Do all parents with severe ASD children want a cure?

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I had this conversation with my wife and we came to the same conclusion. Eugenics is an ideology aimed at creating a superior race. Those individual choices are aimed at maximizing cost-benefit for oneself and ones child. In the end, though the effects may be similar, and so the difference between that and eugenics may become a semantic one.

I'm not saying this to condemn people who do amnios or some imagined future ASD test. I just feel conflicted and uncomfortable about the whole issue. Just like abortion; I don't want to infringe on people's choices, but when thinking about it in my own life or people that I care for, it strikes me as very sad and disturbing. Somehow when that abortion is based on fetal characteristics, it takes on more life in my mind. As if an abortion due to financial concerns, ignores the possibility that the fetus had, whereas this type of abortion imagines the future child and then pre-emptively kills that child. I know that's just an illusion, and that both decisions are two sides of the same coin (which can also be important to save women's lives or protect them from having a child after being raped).

I still respect the decision, and people's rights to make it, because I wouldn't impose the choice of parenting a child with extreme needs on anyone (not that all people with AS have extreme needs, but many do). Then I imagine a world with no "imperfections" and it makes me concerned and sad. I imagine that for the few people who choose not to follow such a path, there may be awkward exchanges in the grocery store when someone looks at a misbehaving kid with ASD and rather than ignorantly chide the parent for not having control of their kid (as happens so often these days), they pompously ask "why didn't you test for him and have him aborted?" If such tests were possible, what would happen to the few stragglers, who either didn't get tested, or were missed by the test (since ASD is so multifaceted you can be certain that at least in early iterations, such a test would miss many people).
I imagine they would find a world that is much more hostile to them (being a smaller minority). Then again, I don't see this issue coming up in the way people with DS are treated now...so maybe it wouldn't be that big a change.

I don't see a way to completely fall on either side of this issue...which leaves people like me stuck in this uneasy space.

Thanks! So are you. When I do debate you on things and ask questions I'm really trying to discover a better truth(s) behind things. The truth is I second guess myself on many things so when I am questioning and debating others I'm debating and questioning myself as well. I do see where you are coming from on some things.



Back at ya! Just as a side note. My great-grandparents came from what was the Yugoslavian area from a village I believe was called Eloi. They fled to escape persecution. My Grandpa Joe went to elementary school and in third grade had major problems understanding what the teacher was teaching because he mostly spoke Yiddish. He dropped out, learned English himself and when he had his kids (my father and my two uncles) he taught them English and never allowed Yiddish to be spoken in the household ever again. A certain part of what made us who we are was lost. Because of this, I do not know Yiddish and I had to look up what chag sameach meant.



I understand.



Jews do have issues with Christ being the messiah. It is similar to some of the issues the Pharisees had.



I see.



I don't either. What do you consider young by the way?



Yeah, I have read various texts that seem to present this as true.



I guess I'm going to the more opposite direction. To me, the materialist explanation is necessary but is not sufficient enough for me. What you describe is a biological machine. There is truth to it but to me we as human beings are so much more. To me, we're are part spirit as well. I can't prove this with empirical evidence; I just simply feel it. It is intuition. We have the ability to do profound good or profound evil. We can create works of art that can engage us to the inner depths of our soul and being. To think of ourselves as nothing but biological machines and only think in the pure sensate way will be our own undoing as human beings. We're not just cogs in a greater machine we're so much more. To think in this way, IMHO, is to lose what gives us our humanity and to lose Eros(love) for one another.

http://satyagraha.wordpress.com/2010/08 ... modernity/



I buy this as well. This proves that there is no true, impermeable, static self. Buddhism is correct on this.

I think "cog in a greater machine" implies purpose to a machine, which...you know, I don't see need for that either.

Let me give you an example of how biological machinery and art are not mutually exclusive.

I have unusual facility with language. I didn't do anything for that, just have it. Taught myself to read at two, was writing little books by six, have managed to survive despite all other handicaps largely because most people don't, as it turns out, write well or easily, and they'll pay me to do it for them. Or -- and I have misgivings about this -- pay me to teach them how to do a thing they don't come by naturally. For me, words leap up and attach themselves to any thing, idea, intimation, with great alacrity, and they do it in a way that's highly allusive, the unusual but apt connection that makes poetry. I do nothing at all to make this happen; it just happens.

Several years ago I had an injury that left me in chronic disabling pain, and was prescribed a tricyclic antidepressant, at a very low dose, as a pain modality. It worked. It worked, as far as I could make out, by functioning as a literal anaesthetic: I felt less. The volume was turned down on all my experience -- which also made me less anxious, not that I'd been aware before of having been tightly wound -- but it also did something else, something interesting. It turned me into a lousy writer. I forgot how poetry works. The words did not leap up. I was able to describe things in a literal, workmanlike fashion -- the sentences were okay, I sounded quite reasonable, but the writing was plodding and didn't do anything particularly interesting. I knew I'd done better before, but honestly could not remember how to do like I'd done: poetry was gone. I also knew that this was something I ought to have been deeply upset about, but -- feeling everything rather less than I usually did -- I found it hard to care very intensely.

The active ingredient in the drug is a molecule; it has well-understood effects on neural molecules controlling cell communication. (It may have others yet unknown.) It's a switch, you see? Switch off: poetry. Switch on: no poetry. Why should poetry have developed at all? Who knows. Why feathers, why cats' slinkiness? These things wink in and out of existence.

Some machines are very beautifully complex. You should have a look sometime at MIT's AI lab and the robots they've built there. It's remarkable how the right algorithm gives the belief that you're looking at life, intelligence, emotion. Or maybe it's not remarkable; maybe it's very ordinary, just not a way in which we're accustomed to thinking about ourselves. But Asimov knew all that a long time ago, that old rabbi.

Hitler was not interested in advancing Christianity. He needed a scapegoat for Germany's economic problems, and the existing racism against Jews allowed him to use them for that purpose. The Holocaust was about ethnic cleansing rather than religious fervor.

I don't believe they're mutually exclusive.



Looking at my posts overtime and my blog what do you think of the way I write? Can you give me constructive feedback?



Wow, I am sorry for loss of certain abilities and your pain.



Well, what is existence?



I would love to look. Asimov also wrote about some of the dangers of reliance on technology and where logic could lead. If we create synthetic life do we take our place amongst the gods? Are we like Prometheus who stole fire from the gods themselves? We must tread carefully so we shall not get burned. Can a machine and technology do something or not do something because it is right?

How do we take care to not be like Icarus and fly to close to the sun?

cubedemon - reread the robot stories, he suggests answers to a lot of your questions there, particularly in the Stephen Byerley stories. As for the loss of poetry -- like I said, the molecule was a switch, right? Art on, art off. I got off the drugs, my writing went right back to itself. The only unfortunate thing about it's that I can't risk using those things again if depressed, because at this point my livelihood depends on the ability to write well.

Not a bad idea! I shall do that.

While I get where you are coming from, I still think this isn't for ANYONE (aside from the parents to have a say on), including the rude onlookers at grocery stores who chide parents for not aborting their autistic child. I think this is a very personal choice, and two sets of parents parenting very similarly affected chilren may take very different decisions. There is no right or wrong answer, it is what makes each person is individually comfortable with, and feels capable of.

For instance, had had I more $$$, could afford to pay for more private care, had a large family so that I could reasonably believe that there would be at least two or three people who would step up and SHARE the responsibility of my son after we are gone, then, I, too, may feel a bit differently. But that isn't my reality. I have limited $$ and can only ever expect that my daughter will look out for her brother after our time. I think of the burden this may be on her - especially if she is raising her own family - and there is a knot in my stomach, because now, I have TWO children in potential trouble after my time. And what if, God Forbid, (I don't even want to type this for fear that some entity somewhere is listening and in a wish-fulfilling mode) - but if she had a child with challenges, too ? How will she ever cope ?

I look at it from my personal angle, given my personal circumstances and given my restrictions, and abortion makes total sense. But someone else with the same child but different circumstances may not bat an eyelid at all. It all depends, there is no black and white, and no right or wrong.

The decision to abort or to keep a disabled child is HIGHLY circumstantial and HIGHLY personal. JMHO.

Last edited by HisMom on 15 Apr 2014, 4:11 pm, edited 1 time in total.

I love Dr. House.

However, I don't love the games that he plays with people's heads.

He is a keen observer of what makes people tick, and how to predict their future behavior on those observations. I am terrible at making predictions about people. Too many unknown variables and untold secrets, simply too many permutations to draw conclusions from. I guess I'm just not smart enough to be a Dr. House. But I do like the way he can solve medical mysteries. In my opinion, medical mysteries/pathogens/genetic diseases are more transparent than human beings are.

have only just come across this now.
am personaly respectable of everyone on this forum and expect the same respect back so please less of that judgemental abuse; am low functioning, have two-to-one support twenty four hours a day,both a waking night and sleep in staff to self severe communication needs, incontinent,severe challenging behavior,am not able to write, go to a specialist college for people with LFA,am under the mental capacity act in the UK due to being low functioning and last september was sectioned for four months in a intelectual disability hospital.

am also supported by the social services intelectual disability team.... have suffered severe abuse; sexual,physical,mental and sensory and am suffering every day from PTSD as a result of it, am also diagnosed with severe lifelong reactive attachment disorder as a result of neglect and abuse due to parents not knowing what to do with self,so how dare anyone say am not representative of people who live in institutions when have spent a bloody decade in them,get rid of that horrible attitude,am severely disabled but at least am not forcing own views on other people and trying to put others down for not fitting outdated stereotypes.

am not a mentor for people with autism, am on the service user panel as an interviewer for the UK NHS social services intelectual disability team,have got a staff who helps self to understand the language that people being interviewed use and use a laptop to communicate questions across to them.
am also a activist and help the intelectual disability team with understanding how to support those of us with severe autism, as well as ID,am also going to be used as a test subject at a hospital soon to train them on how to deal with those of us who have ID and autism.

am not profoundly autistic,or fully low functioning,but both low and high functioning are spectrums,and so is severe classic autism-we are all different.
am never going to be the type to sit around feeling sorry for self and
believe we deserve a right to live just like anyone else,if are not capable of looking after an autistic child then put them into foster care.


so please, do the autistic community a favour and get some manners or read the rules as am passing that comment have quoted to the mods.

KoR,

Neilson is all right.

I was responding to this post that you are happy in an institution and mentor other people. Are you happy being in an institution ?



And now you YOURSELF state that you are not fully low functioning or profoundly autistic ! That was EXACTLY my point - that if you are able to communicate (not talk, but communicate) and if you able to navigate this forum and even advocate for your self, then you aren't the same category as the individuals I am talking about. The folks who are PROFOUNDLY AUTISTIC and LACK BASIC SELF HELP SKILLS AND HAVE NO COMMUNICATIONS SKILLS. The ones referred to by the article that I posted, written by a father with such a child.

Of course you deserve to live, did I say you didn't ?

And as for passing this comment on to the mods, I have received a pm from someone named Cornflakes who insists that I apologize to you, and stop being in judgment of you, when all I was doing was making a simple point clarifying the exact profile of the individuals I was talking about - which is not you, btw. Stating that does not mean I am judgmental or dismissive of you.

This is a parent forum. I have a problem with non-parents coming in and talking about what parents should and should not do, when the posters HAVE NO CLUE what it means to actually live a day in the shoes of a parent RAISING A PROFOUNDLY DISABLED CHILD. I also have a problem with people stating that the brains of an LFA are different than the brains of a HFA. This was a comment made on the "Jerk Parents in support groups" thread. Well, if an HFA's brain is different than an LFA's brain, then HFAs have NO RIGHT to talk about whether an LFA should take a cure or not. They can't have it both ways. Please, note, KOR, I am not addressing this paragraph to you, and I am not referring to you as an HFA because you have clarified your struggles and your exact profile here. Not that HFAs don't struggle, but given how their brains are allegedly different and all...

I think this whole thread was started with an intent to TROLL, knowing fully well that there ARE parents of PROFOUNDLY AUTISTIC CHILDREN here who are desperate for even meager progress. Then, when parents rose to the bait, there were a bunch of GOTCHAS.

I think everyone should read the posting guidelines here - I am also going to report this thread and some of the rude, judgmental comments here to the mods. People should do parents with more challenged children (the ones who lack basic skills and are totally non communicative) a FAVOR and stop telling them and their parents what they should do and what they deserve. Judgment calls go both ways.

Why do NTs think we plan out and execute complex devious schemes including possible conspiracies whenever an autist disagress? The women on ASpartners do this as well. They seem to think their husbands do the most complex of schemes against them with malicious intent? What is the reason behind this thinking?

how about start speaking with less agression and more respect like are getting in return as that attitude is seriously making a mockery of what this board is for and its also giving a bad example of our NT parents of autistic children who come to us for understanding and support;they dont come here to degrade a part of the spectrum because they cant cope;theres plenty of parent only forums with rant sections for that,wrong planet is a peer support forum with the majority of people being on the autistic spectrum or suspecting it and WP isnt here so people can come on and dismiss peoples autism/functioning/personal circumstances and act like their child is a representation of the entire severe and profound spectrums, we are all different and some of us have specialist very high support levels which gives us a higher quality of life.

am both severely autistic and LF,am moderately to severely intelectualy disabled hence am still in the LF bracket;very few people with severe autism are fully low functioning, fully low functioning is an autistic who has a severe to profound intelectual disability,however a profound ID doesnt make them non functioning, if had bothered to read the post of mine woud have seen that had wrote about two profoundly autistic & ID adults [both in their twenties] that lived with in a previous facility who unlike self are able to attend a mainstream college and also able to have a part time job so please stop portraying the severe or profound spectrums as non functional burdens because the people that personaly know contribute to society far more than some NTs do and its an absolute disgrace to see us as burdens,if have had enough then get him adopted.

again, unless are someone who am familiar with,how exactly do know personal circumstances? is it ok if do the same back and make some really personal judgements without knowing who are?
however am better than that and wont be doing it.

am low functioning with inability to do basic life or personal skills for self, and have very high support needs twenty four seven, however am perfectly ok with the life have got-am a special olympics athlete own a motability car and get to go on days out as well as small trips out every day,and its great contributing to society in the form of helping to train staff on interacting with those of us who have LFA as well as helping the social services ID team.
have got a higher quality of life now in the facility am living in,if are actualy genuinely a parent of an autistic child and want to get an idea how just one person with LFA is as an adult woud suggest reading the blog of mine instead of making offensive judgements.

as for cornflake,he is a moderator.

I will try this again.

I do not know you and you do not know me.

The OP came into the thread, supposedly asking a question - do all parents want a cure ? The answer is either a YES OR a NO. I am honest enough to say YES,

Thing is, I realized in hindsight, that she wasn't looking for straight answers but for parents who wanted a cure to jump through hoops to explain why they would need a cure when the spectrum is so grand and all. It all went rapidly downhill from there.

I have never had any interaction of ANY sort with you before. She, however, pointed out that you lived in an institution and that you were happy. My rejoinder was that anyone who is able to come online and communicate is NOT representative of the population that I amreferring to - namely the ones who CANNOT communicate AT ALL, lack even basic self help skills and need 24/7. Now, I appreciate the fact that despite your challenges you have learned to communicate and are capable of self advocacy. But the population I was referring to is even more lower functioning than you are. Pointing this out is not an insult to you, at all. It is just a fact. Now, this also does not undermine the severity of your needs or your challenges.

As for how I am a poor representative of NT parents with a severely affected child, you are entitled to your opinion as I am. If you want to get insulted because I pointed out that I was referring to a community of autistics that you do not belong to, I cannot help it, as that was never my intention.

I will read your blog, of course, but I will still say that I was referring to individuals who completely lacked ANY ability to communicate and who are totally at the mercy of caregivers in an institution (who may not always be angels and saints). Telling their parents that they should not seek a cure is incredibly hurtful. UNBELIEVABLE.

I also bolded the above statements because that was my point. Some portions of this forum may be peer support, but this subsection is parent support. So how about folks quit coming here, and posting judgment calls on how we should view our children's struggles and challenges ? And yes, every person is an individual, so no one has the right to tell another individual just how grand their life is, because that is how they perceive their own life to be. As I said, it goes both ways. Respect & understanding are not one-way streets.

Last edited by HisMom on 16 Apr 2014, 12:29 pm, edited 2 times in total.

The OP who started this thread posted a query regarding the field in which she would like to work. I don't think it was a troll/gotcha post as the previous poster suspects because I have seen her post before. I think she genuinely wants an answer to her question as was wondering what the answers would be.

The problem is this question brings out some extremely hot-button type issues with people. It is the very nature of the topic.

1) Parents are sometimes going to offend on a thread like this b/c talking about parenting difficulties sometimes make the adult/young adult autistic people on here feel like they are being insulted because they feel -they- are transitively being described as problems.

2)The parents sometimes feel they cannot talk frankly because of this, and they feel their motives/intents are being questioned.

That is even before other even more controversial things like cures (the original topic) and abortion come into play.

I don't know why the previous poster suspects trolling but I don't think that a simple suspicion like that is the same as people who pathologically blame everything on aspies. The reason for the supposed byzantine mechanics aspies are accused of on there is b/c that is the only way they can put 100% blame on aspies. That is the whole point of that site.

I would not generalize anything about NTs from that awful site. That would be like if black people thought reading a KKK forum would teach them about white people. It would not be fair in either case.