Do all parents with severe ASD children want a cure?

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I can't wait for a genetic screen soon enough. I am probably one of the few honest folks who will admit to aborting a fetus with a genetic abnormality or any sort of disability. I do not want to share too much information but I had already had the experience of knowing how a child's disability can devastate a family, prior to having my kids. I had amnios with both kids and was fully prepared for an MTP should something show up.

But God had a wry sense of humor.

Last edited by HisMom on 15 Apr 2014, 12:12 am, edited 1 time in total.

HisMom and Tarantella as well, first I'm back and I'm sorry for snapping off at you like that. I've just been dealing with personal crap in my life. Is everything cool?

Second, I do have a nephew who has both LFA and cerebral palsy. It does put things in a different light because he is total care. He is not even able to wipe his own butt. His mother did crack while she was pregnant with him so that may play a factor I don't know.

The thing is both views have some merit to them and they intertwine with much larger issues like the abortion debate, genetic engineering, identity and the self. I don't think there are really any easy answers to this. Therein lies the problem. How do we all live with nobility, honor, ethics and virtue? I am ignorant in many areas because I have more questions than actual answers. Every time, I come up with a possible answer I end up with more questions. It bothers me.

Third, more than likely you're a good mother trying to come up with solutions and living when things are tough for you. I'm not sure. Is this correct?

Therein lies the problem. Is abortion a form of murder? Pro-lifers would think you're a murderer. Who's right though? What is the moral thing to do? How do we rectify this? Yippy said it was eugenics. What we have is complex and multifaceted issues that delve into many complex topics and concepts. I'm conflicted. I'm sorry.

Last edited by cubedemon6073 on 14 Apr 2014, 10:57 pm, edited 1 time in total.

It took African Americans decades to receive their civil rights and there are still race problems in this country so I'm afraid you're right about society. Again, sorry for snapping at ya.

I have long since learned that those that preach are rarely the ones walking in our shoes. I don't care about being called a murderer or being considered immoral. For me, the only one I care about is my son. Is it fair to bring a life into this world FULLY KNOWING THAT THAT LIFE WILL SUFFER ? You tell me that ! Is it the moral thing to do ?

When I said I would have chosen to abort him HAD I KNOWN, I am not thinking about me or my convenience but about him and what suffering he undergoes every day, and how he will survive after our time. I worry about not just the now, but the future. My son is helpless and fragile and I am fiercely protective of him. If I knew that someone was hurting him, I would destroy that person in the blink of an eye. Thing is, my son can't tell me if anyone hurts or mistreats him. I go by my guts and do random checks to make sure he is being treated well. But what after I am gone ? I want my daughter to have her own life, her own family to care for, and her own career to maintain. I don't want her life taken over by the care of her brother.

IF he gets better, I would be the happiest soul on Earth. But every day, as he gets older, my fear deepens and I worry. I truly wish to God I had never brought him into the world. He deserves better.

I'm sorry! I honestly have no answer for you at all. I'm ignorant and stumped. I have more questions myself than answers. Will you please forgive my trespasses against you? You believe you would have been doing good for him. What is evil then? What is good? What is vice and what is virtue? How can I judge you when I know not what these things are? Like I said, I'm sorry.

It's all an opinion. There is no right or wrong answer.

Eh I don't see how stating a fact is being judgmental. If people have admitted such things, how is it being judgmental if you repeat it?

Some people could admit online they sell their food stamps for money to get drugs and I come online and say "Some do use their food stamps to sell them for drugs. I have seen some people admit that online." I fail to understand how that is being judgy because I am repeating what I have heard from people who admitted it. So it's not like it came out of my own head or that I came up with that conclusion. Same as for what I said about daycare.

When I mean right and wrong I mean morally right and wrong. Therein lies the problem. All of the opinions have some validity to them. I can't really get to an opinion of my own because of this. It is so complex and multifaceted and goes into greater issues like abortion, resource scarcity, and genetic engineering. It goes into ethics, the self, identity, virtue and morality. I have no opinion or answers. I only have questions.

Tarantella brought up resource scarcity and her point has some validity to it. Some people on here believe if one cures the autistic especially by genetic engineering you change the very essence of their identity. What gives someone there identity? Is it genetics, the person's thoughts or a person's soul? Let's say one cured a person of their autism would you fundamentally alter their identity and soul? Let's say it did. Is it ever moral to do this and if so when? When is it okay and not okay? To me, there are lots of questions that need to be answered. These questions are tough questions to truthfully answer and things are not simple as they seem. The only thing I truthfully know like Socrates is that I'm ignorant on many matters at hand.

Honestly, I don't even know how to run my own life effectively so how can I tell anyone how to run their own life including a potential child I may father? So, how can I judge when I know not?

But it's still an opinion about if it's morally right or wrong. It's okay to not have an opinion on something and some people are like that. In politics many people act like their opinions are right and a fact. That is why these topics get heated because people have a strong opinion about it and their feelings get in the way. That is why politics is a strong topic to discuss and this is a political topic people are discussing now in this thread. I always think there is no right or wrong in it because it's all opinions.

True, there are no right or wrong opinions, they are all opinions, that is all. I like to liken opinions to personality trait quizzes - there are no right or wrong answers. You are what you are, and your beliefs & thought processes are what you have !

I also believe in the adage that people convinced AGAINST their will are really of the same opinion still. Meaning, that under heat & pressure, some folks may appear to change their opinions, but it all a charade, they are just pretending to have a change of heart just to stop drawing the flak !

I normally do not want to discuss contentious topics (such as abortion, religion etc) but I chose to openly state my position here. It was not with the intention to get people riled up, but to state how much I fear for my boy's future.

He is still young and so much can change. Medicine is making rapid progress. Even if a cure is not found in my lifetime (or during his), there may still be enough advances to help improve the quality of his life and his experience of it. My son is a warm, happy child - he has an easy going personality and is a complete sweetheart. I am no longer as hung up on speech as much as I was as long as he can communicate, but I do wish there was more connection with him. He is so sweet and trusting it worries and bothers me. If he could learn to stand up for himself and was able to defend & advocate for himself, most of my worries would disappear,

I think that really is at the crux of all my angst - his defenselessness and his inability to communicate his thoughts, fears, wants and dreams.

Perhaps we need a genetic test to make sure no more schizophrenics are born. And what about type 1 diabetes? Let's do away with any fetus who has that, too. And how about left-handed people? They are more prone to accidents, and injuries cost money to treat.
Eugenics is a slippery slope.

How do I convey the words? Okay, I will drop the words right and wrong. On the Myers briggs test I score as an INTP. The thing is autism issues cross many issues of ethics and economics. I guess in a sort of way I do have an opinion. In my opinion in order to come to a sound conclusion on an issue at hand we have to have all or at least a good chunk of the necessary relevant data. I do not believe we do have all of the relevant data to come to a sound conclusion.

I will say this. IMHO, if we're to have effective solutions then we need to be able to ask the right questions and obtain the actual relevant facts. These are some questions that I have.

1. How do we live our lives with nobility, virtue and ethics within the realm of resource scarcity? In fact, what is nobility, virtue and ethics? What is the essence of these things?

2. How do we teach our children the same in an ethical, noble and virtuous manner?

3. What gives people identity? What makes HisMom, HisMom? League_Girl, what makes you, you? Is it our genetics, is it our thoughts and feelings? Do we even have a soul? Does the soul make us who we are? In fact, what is the self? What is the essence of the self?

4. If we cured an autistic, would we destroy his "self"? Is the self malleable and should we mold this self? In what ways are we to mold the self and when should the self be molded?

5. If the self blocks from achieving virtue, nobility and ethics and he can't support himself to achieve these things then is he living a true and authentic life? Can a better self be constructed and should it?

6. Is there a true self that is permanent and fixed or is the self ever evolving? If it is ever evolving, what role and what methods should we take and use to achieve our most nobles of ends for ourselves and for others?

7. Is there a sacredness to life in of itself? What is the sacredness to life? Is life only as good for what is utilitarian about it? Does life have intrinsic value or is it only as precious as what it can produce for others?

These are questions that run in my mind off the top of my head.

Edited because of YippySkippy's post.

I want to comment further based upon what she said. I come from a Jewish background. The Nazis used eugenics extensively and people were put into concentration camps based upon what the Nazis considered inferior. In the Nazis mind, Jewish people had certain traits the Nazis were trying to get rid of. The Nazis believed the blued eyed blonde person was of the superior person. What is the logical conclusion of abortion based upon undesirable characteristics?

I understand where YippySkippy is coming from as well and there is truth to what she says. Where and when does it all stop? How far should we go in ridding ourselves of what we consider imperfections? In fact, what is perfection?

We are dealing in complex issues of ethics, morality, and economic scarcity. How do we live our lives with nobility, truth and virtue and how do we teach our children to do so as well? How do we all support ourselves to do this and how do we teach our children to support themselves to do this in a noble and ethical manner?

Does any person intentionally do evil? What if some people believe that they're doing good but evil is the outcome? What is good and what is evil? Yippy has points and HisMom has points.

Reagan and Tipper O'Neil used to have heated debates. At the end of the day, they had no animosity between each other and they broke out the Scotch. Can we all do the same?

It isn't eugenics unless the decision is taken away from pregnant women. When it is pregnant women making the decision to abort or not, it is a personal choice generally made on a cost/benefit analysis (for those women who would consider it, excluding women who would not abort ever on principle). Part of the cost is how able the woman feels to raise the child and how she thinks the child will cope as an adult. Part of the benefit is how much she desires a child (an older woman who feels this is her "last chance" may have a higher desire and less likely to abort) and how she thinks the child will cope as an adult.

In the case of schizophrenia, it is entirely possible that some/many women would abort if given a definitive genetic test. It generally doesn't kick in till adulthood so wouldn't impact raising the child but would definately factor into how the child copes as an adult. The psychological cost of type 1 diabetes in terms of raising the child is not all that high (2 friends who are doing it describe it more as an aggravation and inconvenience but not debilitating. There also doesn't seem to be a community of parents stressing over the psychological toll) . The financial cost would be phenomenal if health insurance and government health programs didn't exist. So the continuing existence of type 1 diabetes even if there were a test probably depends on the continuing existence of a health services safety net. The example of left handed people is pure silly hyperbole since no parent has ever complained about the difficulties/costs nor is there any actual associated health care cost.

In the case of autism and schizophrenia there will probably be hesitation if nobody can figure out a way to match genes with presentation. If there is no way to differentiate the future inventor or artist from the future person who must be institutionalized after their parents' death, many women will be hesitant to abort. Others will have no hesitation. But in any case, it isn't eugenics if it's the woman's personal decision rather than a mandate.

I am pro-choice. Personally, if it was found that a child had Down Syndrome via an ultrasound, I wouldn't abort it. There's potential in that child. Same with autism. If it was Tay-Sachs--yes, I would abort it; the kid has a 4-year life span, if that much. A waste of medical resources.

Hi, cubedemon -- don't worry, we're cool. You're a good egg.

I'm Jewish too (chag sameach!) and I think one thing to keep in mind about the Nazi efforts to exterminate Jews was that they were rooted in Christian myth about Jews and the death of Christ. There's also a long, long European history of reviling the Jew (if you want to get really unhappy, go read Martin Luther on the subject of Jews). The older I get, the more it resembles to me a gang war: as far as those Christians were concerned, Jews and Christianity were inimical, because Jews refused to accept Judaism 2.0: the Church. Of course, Christians happily murdered each other, too. A lot of the history of Europe post-1500 is wars between Catholics and Protestant, and the massacres of different denominations of Protestants (look up some Mennonite history for more sadness).

The eugenics of the early 20th c was not exactly unChristian -- there was a strong element of building the perfect Christian soldier -- but there was also a good deal of industrial bloodlessness about it. On the other hand, without the money given by eugenics-supporters, we'd have almost no modern understanding of cell biology, biochemistry, disease processes, human development. Or we'd be far behind where we are now. The scientists doing that work pre-WWII were not eugenicists -- indeed many of them were Jewish -- but you nod and make polite noises if you want the science money so you can do your research.

I don't know how many people who aren't very young are actually concerned with living nobly.

About self: I don't know how many people actually have a very strong sense of self to begin with. I always have had, and it's blinded me to how fragile many people feel their sense of self to be. I think a lot of people wander around not knowing who they are. I don't think that's a basis for judging who should or should not have a gene therapy treatment to undo autism, though. I do, by the way, think it's mutable, just not easily mutable in most. Some people say they feel not themselves on psychoactive drugs; others say the drugs give them a sense of self they always felt was missing. Traumas and brain tumors can radically change personality.

As for what makes us us: Again, the older I get, the more content I am with an entirely materialist explanation. What makes us us is the atoms and molecules and tissues arranged in the way they're arranged. All else is just a function of that arrangement, those processes. Those physical things are so complex, beautiful, and lively that I find them a far richer and more satisfying explanation than stories about spirits and breaths in nostrils and special trees and clay and ribs, though I don't dismiss them as allegory.

There's a neuroscientist at MIT who's been doing a lot of TED talks in the last few years about "the connectome", which is the set of neural connections in one person. Those connections are plastic -- neurons grow, connect, disconnect, die. So you today, cubedemon, are likely a different person than you were at age 5. Not entirely, but substantially. And despite a strong sense of self that goes back as far as I can recall, I'm certainly a different person now than I was at 12, or 8. One day the bloodflow will stop, the oxygen levels will drop, the neurons will die, and this particular connectome will be no more. All gone. A nice local accident generated by the way the universe's physics have gone, that's good enough for me. A few people will remember what I was like, and then their connectomes will go too, and then maybe I'm a few words in a book or on a wall with a litte memory light next to them. And if that isn't Jewish I don't know what is.