Do all parents with severe ASD children want a cure?

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I talked about this with my mum and this is mostly what she said (some verbatim, some in my own words) but I agree: A cure that would actually eradicate autism from the world, like re-wiring children's brains at birth is such a far-off in the future/speculative/hypothetical given where science is now that it falls into the realm of science fiction. The best thing for the current generation and probably next couple generations of autistic children and adults is to focus on and devote resources to making therapies, accommodations and supports available for autistic people.

There was a thread on WP a while back about a hypothetical pill like the ADHD meds that could greatly reduce or eliminate ASD symptoms while the medication was in their system. This is very unlikely to ever happen because meds can alter brain chemistry (neurotransmitters) but not structure or wiring and also there may be many types of autism etc. However, if such a pill existed I would be very happy and would try it. If it could make me understand social signals easily and intuitively and I could understand how to interact with others and not have my non-verbal communication and mannerism creep people out or annoy people that would be brilliant.I could be on it while interviewing for a job and at work and then with that type of medication I could go off of it when I got home and have my good old detail oriented, unsocial autistic brain back so I could play Where's Waldo and find him super-fast.

*My previous post was not about a hypothetical prevention of autism from developing but about a hypothetical true cure, re-wiring children's brains or a treatment/medication that eliminated symptoms in existing persons with the disorder. This is different.

It might meet the technical definition of Eugenics but it's not as evil as the early 20th century eugenics programs. It doesn't even compare. From the Wiki article:


The methods of implementing eugenics varied by country; however, some of the early 20th century methods involved identifying and classifying individuals and their families, including the poor, mentally ill, blind, deaf, developmentally disabled, promiscuous women, homosexuals, and racial groups (such as the Roma and Jews in Nazi Germany) as "degenerate" or "unfit", the segregation or institutionalization of such individuals and groups, their sterilization, euthanasia, and their mass murder.[12] The practice of euthanasia was carried out on hospital patients in the Aktion T4 centers such as Hartheim Castle.

I agree with Mathgirl that it should be a personal choice and scientific progress shouldn't stop because there are potential ethical quandaries with what might be developed as a result of such progress.

However, one potential problem with it is that not everyone would abort their autistic fetuses and so there would be autistic people in the world ,only much fewer of them but maybe that would lead to fewer resources devoted to support and accommodation for the autistic people who did exist. That would be very sad.

*ETA-I discussed this with my mum too and some were her thoughts -just to give credit where it's due-it seems like cheating otherwise, even though this is just an internet forum.

I agree with that.

However, my mind can't help but follow what it sees as the logical next step and realize that there are people out their who judge the life of their fetus to be "not worth living" or "not worth raising" simply because they decide they do not want to have them. I don't see how that is less tragic. Whatever the "reason"--genetic makeup, lack of resources, existing circumstances, simple selfishness--to me (and this may be my shadowy black-and-white thinking rising up) they are all equally tragic. No one is more tragic than the other. I don't see it as one life being valued less because of a genetic difference. I see it as all of those lives being valued less. For whatever reason.

Disclaimer: clearly I am not in favor of abortion, but I do not believe that it is my place to force my beliefs on others, so please do not attack me. Although you may not agree with my beliefs, I am entitled to have them, the same as others are entitled to have theirs.

Personally, although I hope it never comes to pass, I imagine it will. When I look at my two beautiful children and realize they may not have passed someone's screen, it makes me very, very sad.

But the reality is, there will always be people out there who opt not to screen because they simply do not care. I was never screened for either kid, despite my "advanced maternal age" because I really didn't care if they had DS or not. So even if prenatal screening for autism became a possibility, it would not eradicate autism. It would not "eugenically cleanse" the population. Emile, I didn't know about the 90% rate you mentioned, but I think it is important to realize that a large percentage of women (don't know the percent) opt not to screen because they don't care. And even among those who screen, not all do it with the intent to abort. Some do it because they feel they need time to adjust before the baby's birth. I see no reason why it would be different with autism.

I agree with all of this, including the difference between that initial logical and liberal approach, that it's not my place to force my choices on others...that's why I used the word disturbing, because it's not that I disagree with people's rights to do this on principle, but it does pull an emotional reaction from me...much like you mentioned.

Similarly, it really bothers me that in China and India (and probably other places) female fetuses are often aborted. This has become such an issue that people in China have started to import brides from other Asian countries, because the ratio of men to women is so off-balance. I guess it represents a societal view that a whole class of people is somehow worth less than others - and that bothers me.

That part about screening is true - I was going to throw it in as a disclaimer, but opted out to streamline my post before. The test to see if your child has DS involves sticking a long needle through the belly and into the uterus. It's not without risk, and the only benefit is that you can determine whether you'd want to abort the fetus due to DS. So yes, if someone chooses that test, it's because they're already considering that option. Still that number always bugged me.

Yet another pedantic quibble, but there are some heart problems that can be detected and operated for in utero. I presume that there are other conditions that could be lifesaving to know about in advance.

Edited to add: Scratch that. That is true of sonograms not amnio. I stand corrected.

Last edited by ASDMommyASDKid on 14 Apr 2014, 9:55 am, edited 1 time in total.

^fair enough, I stand corrected.

I never had to that done to me when being screened for any birth defects. This pregnancy I didn't want any done because no point in it. If I am not going to have an abortion, why get tested? Plus wast of money if I have to pay for some of my appointments with my Medicare.

The diagnostic tests that get done can vary based on your family medical history. If you have certain risk factors including "advanced maternal age." personal medical history or family medical history, you can get referred to a specialist in that sort of thing. It is not standard care to take all possibilities into account unless the probabilities reach a certain point based on the data they have. It does not contradict the statistical point made by Emile. I brought it up only because I am a pedantic kind of person, and I just felt that it need to be said that not all diagnostic tests are done with the idea that abortion would be the natural result of a positive result.

Also, some people who have sonograms don't even think about what they would do if a measurement/test indicated a possible issue. This care is included in many insurance plans, and a lot of people like to maximize the number of times they get to "see" their future baby. People often love to share the sonogram pics, too. They tape them to their monitors, post them on Facebook, and email them to people.

At the time I was pregnant, the only issues an amnio could find that a sonogram could not were genetic ones like Downs. Defects like a heart condition would be found in the sonogram, not the amnio. The amnio was recommended to me solely because of the Downs risk. Lol, we are somewhat pedantic. But I'm also not sure if any of us are ever given perfect information, and I know today is not 17 years ago.


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Yeah, sorry. If I am going

If I am going to call people out pedantically, I can be called out too. I read amnio and my brain read it as referring to all diagnostic testing. My bad.

Sorry.

I just want to say that Tarantella64 said EVERYTHING that I have ever thought or would have wanted to say, except that s/he was far more eloquent and to-the-point than I could ever be.

Chronologically, I would be considered "middle aged". But in the past 2 years, I have aged to the point that I now have the health of an average 60-year-old. The stress & the depression caused my diabetes to worsen, my BP to become sky high, and my hair to fall out IN BUNCHES. I am also developing rheumatoid arthritis. The works.

The effect of my son's delays and autism on my family have been profound. We lost our shirts trying to get him the help he needed. I hardly even spend any time with my older child and my marriage has been severely strained because my husband & I are still working through different stages of grief (he only just came out of denial !)

If a cure was to be found, I would cut the queue and race to the head of it. And I do mean a cure, not just an improvement in functionality. Tarantella spelled out my very nightmares - abusive group homes, no one to advocate for him after we are gone (I don't want my daughter to be burdened with his care) and him wasting away in some dark room tied to a chair somewhere. And then there is the here and the now, when I long to connect with my baby and yearn for the day I can.

And, btw, even with many hours of therapy a week, it still isn't like "day care". I have come across therapists who slack off and text when they should be working with your child. And the fact that my son can't tell me worked in their favor. The first one acted all concerned and unprofessional, as long as I was in the room, so I would never have known about the texting if I hadn't unexpectedly walked into his therapy room and found her texting away. She immediately claimed to be texting her boss. I confirmed with the "boss" the same day that no texts had been received from her, and she was promptly "let go" (most likely, I was not the only one complaining !)

The other therapist was a rookie who was let off with a warning, after she profusely apologized for texting, but she still showed up for sessions with nails a foot long, and then wondered why my son screamed when she was doing full physical prompts ! UGH !

I would have never had to deal with these people if he had been NT.

I know this is going to be an unpopular opinion here at WP, but it is mine and I take the liberty of expressing it.

Interesting some people would see this as daycare. I have seen people online say parents use schools as a daycare and I had that same assumption about kids who have profounded low IQ's I thought parents just sent their kids there to get them out of the way so they can have a break from them for six hours because it's so much work having to take care of a child who has a mind of a six month old let's say because you have to do everything for them. But now I think they use it for free therapy when parents were saying on Babycenter they give them speech therapy and occupational therapy and try and teach them what they are capable of that babies would be able to learn.

I don't understand what you mean by "free therapy" ? Do you mean services offered by the school districts ? If so, then of course we want all the "free therapy" we can get, because the more work - HIGH QUALITY WORK, NOT BABYSITTING - that goes into the child, the better that child's long term prognosis.

I also don't think that IQ is static. I was talking to a top expert on Verbal Behavior a few weeks ago. This person had begun their career by working with children in institutions / group homes several decades ago. They told me that many of these children showed improvements the longer they were in therapy and the more intensive the intervention offered to them. Of course, some of the children were very lucky to have strong advocates, even though their caregivers were paid caregivers and not their own family. If you look at IQ as a bell curve, then this person's experience was that at least 50% of the kids tended to make movements towards the mean of the curve (and regression to the mean is "normal", right ?)

There were others who progressed beyond the mean and ended up one or two SDs above. But there were still others - who despite intense therapy - stayed where they were. These children usually had a comorbid condition and were rarely just "simply" autistic. The hard thing is that a parent never knows their own child's prognosis, because none of the experts have crystal balls and can truly say for sure where the child will end up years after high quality intervention.

Anyway, that said, I doubt that anyone - even parents with a profoundly disabled child - would look at schools or therapy as "baby sitting" to get their kids out of the way ! They are probably looking for help on improving their child's functionality. If folks want "free babysitting" they should go to babysitters, not schools and intervention centers. A "break" is what respite services are offered for.

So what do you think of adult self-advocates, some of whom received early intervention, who appreciate the fact that they have autism (despite the challenges) and wouldn't want to have it cured? If your son ever communicated to you that he would not want to be cured, would you take that into account and respect that? If your son learns basic self-care skills, some communication, and bssic academic skills, he will most likely not end up in an institution. Many people on this forum are not in an institution despite having autism. Also, even some people who live in institutions are happy and/or don't want to be cured. KingdomOfRats seems satisfied with her life right now, from her post. People with autism are not necessarily defenseless or victims of their own circumstances.

I suggest you check out this page and see what you think. Especially the comments may be very interesting to you as a parent. I don't agree with everything she says but I definitely support the general direction of hew view. She is a highly successful adult on the spectrum and mentors teens/young adults with ASD. She also has children who are on the spectrum, although I'm not sure how severe they are.

What do you think of all this?

You are correct about what I mean by free therapy. Technically it's not free since they have to pay for it because they have to pay the therapists that work in the school and the taxes pay for that.

I wasn't being critical when I said parents use it for free therapy. I would do the same too if I had a special needs child and to me school is a place where you can have a break from your kids so in a way it is like a daycare but it's not because they are there to learn and it's the law kids have to go to school. Some parents do use day cares so they can have a break from them. I have seen them admit that online. Some may argue they use them as a babysitter or having a stranger raise them but it also works for the child too because they are learning social skills and how to play with other kids and they may be learning colors and shapes and numbers and daycare is like a preschool so it's not just a baby sitter some people make it out to be. I used to think it was a baby sitter until I learned you have to actually enroll them and it's not just a place where you go and drop your kids off so you can go to the doctor's or do your shopping or run some errands or do your free time without any interruptions or having to leave so soon and then you come back and pay the place and get your child and leave and they never see your kid again or don't see them for a while.

MathGirl, I think you're still not taking into account wear and tear on the families.

Suppose every autist could have "basic self-care, some communication, and basic academic skills". That's not nearly enough to be able to get along in the world, particularly in non-democratic-socialist countries with thin-to-nonexistent social safety nets. Someone with only that level of ability would not be able to make it independently. And by "make it" I mean "stay housed, fed, clothed, safe, with medical care".

That means that someone -- which means parents until they die -- remain responsible on a daily basis for the welfare of that adult child.This is before we get to problems like meltdowns (which, in adults, leaves you at risk of eviction, job loss, arrest, police maltreatment), executive functions (I'm taking a break from my taxes, ugh)...the list is mushrooming in front of my eyes. After the parents die -- then what?

Mike Royko's son and daughter-in-law did a long piece for This American Life recently; their teenage son's severely autistic, recently institutionalized. He's institutionalized after his parents (and brother) devoted years and years and all their money to his care. And sustained regular beatings, physical injuries, from their son. They'd walk around covered in bruises. These were well-educated people who threw all they had at helping their son, and they resisted putting him in an institution until it became unavoidably clear that he was too dangerous for them to go on living with.

You're looking at this solely as an issue of the experience for the autistic person. But the autistic person does not exist in a vacuum. Other people's lives are involved, too. Caregiving, particularly caregiving for adults, is now recognized as a significant stressor, one that can break down the caregiver's health, and which often leaves the caregiver impoverished.

I think it might be a good idea for you to look at this not in terms of "autism", but to break it down more narrowly. Certainly not everyone with autism has problems of the degree that Royko's son does. I think it's a complex set of questions: should a gene therapy become available, when is it ethical or unethical to use it on a child? I think there's some parallel in questions about the use of human growth hormone, where you have parents freaking about their kids' being short, and the question is "how short does a kid have to be before HGH is warranted?" Or using psychoactive drugs on the kid -- do you have the kid popping pills because he can't get his homework done, or is it reserved for kids who have hallucinations about murdering their parents, or suicidal kids, or what? Do you see what I'm getting at?