[chimera (OP)]

'Nobody likes a wise-ass' takes on Darwinian proportions:

http://www.msnbc.msn.com/id/7899821/

http://www.wired.com/wired/archive/9.12/aspergers_pr.html

[Ultima]

WTF having a kid with autism would be awesome! So long as you know they have autism and don't do anything to expose them to overt amounts of stimulus they can have a normal life??? Plus quite a lot of autistic people have very unique ways of thinking and perceiving the world. Who wouldn’t want a child like that.

wOw the world spins?

[DoctorBeaver]

I know 3 people with children who are profoundly autistic, 1 especially so. The latter can't speak or understand what is said to her. She is obsessed with routine & even the slightest change is enough to send her into 1 of her many extended tantrums during which she screams ceaselessly & throws herself & objects around. It is far from uncommon for these tantrums to last for a whole day or even sometimes into the next day. You can imagine what she's like when her special school is on holiday & her routine severely interrupted.
The other 2 can speak but display obsessive behavioural traits and the same need for routine. 1 insists that her toys & shoes are arranged in a certain order before she gets into bed & then re-arranged exactly-so once she's in. If just 1 of them is even slightly out of place a tantrum invariably ensues. They also both suffer from extended, violent & seemingly-random tantrums.
These are not the type of tantrums that can be cured as one would cure them in a "normal" (I hate that word) child. You can't ground a severely autistic child as you can't let them out of your sight anyway. Depriving them of something only exacerbates the situation & many would not understand if you tried to explain to them that their behaviour is wrong as they simply don't have any language. Even if they could understand it wouldn't do any good as they have no control over their tantrums.
My friend who has the most seriously affected child is lucky insofar as she herself has very supportive parents who will frequently take her daughter for a day or 2 to provide respite. Many parents of autistic children do not enjoy that level of support as the grandparents just can't cope & funding for state-sponsored respite is very limited and hard to get.

Autism is for life. There is NO CURE.

Still think it would be awesome?

[rosy]

Mm-mm. As I understand it ( and presumably DoctorBeaver'd have more information than I have) autistic spectrum disorders (ASD, including asbergers and also other more severe types of autism) aren't really "a disorder" but rather a set of syptoms which an individual may have to varying degrees.
Although there's a definite correlation within families, and therefore a genetic component, there's a general feeling that not all ASD-affected people have the same thing wrong with them.

As it's been explained to me, autism and aspergers are quite distinct in that an individual with aspergers syndrome will want to interact socially with other people, but will get into trouble because of an inability to pick up social clues as to how the person they're talking to wants them to behave (for example whether they're fed up of being told in great depth about warfare and weaponary through the ages), whereas autistic people want nothing more than to be left alone and not worried by people trying to interact with them.

Also, of course, there are essentially two populations of ASD affected people... some have cognitive impairments beyond the communication/social difficulties of ASD, whereas others essentially lie on the same sort of distribution of intelligence as the rest of the population.. some very bright, most less so.

Essentially what I'm saying is it's no use lumping all ASD sufferers together... some autistic kids will be a nightmare to live with and a never-ending source of worry to their parents about what will happen to them when they (the parents) are gone and can no longer provide the necessary care and routine themselves... which will almost certainly mean an institution of some sort. Which is why you hear harrowing stories of (usually mothers, often with a background in social care) taking their autisitic child by the hand and jumping with them off the top of a carpark, or equivalent.
On the other hand, I know a least one person studying for an undergraduate degree in Cambridge (and not for a degree in a science/technology subject, either) who because he's very bright is able to work round the Asbergers and is currently doing his finals.
Kids with Asbergers are far more hardwork, they have to be taught essentially to emmulate social skills that "normal" kids pick up automatically at a very early stage... but they (or some of them) can learn just to get on with life, leave home and carry on independently.

The difficulty, I guess, arises from the fact that what causes ASDs of various sorts doesn't appear to be at all well understood... "a genetic link" tells us nothing remotely useful. Especially where we're probably actually looking not at "an ASD gene" but at a cumulative effect from the combination of a whole range of genetic and probably environmental factors.

[DoctorBeaver]

Rosy - you're quite right in what you say. ASD covers a whole multitude of symptoms ranging from very slight to extremely severe. But whichever end of the spectrum a person is there are still major difficulties involved both for the sufferer and the carer.
I know a young adult with Asberger's & his problem, which you highlighted, is his lack of social skills. He has ended up more than a few times with a black eye or a cut lip where someone has hit him because of his reaction to a certain situation. He fails to read when someone is getting upset or annoyed & continues with what he was doing or saying regardless. He appears to be perfectly normal so others fail to realise he has this problem & they think he's just being stroppy (for want of a better word).
I remember when I was at secondary school there was a kid there who, in hindsight, I can now recognise as having had Asperger's. We just thought he was a gimp. We'd get him to crawl along the corridors for penny pieces. But in physics classes the guy was an absolute genius. Even at 13 years old he was teaching our physics teachers!
I know in my earlier reply I was highlighting the severe end of the spectrum, which may have been a bit unfair of me: but even being at the other end is no laughing matter.
As for causes - the girl I mentioned who has the most severe symptoms has a Mosaic Chromosome Disorder (I once sent a question about that to Chris in the studio & he was kind enough to give a concise & understandable answer on air). I'm not sure whether that is a contributory factor in her case but I believe there's a strong possibility that it is.
Although I'm a psychologist my speciality is addiction/dependence. I studied ASDs in 1 module when I was taking my BA but that was a long time ago and have only taken a subsequent interest due to my association with my friends. I am far from being an expert on the subject.

[chimera (OP)]

I think it's a whole spectrum, ranging from being slightly more aware of the fact you're aware than others, to the horror-like 'addiction' to rules and recurring themes.

It's a matter of a problem to 'integrate' some kind of very physical structuring in our memory. It has to do with our vestibular sense, in my opinion, and with how we literally 'embody' observed rhythms and patterns in our cognition, and it takes place in one of the oldest parts of our brains, the brain stem, still a poorly understood part of our body, since the (neo)cortex gets most of the credits.

In the above range, from slight to worse, there would only be a very slight 'delay' in the 'processing' of awareness, and lead to the bonus (some would say) effect of 'being aware of being aware', but all the time. Most people realise things do NOT work that way for them. They are going on a blessed form of auto-pilot, completely obsessed with what they are doing, and not so much 'separately' aware THAT they are doing something.

Now if this delay in 'embodiment' takes on serious proportions, like with the cases Eth describes, it may fail to 'catch' at all. Then patterns have to be relived and relived, like some bad movie. We are so used to doing it we're not even aware of it, but our body posture and our muscle tone play a much larger role in how our consciousness works, and a lot of it is automatic. When we 'reach out' for a concept, or 'acquiesce' to a fact of life, that's much more of a physical action than we give it credit for. We partly think with our bodies.

So anything going awry with our 'vestibular processing' hits us directly in the most precious of all our posessions: our mind.

The living are the dead on holiday.  -- Maurice de Maeterlinck (1862-1949)

[memasa]

I didn't read everything you have said so far on this subject, but being born disabled, I strongly object all kinds of Darwinist thinking.

My condition isn't genetic -- the doctors f*cked up "a few" things... But I'm not bitter because I'm really able to do everything my "normal" brothers (I'm a twin, BTW) do -- Aikido excluded. And if you ask me, I'm very sociable, fairly intelligent, and handsome (or so they say .

[memasa]

P.S. And if I will be a father, I will hold on to that principal. I emphasize, though, that my condition isn't genetic. But things don't always go as planned...

P.P.S. Of course, everyone wants to have a healthy baby, me too. Nurturing a disabled child is not easy. But, theoretically, if my child was disabled  I would surely have better than average mental resources to cope with the situation.

This is a bit off-subject...

[Ultima]

quote:I didn't read everything you have said so far on this subject, but being born disabled, I strongly object all kinds of Darwinist thinking.

Howcome? Obviously there are many cases where disability is caused from human administered error; a good example is with the use of Thalidomide which was a horrific mistake. However these kinds of thing can’t account for all known "disabilities" since we have historical accounts of many medical conditions long before doctors were involved? I guess it’s true that something such as alcohol that appears innocent enough can have profound effects on foetal development could mean that just about anything could cause a problem. But since alcohol is damaging in itself it’s a bit implausible to say that environmental factors or human intervention are to blame for all disabilities. The same goes for using genes as a get out clause so as not to investigate some disorder in greater depth. We are only at the beginning of our medical understanding of anything, it's a bit early to rule ideas out.


wOw the world spins?

[memasa]

Disability Ethics
in Contrast with
Genetic Engineering
Ref. to the comment by Ultima


SOCIETY

By "Darwinist thinking" I referred to evaluating people by their superficial attributes; survival of the normal.
We should all strive for the acceptance of all "divegency" from what is considered normal, strive to an all-inclusive acceptance of all minorities.
One of the disabling factors is society itself -- despite social security. Major structural changes would have to be carried out for completely removing the disabling influence of society. The word of the day is, or should be, "integration" or "inclusion" (on all levels of interaction). In the end, all would benefit from these changes. Think about the workforce that is lost because of inequal schooling system and ossified labor market!
I hope these thoughts are not just my Utopia. ...What was the name of that black guy again, the one with a dream... [] I heard he lives in St. Peter's Burg. [] Duh! I guess it's St. Petersburg. [:p]


WHICH WAY?

It's true that some people are against ANY human intervention in the development of an embryo. The debate is indeed interesting. There is no unambiguos biological, philosophical, juridical, ethical or theological solution to it. I am not one of those people.
Prevention of certain diseases and disabilities is acceptable -- after all it's a private (at least for now) and far-reaching decision. That just doesn't seem to be my choice as there are also some ethical problems to it:

 

• Who will decide what's normal and hereby acceptable in the future? (The parents or the medical authorities?)
• Where would we draw the line of normality? (Different lines for different nations?)
•  Will dyslexia or autism, for instance, be acceptable in the future?
• Will the borderline of normality really be based on health only, or will economical reasons also play a part?
• Will human intervention in genetic processes have an effect on [natural] evolution in the long run? (Would that be a good thing at large? "Teenage mutant ninja turtles ... Donatello, Leonardo, Michelangelo, Raphael..." [])
  
• How to define human dignity? (Does being "healthy" make one more worthy as a human being?)
  
  • Sadly, in the history of the disabled, some have already answered "yes" to the question in brackets. In its extreme that has meant killing [not the termination of pregnancy] and castration. [] (cf. the Nazi regime; http://www.bentvoices.org/culturecrash/oneill.htm)
  • Crime statistics are upsetting: according to estimates in USA people with disabilities are four to 10 times more likely to be victimized than people without disabilities.
    (Crime prevention tips: http://www.ci.fullerton.ca.us/police/tips/crimeprv.html)
  
  
• Gene tests vs Hippocratic oath(s) (There is no single answer.)
• Are the tests reliable?
• What if some authority decides to misuse the tests? ("genetic breeding" of human beings on false grounds = far-right extremism in disguise)
  
• Will genetic engineering of the appearance or psychological traits etc. of your offspring be allowed just because you wish so?("Blue eyes and blond hair, please." We are far from this horrid vision, but you never know...)


• Can the transparency of gene tests be guaranteed worldwide? (It would be practically impossible!)

ME, MYSELF AND I

If I had to decide to keep or not to keep a disabled baby, I would be very reluctant not to keep him/her. If I didn't allow him/her to exist (regardless of the disability), how could I allow myself to exist? Of course, I'm intentionally sharpening the issue because I truly want you to understand where I'm coming from. As you probably realize, saying "No, I don't want him/her to be born" would be extremely contradictory from my perspective (of course, I would discuss the matter with the mother).


AN ARITHMETIC EXERCISE

Life is always precious! It's stigmatizing to say any disability would be an indicator of (in)humaneness. Besides, disability hardly ever means total inability. Moreover, disability hardly ever is just a minus, or a sum of minuses.
People with a hearing impairment, for example, view themselves as members of their own culture which shouldn't be destroyed with hearing implants. Even though I'm not hearing impaired myself I think their view should be respected. They -- and all that are disabled -- should be allowed to preserve the (constitutional?) right of self-determination. Even though a disability is not everything, it's a big part of one's identity.

N.B. We would have lost some of the great men and women of our time if gene tests measuring present normality had existed before. Are we willing to make that sacrifice in the future?


LET'S PLAY HIDE-AND-SEEK!

IF GENE TESTING HAD BEEN INVENTED A 100 YEARS AGO, HOW MANY OF US CAN ASSUREDLY SAY THEY WOULD BE HERE TODAY?

Think about the number of disorders that have been unavoidable so far... I know I wouldn't be here if gene testing had existed before! There are "unwanted" genes in every lineage.

The disabled are not a community (approx. 10-15% of European population is disabled) outside of society -- we(?) have never been actually outside. We are a "threat" from within [], manifesting the phobias of those people who think they know what "normal" means.
Normality is as subjective as anything else. Disability-phobia has its roots in the Middle Ages:

quote:In the Middle Ages, people thought that disabilities were caused by some evil spirit. The fear of that demon made people afraid of disabled persons.

http://teacher.scholastic.com/scholasticnews/indepth/special_olympics/background/index.asp?article=background

Thank you, God! I am a Devil's advocate, yes, whatever you say. I have to admit, though, that Old Nick pays me well. [}:)][] By the way, have you ever visited Hellsinki, our capital? The  city, a true hellhole, has grown into a metropolis recently, but you'll LOVE it! []


THREE QUESTIONS REGARDING "GENE TESTED" SOCIETIES OF THE FUTURE

1. Is "pure" synonymous to better? (I am provoking, and I know that!)
2. What status will an "abnormal" individual generally have in a future society? (Will a new pariah caste be created?)
3. What kind of relation will the people of the future have to their history?


MORE LINKS

http://www.hgalert.org/ (this one especially: http://www.hgalert.org/topics/geneticSelection/agnesF.htm)

www.uvm.edu/~cdci/McPh_&_Sobsey.pdf [I thought I had coined the concept of "disability ethics" myself. []]

http://portal.unesco.org/shs/en/ev.php-URL_ID=1837&URL_DO=DO_TOPIC&URL_SECTION=201.html (Ethics: UNESCO SHS [Social and Human Sciences])

http://europa.eu.int/comm/european_group_ethics/index_en.htm (European Group on Ethics in Science and New Technologies)

http://www.unhchr.ch/html/menu3/b/72.htm

http://www.laakariliitto.fi/etiikka/laakarinvala.html [The Finnish version of Hippocratic oath. ¿Comprende? []]

http://www.disabledparentsnetwork.org.uk/resources/regular_requested_info.htm [READ Reports & Papers]

http://www.stakes.fi/include/incc310.html

http://www.bbc.co.uk/ouch/yourspace/gdbvote.shtml

http://www.answers.com/topic/list-of-persons-with-autism-spectrum-disorders

http://www.amazon.co.uk/exec/obidos/ASIN/1873797257/tiltingatwindmil/202-6643581-8471800

http://www.amazon.co.uk/exec/obidos/ASIN/0415300819/qid=1118948362/sr=1-4/ref=sr_1_8_4/202-6643581-8471800

http://www.huxley.net/


Links connected with savant autism

http://www.autism.org/savant.html [An article about autistic savants by Stephen M. Edelson, Ph.D.]

http://www.wisconsinmedicalsociety.org/savant/faq.cfm (Savant FAQ)


Even more links to come...


SOMEONE FROM FINLAND

[chris]

>>>
We would have lost some of the great men and women of our time if gene tests measuring present normality had existed before. Are we willing to make that sacrifice in the future?
>>>

I'm intrigued to know who these people are, do please tell.

Chris

"I never forget a face, but in your case I'll make an exception"
 - Groucho Marx

[memasa]

This is hypothetical, but assuming that the gene(s?) causing ALS could have been located before the birth of Stephen Hawking, we could have lost him.

I just read that less than 10% of ALS cases are genetic. But I remember Hawking said in one documentary that his condition is genetic.

Just one example...

[chris]

Stephen Hawking hasn't got classical ALS anyway, he doesn't fit the bill for the normal presentation of the condition. It's clearly a very atypical variant of the disease.

Good suggestion though.

Who were the other 'greats' that you had in mind for eugenic wipe out ?

Chris

"I never forget a face, but in your case I'll make an exception"
 - Groucho Marx

[memasa]

Well, I'll try this one... Supposing the evidence for genetic predisposition for schizophrenia is tenable...

We could have lost

- At least John Nash
- Who knows how many more brilliantly mad geniuses

[memasa]

Genetic predisposition for anything "abnormal"...

SOOO many people......................................

[memasa]

You probably could have wiped out a great number of us Finns (population 5.2 million) by saying: "This embryo has a genetic predisposition for alcoholism."

[daveshorts]

Isn't this one of these questions about balance? If we get rid of all embryos who are slightly odd, you would loose interesting points of view and society would be immensely poorer as a result. However the reason that a large proportion of the population doesn't have a serious genetic disease is that natural selection is allways selecting out genes that don't work (isn't it like 10% of embryos which are naturally aborted anyway because they are not viable). If medicine stops this process a larger and larger proportion of the population will have diseases.

If a significant proportion of the population has a disease as serious as ALS the are simply not enough people to look after them, let alone grow food make things etc.

Where you have to draw the line is partly an economic question - many 'primative' societies that don't have the resources to care for a sick child will commit infanticide on very sickly infants, because if they don't someone else will starve.

Luckly we are not in this situation yet, but at some point in the future we will have to either develop some sort of germline genetic engineering or some sort of filtering process. Although it is possible that technology will bypass this (either by being able to easily solve all the problems or by blowing up the world) before it becomes a major problem...

[memasa]

daveshorts:This would cease to be an economic problem if all disabled were given the chance to be productive! Technological and medical advances that won't remove our identities are very welcome, and I still stress the importance of societal change.
What makes you think physically challenged people wouldn't be able to "grow food, make things etc"? Are we still useless eaters? I guess growing food is much more simpler than child rearing which isn't, in many cases, impossible either.

I refuse to be seen as a burden in this modern society!

[daveshorts]

I am not saying you are a burden (and your disability isn't inherited so it doesn't fall within the scope of this arguement), but I think it is hard to argue that someone who is in a persistant vegitative state isn't a burden on society, so at some degree of disability to usefulness ratio people must consume more than they can produce or the investment in resources in someone to let them work is not justified by what they could produce with this. This is not a problem if the proportion of disabled people is relatively small, but if the proportion becomes large it suddenly becomes a problem..

 If the overall net productivity of society is negative people start starving... We are nowhere near this point and technology may change too quickly for this to be an issue, but you can't just pretend that it isn't an issue in the long run.

[memasa]

daveshort: [...]"Let them work[...]" It isn't justifiable on a large scale to let anyone work because of lower social position. The answer is still societal change for getting the (dis)able(d) to work.

[...]"but if the proportion becomes large it suddenly becomes a problem.. [...]people start starving..."

Yeah, the world needs scapegoats. [}:)] Will the disabled be blamed on causing famine in the developing countries? [][}:)]


Are all unemployed (unproductive?) people useless? It would be quite propagandist to answer "yes".

I AM NEGATIVELY AMAZED!!!

Continuing....

I really hope I could provide you with an authentic [mathematical] problem from the Nazi era. You'll have to watch a movie called La Vita è bella (1997) aka "Life Is Beautiful". Anyway, the problem goes something like this: "One disabled costs this and this much money, how much would we save if this and this many disabled were killed?"

If the disabled were included in this "modern" society you wouldn't just save money but win money.

Of course it's not the same thing! But... And I'm not implying that you are... *coughing*...


What makes you think the proportion 10 to 100 or 15 to 100 will increase if gene test aren't made? Any scientific evidence?

I'm not saying that gene tests aren't acceptable, though, in some cases.