Do all parents with severe ASD children want a cure?

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Right. I said the above about the skills required to live independently because, in fact, I know several adults who I would say only have the said skills and are living independently. I think a lot of it comes down to the services we have here in Toronto. I guess I'm biased by my locale.

Yeah, I can see what you're saying. I can't respond further because there are people trying to talk to me right now. I will think about this and respond in full later.

Have you actually been around people who have been institutionalized ? Have you conversed with them and their families on what they want for themselves / their loved ones ? Has the institutionalized individual with autism been able to communicate to you that they are, indeed, happy ?

I ask because I happen to work with people who have themselves worked within an institutional setting. Some are former group home managers and directors. Others have had loved ones placed in such a setting. And their feedback is very different than yours. Very few people in an institution for the developmentally disabled can actually communicate and rarely are they presumed "happy". An institution / group home is normally a placement of last resort. It is when the family realizes that they cannot cope with the demands of caring for the disabled individual anymore. It is a painful, heart-breaking, gut-wrenching decision, I would imagine, and while they would be free from the daily grind of caring for a totally helpless, vulnerable and possibly aggressive member of the family, they would instead be saddled with the guilt and depression of having "given up" on a loved one. I know this because I know some of these families personally.

Also, as you admit, if a child learns "basic self care", some communication and gains some academic skills, then they won't be institutionalized, which, in turn, means that the people who DO end up in institutions lack even basic self help / self care skills, CANNOT communicate (which begs the question then of how you know that they are happy and would not want to be cured !) and have no academic skills. Without a cure, therefore, they cannot survive in the "real world" and are doomed to spend the rest of their natural lives within the walls of these "prisons" for no fault of theirs, except that they are not made to function in a high competitive and demanding world.

If KingdomOfRafs is functional to the point that she can participate in this forum, and even mentors others with autism, she is NOT representative of the souls who suffer in an institution. I think denying them the right to live their life with dignity is inhuman - these people may not be able to communicate what they want, but no parent would want their child to be condemned to a life in an institution. If a cure is what will help them escape that fate, then as a Mom, I say, HURRY ! ! Bring it on !

Further recommended reading : Straight from the horse's mouth, from someone actually in the trenches, fighting with the havoc autism ravaged in their lives :

http://blogs.chicagotribune.com/news_co ... agedy.html

"There are no upsides to autism".

First, the USA and the western world is just a fraction of the entire world.

Second, why do you believe a competitive and demanding world is worth functioning in especially if this real world is filled with so much evil and corruption? If life is truthfully unfair, one is not supposed to fight to make things better and if one can't pursue truth and virtue then what is the point of living whatsoever? If one has to pretend to be something he is not then how can one be honest with oneself and others?

Third, based upon people's beliefs and attitudes in this real world it seems like maybe the institution would be the best place. I mean he would get three hots and a cot would he not?

Fourth, he is free. He is free from having to pretend to be something he is not and having to be dishonest with himself and others? He doesn't have to meet any complex social standards. You state there are no advantages to autism. Shoot, you have one right here. He may be confined within the walls of a cell but he is free from having to put forth pretenses and dishonesties. I say God, life or whatnot has given him an awesome life. I envy this kid. He gets free 3 hot meals, free room and board, and freedom. What more could a guy ask for?

Fifth, I will let Dr. Gregory House from the show House speak



Sixth, I'm just pissed off right now. We have Simon Baron-Cohen who states we have less empathy than sociopaths and we have women on aspartners at Delphi who hate us to our very core. I'm just sick and tired of NTs stating how horrible we are, how we're selfish, etc. I'm just sick of it and the BS needs to stop.

Dude / dudette, seriously, take a chill pill. I don't know where all this is coming from, but for what it is worth, I have gotten the best and the most effective responses on how to help my son from the adult autistics on the general discussion forum. So.. If you are pissed off, go spew at whoever pissed you off, not at me. I don't think that the autistic people I have interacted with here have been horrible or selfish at all.

Seriously, relax.

I'm going to leave wrongplanet for a few days. Sorry! Just been a rough few days. I need to get back to equilibrium.

I hope everything is OK, Cubedemon.

Amniocentesis doesn't detect heart problems. It detects chromosome abnormalities.

High-definition ultrasound can detect heart problems. And it carries virtually no risks.

Most chromosome abnormalities, it won't really help to know in advance because only a subset of the kids have heart problems and they can have a wide range of heart problems. (DS is like this, only about 30% have heart problems, and there's a bunch of different ones.) Plus the treatment is the same for the same heart problem, regardless of the underlying cause. As for other abnormalities, it's rare to find one single abnormality that's present in 100% (or even over 80%) of kids with the same chromosome disorder.

If you want to know how to help your child, don't get amniocentesis. Get ultrasounds. You can find out about the chromosomes at birth, with a lot less risk to your child. Only reason to test before birth is so you have the option to abort.

Yeah, I was corrected before about that. I read amnio as all diagnostic tests in my brain, for whatever reason. I agree.

There's your problem - the lack of a safety net.

If we find a cure, it won't work on all autistics - just the small subset who have a particular underlying mechanism causing their autism. Just like the 'cures' for cancer typically only work on certain kinds of cancer. (And I would like to point out that just because I'm using a cancer analogy does not mean autism is in any way comparable to cancer. Cancer kills.) So at best, we'd be helping out only a small subset of a subset of the population. And many autistics feel that this comes at the price of losing something important to their identity.

In contrast, improving educational services, workplace accommodations and supported living arrangements will help all autistics. And not only that, it'll help cognitively disabled people, people with mental illnesses. people with brain injuries, strokes or dementia, and even some people who have disabilities that don't affect the brain in any way. Plus, it helps society as a whole by maintaining diversity while allowing people to reach their full potential.

If you want to build your child a good future, don't pour your hope into trying to cure them. Instead, work on building them a community.

Oh, and by the way, despite the rhetoric, educational interventions such as ABA are not a cure. You're just teaching the child skills. It doesn't make them any less autistic to teach them skills. And if you keep that in mind, you can focus on teaching them useful skills, instead of wasting time on normal-looking behaviour that doesn't do them any good. (I know a boy who has a 5-word vocabulary in sign language, no doubt taught with a lot of effort and time. Two of those words are 'please' and 'thank you'. Priorities, anyone?)

Oh, and for the OP:

Don't worry about it. The people you meet online are the vocal minority.

Most of the parents I've met seem not to have really thought about curing their child, or at least it never came up in conversation. And I met a mom of a nonverbal 10 year old in diapers who didn't want him cured, though she did want him more functional and better behaved. (She actually made me uncomfortable at first because when we first met she went on and on about how disabled he was, but as I got to know her better, I realized this was a defence mechanism to stop me criticizing him and it wasn't her real opinion.)

If you're doing good work with their kids, they don't care if you want to cure them or just help them function. And if you run into a disagreement, it's best resolved by talking about practical concerns, not idealogical ones. (Instead of 'I think it's wrong to force autistics to stop stimming', say 'I find stimming often serves a purpose, and the kid functions better if we don't interfere'.)

There are a few parents who are really die-hard and vocal about a cure, but unless you're working for DAN or something, most of the parents you meet won't be like that.

Whoa nelly.

The mere thought that someone might abort a child like my daughter on the basis of a laboratory test makes me sick to my stomach.

Do you even know how those tests work? You state later that they will categorize different sub types yadda yadda... No. They won't. Tests like that are black and white (or at least they will be at first and for a looong time the technology to do such a thing in mass and wuickly isn't there, but a quick and dirty cheap assay? one strip of genes. Maybe two.). The part in a later post where you talk about sub types, that is decades away. However finding one or two "on-y off-y" type genes is probably pretty close OR even the use of imaging between 20-30 weeks could do it as well since now they know it has to do with the way the brain folds in on itself and differentiates during that time frame. It's not going to be a sliding scale, it will be a black and white yes or no answer and then parents will go have an abortion based off of that information. Which means that they would be aborting kids who could potentially be contributors to society. My daughter has her hang ups but she is also super duper smart, if we do right by her and she works hard, that kid could cure cancer some day. Or, if I didn't know better, she could be bio waste.

Actually I bet that's not how it'll be. We already know that multiple genes are implicated in autism, and it's a matter of time before correlations are drawn between expression of various genes and severity of autism. Then the parents get to decide what they can and want to handle, given risks.

Nobody's going to offer a diagnostic test that happens after 20 weeks, probably not after the first trimester, because the politics would be explosive.

Before asking the question put yourself in the shoe's of the parent rather than looking through your own eyes. In this respect most Aspies are not much better than NTs. Many seem to impose their own views or biases on kids or adults currently labelled as "low functioning".

Getting back to your question, most parents of severely autistic kids are mostly worried about what will happen to their child/ren when they are no longer around and the child/ren are left to fend for themselves. I want my daughter to be able to have sufficient social skills to be able to survive without relying on others. If a miracle drug or therapy was to arise that allowed her to be NT then I wouldn't hesitate.

BTW please don't debate these type of topics with parents of severely autistic kids if you are not in our shoes. You really are not in a position to tell us what how we should react to things like cures.

Er, let's not get judgy. It's actually a smart thing to do, if you can afford it. Moms are people too, and most mothers work very long hours. Having a regular break in which you get to restore your sense of self and have a bit of recreation, exercise, or a nap -- I'd make it a right of every mother, if I could.

Most moms don't want to use once-and-done babysitters because it can be rough on the kids to be left with caregivers they don't know well -- a lot of the time moms will spend with these places has to do with establishing bonds between caregivers and child.

Oh no, now you are going to be deemed JEALOUS of Aspies and other high functioning autistics... You dun messed up now, CyberDad ! !

You know, it's interesting -- the argument keeps circling past this point to "then change the society so parents don't have to worry about these things!" Apart from the fact that this doesn't address how hard raising and caring for severely autistic kids can be on the families, it seems to me there's a real lack of appreciation for how resistant cultures are to change. "It'd be reasonable or kind to do X" doesn't mean that X has any chance of happening. Nor does there seem to be any sense of cost, the fact that someone, or many someones, must pay for therapies and supports, and that the budgets really aren't limitless. That's why there's been such emphasis the last decade on understanding and treating schizophrenia -- it's a massively expensive illness, so expensive that states have effectively stopped paying for it. They wait for people to wind up in prison instead.

I think it's much more likely that genetic screens and treatments will be developed than it is that the US, at any rate, will change to the point where parents can rest easy, knowing that after they die the state will take good care of their severely autistic child.