memories, then I would strongly consider it after consulting professional opinions. I simply doubt our ability to develop methods that meets all those criteria while being a permanent "fix" now or in the foreseeable future. Maybe I'll be proven wrong, if so good, but even then the person still deserves the basic human right of being able to forgo the procedure. We are dealing with the mind here, the very essence of their being, not something society should be able to take away merely because trying to compensate for such individuals is inconvenient and at worse expensive.

Oh, Stark wanting a better life for yourself and your children and taking steps to achieve that isn't crazy. Expecting that ever other person share the same idea of what a better life is and what the acceptable costs are, however, is crazy.

[Stark]

What a coward. Two people deal with the same things, but you love and respect the person who agrees with you and describe your 'opponents' as arrogant authoritarian assholes for suggesting change is a normal part of life. :V

Can anyone actually quote anyone saying anyone should be forced to do anything? No?

It's fucking ludicrous that you'd describe your crippled, narrow life as just 'different' to the life I have through dealing with my situation. I could have hid in a cupboard my whole life too, you know, but instead I grew up and lived life. The attitude Knife talks about (ie, that you can 'be yourself' and 'don't need treatment') accurate describes me in highschool. PS? My life sucked, and it was only like that due to pride in refusing to accept treatment. Oops. Turns out the illness itself makes you think that changing anything is difficult, bad and dangerous.

[Wing Commander MAD]

Crap, that should read "not alter the general mentality" and "not change my memories"

[Stark]

It's lame that you talk about withdrawl from medication, when similarly you can clearly experience the problematic senstations brought about by your disorder. If those feelings were as avoidable as withdrawl, why woudlnt' you do so?

[Alyrium Denryle]

Who cares about that T? Nobody was advocating witch doctor shit. The conversation turned this way with a hypothetical 'cure' not a crack pot bullshit item. Though sniffing aerosol MS cottin would be a hell of a thing.

I think the rationale is kinda like mimicking the effects of ecstasy. The autistic kid who has emotional distance issues or what have you sprays oxytocin into his nose and is all of the sudden like "Whats your name? I love you"

The thing with meds in this case is that if there are undesirable results you remove them, and when your brain chemistry returns to its normal state, the changes are reversed. The temporary nature of the changes in the event of undesirable ones is one of the advantages of treatment versus cure. Now if you could actually prove that this cure, would do nothing to my personality, save removal of certain compulsions and certain anxieties (in a way similar to what my current meds do), alter the general mentality regarding with which I approach situations/concepts, or change my memories, then I would strongly consider it after consulting professional opinions. I simply doubt our ability to develop methods that meets all those criteria while being a permanent "fix" now or in the foreseeable future.

My thoughts exactly.

It's amusing that people who take steps to deal with their problems also face these challenges, but you don't respect that because they disagree with you.

I love how you imply that I have not taken steps to deal with my problems.

I'll still reiterate my original problem with all this, the 'I won't kill myself' with a 'cure' argument. Any number of diagnosis and disorders are treated and 'cured' through changing the way people think and how they act, essentially changing 'who' they are.

To use an analogy. Those are software changes. Yes, do the programs you run alter the way the computer works? Of course. If there is a bug in your software (like depression) of course you fix it through patches etc. You can think of those neurotransmitter problems like depression and ADHD in the same way. You grow through your life, you update your programming. At puberty you switch out some relatively minor hardware etc.

Autism though is a lot more pervasive. It is the computer equivalent of the major hardware like the motherboard, CPU etc. A "magic pill" for autism would be like switching out those major components and then doing a soft upgrade to windows 7. Sure, all the programs (memories and associated regulatory mechanisms) are there, the computer (person) has the same name and case... but is it really the same computer?

The problem I have with your argument is that you are engaging in a no-limits fallacy. "People change through their lives, therefore any change no matter how drastic and rapid does not change who the person is". The reasoning is fallacious. I dont know if the change in case of autism really does effectively kill the person and replace them with a doppelganger, but it a very legitimate concern with changes to brain structure that are that rapid and that large.

In severe seizure disorders, we cut the corpus callusom separating the two hemisphere radically changing the architecture of the brain. People choose this because the 'change' is better than the disease.

And if a spike goes through someone's brain in the right location, you completely change the personality. With a severing of the Corpus Collosum, that does not really happen... granted their left hand might do some interesting things.

The quantitative and qualitative difference really does matter.

Saying that you're just fine with autism and don't want to 'change yourself' but I take SSRI's, or I've worked for years and I don't want to invalidate all that work with a 'cure' is just feeding back into your disorder.

If there was an actual cure that only removed the anxiety etc, but did not by necessity restructure the majority of my brain, I would be a hell of a lot less wary of it. If I had typical social anxiety disorder or depression there would be no question about my course of action. All those do is correct an imbalance in neurotransmitters. Restructuring the parts of my brain that deal with emotions, face recognition, and language, and those are BIG important parts of my brain, with all of the cascading effects that this entails is too much. If it were just a matter of a "cure" that magically removed all the anxiety and allowed me to put spoken names with faces (I dont have a problem if the name is written for some reason), there would be no question. However, I am also thinking about how that cure would have to work, and all of the other things that said cure would entail if it was possible to actually make said mechanism work.

You could say that I am thinking about two different things here I have conflated, I suppose. The concept of self is one thing. What does it mean to be an individual etc. Then there is the mechanistic problem of how a cure for autism would actually have to function neurologically, and what that means with regard to my sense of self.

I am naturally of course, wary of changes. On the other hand, I have demonstrated the ability to override (I was scared shitless of moving, but did it, god damn it). So address the argument, dont appeal to motive.

[Stark]

SSRIs are really bad business that is worth avoiding. Side effects, withdrawl, it's a management system that needs management itself.

[Alyrium Denryle]

SSRIs are really bad business that is worth avoiding. Side effects, withdrawl, it's a management system that needs management itself.

This is true. You have to tailor dosages, type of SSRI, etc. The regulatory mechanism for serotonin itself is interesting and plays a role yadayada.

[Andrew J.]

I don't want to change anything about my brain. Now, I'm high-functioning and my situation is very different from many others on the autistic spectrum, but I still don't feel comfortable saying that other people ought to do something that I personally wouldn't.

[Broomstick]

The only comparison I can make with my personal situation are all the assholes who insist that I have LASIK or other eye surgery to fix my eyesight permanently - and damn the consequences. My concerns about the inability to fully correct certain aspects of my vision such as astigmatism or halos or the almost certain loss of my ability to see at night all fall on deaf ears. To these people, it's more important I can wake up in the morning and read the alarm clock without reaching for my glasses than my ability to drive at night safely. They don't consider what's important to me, and they don't care about possible bad effects.

Which, of course, is a pretty damn weak comparison.

I can't imagine a real cure for autism could be done without significant changes to the person's brain, and what the hell side effects could there be? It would be a safe assumption there would be side effects. What sort and how intense I have no way to know at this point, but some of them could be as inconvenient or disabling as autism itself. Is it really preferable that I have 20/20 vision without corrective lenses on a sunny afternoon if it means I am barred from driving at night, which would be inconvenient to the point of disability? Is it preferable to manage high functioning autism if the alternative is a cure with side effects that might be (pulling a wild ass guess or three out of my arse) severe mood swings or loss of memory or the opposite of obsessive focus in the form of constant distractability to the point of being unable to follow conversations if there is the least distraction? Or something else?

For the most severely disabled autistics withholding a treatment may be entirely unethical, if it's a situation where the cure will dramatically improve them despite side effects. But if someone is high functioning, or has that capacity, then a discussion of whether management or cure-with-side-effects is preferable may be entirely reasonable.

After all, if someone has a heart or kidney or liver problem we try to manage it first, only if the probably is terminally severe do we look to the "cure" of an organ transplant. Some treatments really do solve a serious problem, but they cause other problems, such as organ transplants requiring daily medication and carrying significant risks of other illnesses such as cancer.

Altering peoples' bodies or brains should not be treated lightly, although there is that tendency to do so when it's someone else's problem and someone else being asked to swallow a drug or go under the knife. The people who have to live with the consequences (barring situations of genuine incompetence, not just unpopular choice) should have some input into these decisions, don't you think?

I don't know what side effects a cure for autism would cause. Until that's known who can say? But it would be awful improbable that it would have NO side effects.

Meanwhile, there's no question that better management techniques should be researched. There is no question that there are things that are helpful, be they coaching in social cues or even some medications. But such treatments must be tailored to the individual.

And, frankly, as a "neurotypical" I think FAR too much emphasis is put on social popularity and not enough on basic competence when it comes to corporate America. Also too much emphasis on cosmetic appearance and not enough on, again, genuine skills. But that is definitely getting off topic, aside from mentioning that if more value was put on skills and competence it would be easier for the autistic to hold down a job. Would also be easier for the ugly, the overweight, and those suffering from certain types of mental illness to get and hold jobs, too. But, alas, the beautiful and popular people are in charge, which accounts for a lot of the shit the world is in.

[Wing Commander MAD]

It's lame that you talk about withdrawl from medication, when similarly you can clearly experience the problematic senstations brought about by your disorder. If those feelings were as avoidable as withdrawl, why woudlnt' you do so?

First off, I never said anything about withdrawl, try reading more carefully. I said that if there are adverse side effects to taking a medication or a particular dosage of medication you can remove said medication and the brains chemistry should readjust to what it was previously, at which point you can try a different medication, dosage level, or alternatives such as therapy. The permanent nature of a cure doesn't allow for said readjustments if the results of the cure are undesirable.

I'll deal with the rest tomorrow.

[whackadoodle]

2. Newsweek article French scientists used a Oxycotin nasal spray in a limited experiment on Asperger's Syndrome patients.

Actually, the article stated that they sprayed oxytocin, not oxycontin.

[Darth Fanboy]

As for the question of 0-17..

1) Even if you can fully understand an Autistics mind, a child's mind is still a bizarre and ever-changing place. It's never good, in my mind, to start mucking about in there. Genengineering is another thing.

So to clarify, you would not be against genetic engineering that would prevent autism, but you are against a cure for children?

2) For any age group: You must realize that there is no sign autism is like cancer, in a single part. How much of your memories, personality, responses, your, for want of a better word, self, will become unrecignizable, even alien, to yourself after this magic pill?

If we are talking about a young enough child, then they really haven't had enough time to develop this whole personality. I can understand why an adult such as yourself would be hesitant, or refuse any kind of treatment. I had a similar quandary when I was undergoing treatment for a different condition a year ago. I liked who I was quite a bit but I also recognized that I needed to make some changes so that I could live a better life.

I think a young enough person will benefit more from the improved development than he or she would be adversely affected by the personality change.

Again, all we want is the right to choose for ourselves.

I don't have an issue with that, but I am curious as to how this "right to choose" would be applied to minors, especially when you consider the vested interest in a cure that many parents of Autistic children have.

[SirNitram]

As for the question of 0-17..

1) Even if you can fully understand an Autistics mind, a child's mind is still a bizarre and ever-changing place. It's never good, in my mind, to start mucking about in there. Genengineering is another thing.

So to clarify, you would not be against genetic engineering that would prevent autism, but you are against a cure for children?

2) For any age group: You must realize that there is no sign autism is like cancer, in a single part. How much of your memories, personality, responses, your, for want of a better word, self, will become unrecignizable, even alien, to yourself after this magic pill?

If we are talking about a young enough child, then they really haven't had enough time to develop this whole personality. I can understand why an adult such as yourself would be hesitant, or refuse any kind of treatment. I had a similar quandary when I was undergoing treatment for a different condition a year ago. I liked who I was quite a bit but I also recognized that I needed to make some changes so that I could live a better life.

I think a young enough person will benefit more from the improved development than he or she would be adversely affected by the personality change.

Again, all we want is the right to choose for ourselves.

I don't have an issue with that, but I am curious as to how this "right to choose" would be applied to minors, especially when you consider the vested interest in a cure that many parents of Autistic children have.

Yes. Genetic engineering to remove it from the gene pool is great. But any cure will likely have hefty side effects, something young children, in my moral view, shouldn't be forced into.

I'm not gonna indulge in the ridiculous notion of a magic-wand cure.

[Darth Fanboy]

Yes. Genetic engineering to remove it from the gene pool is great. But any cure will likely have hefty side effects, something young children, in my moral view, shouldn't be forced into.

I'm not gonna indulge in the ridiculous notion of a magic-wand cure.

I don't think there will be a magic wand cure either, but you have no idea what those side effects will be and you have no idea how further research into a cure could help reduce or eliminate side effects either.

[SirNitram]

Yes. Genetic engineering to remove it from the gene pool is great. But any cure will likely have hefty side effects, something young children, in my moral view, shouldn't be forced into.

I'm not gonna indulge in the ridiculous notion of a magic-wand cure.

I don't think there will be a magic wand cure either, but you have no idea what those side effects will be and you have no idea how further research into a cure could help reduce or eliminate side effects either.

Indeed. But that makes the question one of most medicine: Is the side-effects worth the cure? And it cannot be sensibly answered until we have such a cure.

[Darth Fanboy]

Indeed. But that makes the question one of most medicine: Is the side-effects worth the cure? And it cannot be sensibly answered until we have such a cure.

Of course. But the reason for my line of questioning is because while you make a case for not utilizing a hypothetical cure than I can understand, your right and ability to make a self determining decision is not always shared by minors. Thus creating a different dynamic to the discussion.

[Stark]

If your response to the OP is 'depends on what side effects exist, if any', why did you say 'most of us on the Spectrum don't want cures. Why would we?'

[LadyTevar]

2. Newsweek article French scientists used a Oxycotin nasal spray in a limited experiment on Asperger's Syndrome patients.

Actually, the article stated that they sprayed oxytocin, not oxycontin.

Whoooops. I was looking for the one that triggers childbirth and happy mom-baby bonding, not the painkiller. From what I understand, a few thieves have made the same mistake when trying to break in a pharmacy for their high....

[Broomstick]

Indeed. But that makes the question one of most medicine: Is the side-effects worth the cure? And it cannot be sensibly answered until we have such a cure.

Of course. But the reason for my line of questioning is because while you make a case for not utilizing a hypothetical cure than I can understand, your right and ability to make a self determining decision is not always shared by minors. Thus creating a different dynamic to the discussion.

A parent's right to make decisions on behalf of their children is not unlimited. My Other Half nearly lost his right leg because of one too many surgeries to fix his neurological problem - in his case, the problem being at the lower end of the spine rather than in the skull. He also suffers side effects from another surgery that was not in his best interests. Just because a cure exists does not mean a parent can or should make the decision for a child. I would hope that, if there are significant side effects, at least the initial children subjected to it will have their cases reviewed by an impartial ethics panel.

[whackadoodle]

Whoooops. I was looking for the one that triggers childbirth and happy mom-baby bonding, not the painkiller. From what I understand, a few thieves have made the same mistake when trying to break in a pharmacy for their high....

Easy mistake to make. I had to check twice before seeing Knife's reference to insuffulated oxycodone.

However - the Newsweek interview that you cited seemed to be an interesting and productive avenue of research. To either lead to new insights into autism or to discount this hormonal pathway. It is not the fault of the researchers that Newsweek chose to title the article - in print and online - as "the-bonding-hormone-that-might-cure-autism"

From what I understand, a few thieves have made the same mistake when trying to break in a pharmacy for their high....

That's fucking hilarious I wonder how many users have ended up with lactating moobs rather than a hillbilly high?

[whackadoodle]

In regards to civilization's arbiters taking autism into account, I found this, again on Newsweek. Yeah for my birthtown

In late May, Clifford Grevemberg had a traumatic encounter with the police. Grevemberg, 18, was standing outside the Rock House Bar and Grill in Tybee Island, Ga., waiting for his brother to pick up some cheeseburgers when he was approached by officers, Tasered, and arrested for disorderly conduct. A police-department report posted by the Savannah Morning News says Grevemberg was “staggering back and forth and appeared to be either intoxicated or on something.” By the time his brother came out of the restaurant, Grevemberg was handcuffed and bleeding with a broken tooth. Only then did police receive the critical information they’d been missing: Clifford Grevemberg is autistic.

Three days later, and several hundred miles to the north, the Stafford County Sheriff’s Office in Virginia had its own disturbing clash with autism. After receiving a call about a “suspicious male, possibly in possession of a gun,” sitting on the grass outside an elementary-school library, officers confronted Reginald Latson, 18, who is African-American and has Asperger’s disorder. Latson wound up being charged with assault and battery after he “proceeded to attack and assault the deputy,” according to a police report. No gun was ever found. Details of the incident are complex and still evolving, but the preliminary reports were enough to gain attention from members of the autistic community who worry their children could be next. In the words of one mother, this story is “my nightmare.”

Law enforcement and autism are a volatile mix, and not an uncommon one. “It happens quite regularly, unfortunately,” says Lee Grossman, president of the Autism Society, a grassroots organization based in Bethesda, Md. Decades ago, people with autism and other developmental disorders tended to land in institutions, where they had little interaction with anybody other than family members and staff. Today, autistic children and adults live with their families, go to local schools and, in some cases, get jobs in their communities. The unfortunate downside to this independence, says Grossman, is that “many more individuals on the spectrum are having run-ins with the police department and others, and it’s generally not a very positive experience.”

Autism is a diverse condition, but it is characterized by behaviors—repetitive movements, poor eye contact, sensitivity to lights and noise—that can be misinterpreted as unusual and even disrespectful. Even innocent behaviors can be come off as malicious. Grossman tells the story of an autistic man who loved to ride the bus. One day, he started staring at a female passenger. “She told him to stop, he wouldn’t, and it got uglier and uglier,” says Grossman. Ultimately, the police were called. The man’s crime turned out to be an autistic trait: fixation on a single object. In this case, the man was fascinated by the woman’s dangling earring.

Perhaps 'official' awareness and training by our society's protectors and enforcers would not be amiss.

Shit!!! Forgot the link - Newsweek link

[Stark]

If you live somewhere where you can get arrested for staggering around, autism isn't the problem.

[whackadoodle]

If you live somewhere where you can get arrested for staggering around, autism isn't the problem.

I don't disagree with that. Especially considering the victim was African-American. However, once the police were informed by the victim's brother that the victim was autistic, the problem became unwound. Perhaps if a training regimen were in place, perhaps if there were a field test developed that could help officers distinguish between the intoxicated and the autistic, then, perhaps, unnecessary harassment of the public and the waste of civic resources could be avoided for the most part.

[Broomstick]

It's not just autistics, though - there have been numerous accounts of diabetics who were having severe reactions to excessive blood sugar who would up being arrested for public intoxication and tossed in cell, only to fall into a coma and die. Deaf people have been shot for falling to obey spoken orders they simply could not understand. Disability and law enforcement are frequently a poor mix.

[Wing Commander MAD]

What a coward. Two people deal with the same things, but you love and respect the person who agrees with you and describe your 'opponents' as arrogant authoritarian assholes for suggesting change is a normal part of life. :V

Can anyone actually quote anyone saying anyone should be forced to do anything? No?

It's fucking ludicrous that you'd describe your crippled, narrow life as just 'different' to the life I have through dealing with my situation. I could have hid in a cupboard my whole life too, you know, but instead I grew up and lived life. The attitude Knife talks about (ie, that you can 'be yourself' and 'don't need treatment') accurate describes me in high school. PS? My life sucked, and it was only like that due to pride in refusing to accept treatment. Oops. Turns out the illness itself makes you think that changing anything is difficult, bad and dangerous.

I'm all too aware that change is part of life. Maybe I'm being too harsh regarding you and JSf as assholes. I know for a fact that I have that ticked off as adjectives (arrogant for you as well) next to your names in my mind from past observations of your personalties here. Maybe I'm wrong and need to reevaluate my beliefs regarding you two.

No, I don't believe I can quote anyone saying that people should be forced to do anything either. Though I certainly got the feeling that there was some of that in Lonestars little tirade against Nitram, albeit that is a situation very different from my own.

Oddly enough, I've also dealt with my situation as well. It started in roughly 5th or 6th grade when it became apparent that something was wrong and I was unable to cope with my various anxieties. After my family and I spoke with the school district's psychologist I got referred to specialists. My treatment started with therapy which helped a lot. Unfortunately that wasn't enough so I got placed on medication which helped tremendously. In high school an antiaxniety drug was added. I've since been on a stable dosage for years now. So yes, I've dealt with my situation to the best of my abilities and have sought the help of professionals when and where I fail. Unfortunately Stark, we all can't be like you and JSF and have apparently near complete success. It turns out that the treatment of mental disorders, just like any other aspect of human health, has recovery occurring along a spectrum rather than a singe point where all outcomes are equal. In my case, and that of many others, I merely have to keep working to deal with the situation.

Why I am hesitant of any "cure" is quite plain. Certainly, there are aspects of the disorder that make me more averse to change, but there are also the very real fact that a cure isn't going to be a nontrivial thing. This is simply a reality of dealing with the systems of the body that we are. I think its fairly safe to say that all of medicine is a matter of balancing the risks and the rewards of treatment for the patient. I simply am not convinced that any cure if created will necessarily have more ticks in the pros column at this point. That said genetic engineering to prevent any of this from ever happening is an entirely different matter, and one that I'd generally support so that others don't have to suffer.