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I can fully understand the issues of better awareness and more funding for living Autistic people.

AS won't be the one to invent a cure, although like you, I doubt seriously that an actual cure or actual prenatal test will be developed anytime in the near future. If either is ever developed it will be the result of the effort of many different researchers and many different sources of funding.

All Autism Speaks is doing is funding a fraction of research, that is funded by many other sources, and considers a cure as part of their mission. I respect your right to have an opinion that what Autism Speaks means by a cure is abortion , but personally, I see no evidence to support that opinion. As an organization they have no specific control over the results of research and certainly no control over abortion. It's fair enough to suspect something like this, but not fair, I think, to state that it is categorical truth without evidence. If you are only stating it as opinion please clarify.

I see the value in positive improvements in most of what you are saying here; however if you are stating categorically that Autism Speaks really means by a cure is abortion that could be seen as not fair to the organization. I see a similarity there between that type of language against Autism speaks as similar to the aspects of their negative campaign against autistics. If we are a rational group of people who seek positive change, we should be able to do it in a constructive manner. But, that's just my opinion. I don't hate any organization or group of people. I seek to understand why they are different or why they do things a different way than I think they should be done.

Children might be healthier if parents insisted that they go outside and exercise; our diet in the 60's wasn't much different, possibly worse; we used lard to fry things in those days. We spent our afternoons outside with fresh air and exercise. There was no internet, or video games, and limited TV, for sedentary interaction; children aren't meant to sit down in one spot all day.

If anything video games, the internet, and TV can be an adaptive behavior mechanism that are causing indirect harm with obesity and early cardiovascular disease in children. Studies show this. A child doesn't have to have Autism to get an overdose of this. It could be just as harmful as any ABA therapy that an autistic child might receive.

However, when one suggests taking that away from a child it is seen by some as cruel and unjust behavior for a parent to this, because most other children spend there time doing these things; so I don't see how they can win, one way or another, with public opinion on an action like that.

Unfortunately with both parents working in the family they don't have the energy and time left to spend interacting with their children, as there was in the days when only one parent worked, and the majority of families were composed of two parents.

It is not just a problem with children with autism it is a problem with many children; many parents must quit their job to be able to successfully raise a child with severe impairments from autism, particularly if they don't want the child exposed to whatever treatment is required in an adaptive setting for the child outside of the home.

There aren't too many easy answers for parents. A trip to the playground is the least of the issues they must address on a daily basis.

I don't think you really understood what I posted. The fact that autism speaks takes away resources from living autistic people is not a grounds on which I oppose it. You are conflating my problems with Autism Speaks with other peoples. I don't actually have a problem with the fact that Autism Speaks makes a lot of money. And I don't have a problem with the fact that they spend it on scientific research. I would actually rather money were spent on scientific research over services because services tend to involve a lot of investment to make a very small difference to someone's life and there are millions of services around having a very shallow impact. In fact, I think one group monopolising the market is a better way of doing it as I have seen charitable services run at a local level where there seems to be more money spent telling people what services are available and passing money around charities that do very little than gets spent on the actual services.

So, my problem is not that I would rather the money got spent on services...I wouldn't. In fact largely I think services tend to do more harm than good if they are targeted at people who aren't severely disabled. And my problem isn't that Autism Speaks is a large and therefore dominant charity. I also don't really think awareness is something to aim at. I would like to live in a society in which weirdness was accepted as normal, generating "awareness" of a "condition" ALWAYS pathologises it, even when it's positive. What I oppose, is misrepresentative "awareness" which creates prejudice towards autistic people unnecessarily. However, that isn' t a main issue, that's something that could be rectified with a good PR person, and a little bit more consideration. That is something to change about Autism Speaks, not something which runs to the core of the organisation.

The real crux of this matter is the abortion issue. It is impossible for gene therapy to happen without finding the genes which suggest Autism. You can't alter a gene if you don't know which ones you need to alter. Once you can do that, it will be quicker, easier, and cheaper to develop a screening test for which foetuses do have it than it will be to develop a way of altering the genes in an adult person. And that means people will abort, or use PGD to avoid having autistic children. It doesn't matter if Autism Speaks wants that. It doesn't matter if the scientists who actually do the research want that. It will still happen, and they are still morally responsible for that outcome by supporting it. If they were opposing it, which any pro-autistic group would do, it would slow down funding and make it take longer to reach. There would be more political will behind ensuring that the outcome didn't happen, and possibly fewer families would choose to abort. They could save lives, instead they are supporting research that it is plainly obvious will cause lost lives down the road. They might be less morally responsible for that outcome than the person offering the abortions, but they are still responsible for it and this isn't something that Autism Speaks can just change because it's politically expedient. The life and death of children cannot be a matter of political expediency. That runs to the core of the organisation and that is the reason they need to be stopped. No-one should speak for autistic people who would make bullets for that gun.

My point about feeding children junk was just that parents don't always make the right choices for their children-they often do what is more convenient for them rather than what is truly best for their child. If parents don't have time for their children, maybe they shouldn't have children.

In general, humans accept what they see as normal and shy away from what they observe as not normal. Society supports prejudices and supports differences depending what the flavor of the month is, but unfortunately no matter what civilized values we try to impose on people, our animal nature is present, and part of the instinct for survival is shying away from what is not seen as normal.

One sees it all through the animal kingdom. Some of us would like to believe we are completely domesticated and separated from that, but the evidence proves out that some of us are still strongly influenced by our animal nature, beyond all rationality at times.

I also, would like to live in a society where everyone is accepted. It happens much more often in a homogenous culture like Denmark where there is not much heterogenous influence. The difference there is people are more alike than different.

The only way we can even attempt to help people understand differences is by education, otherwise a person will see another person acting strangely, and possibly feel threatened, as a result of animal nature. People aren't just going to start accepting weirdness, unless they lose their biological nature, and become robots.

Thanks for the clarification, and all of your opinions as far as I can see might work great for people that experience autism in the way you describe you experience it. But, I'm not so sure that is the case for all others.

If you read the scientific literature on genetic research, you will find that a prenatal test is not much more likely than a cure, because of all the inherent genetic influences found so far.

There is a small concern there, but I personally don't see it as a reason to be against the research that is being done now. I understand that you are against abortion, many people are; and that seems like a reasonable area to oppose, given your opinions on it.

My understanding is that a quarter of all pregnancies end in abortion. None of that has anything to do with Autism Speaks. Autism Speaks is a grain of sand on the beach compared to that.

And even if a prenatal test were developed, all women aren't comfortable with the risks of amniocentosis, and there is no assurance that the indicators found by amniocentosis would have any effect on those that experience autism the way that you do.

At this point in time there is no way to understand what influences Kanners Autism as opposed to Aspergers and there may never be a way to fully understand this due to myriads of environmental factors. There isn't even a screening test for Aspergers at the toddler age; a diagnosis happens later when symptoms become evident.

Having a normal child vs. having a child that needs constant intervention to protect them from their environment and from themselves on a continual basis are two different things. It's not generally the case with Aspergers, but is often the case with Kanner's type Autism. It's easy enough to say that maybe parents that don't have time to take care of children shouldn't have them, but at this point there is no way for a parent to know if they are going to have a child with classic autism.

Your statement gives at least some credibility to genetic research that give an indicator as to what genes a parent may carry, so they can make a decision to use other effective means of birthcontrol if they do not want to bring a disabled child in the world and do not have what it takes to raise a child with disabilities.

You yourself, state that these parents shouldn't have children if they can't take care of them properly. The only way they are going to have the ability to make that choice is through genetic research; perhaps they will be able to make the choice through genetic tests on themselves rather than a prenatal test on a child. And, for those like my wife and I that were to afraid to bring another child into the world to suffer for 50 days, genetic research might have made us more comfortable in a decision to risk such a choice.

There is a positive side to genetic research there, that meets your concerns about some parents decision not to have children through an effective means of birthcontrol other than abortion. The genetic research you fear may actually lead to a result that you see as good; that of a parent not having children they cannot properly care for, by genetic testing, of themselves, instead of a prenatal test.

Firstly, I don't think there is any more reason why a person with Kanner's autism would have any less desire to exist than anyone else. Many people with equally bad disabilities would not want to have been aborted. I am not arguing for a distinction between the rights of Aspies and the rights of severely autistic people.

Secondly, I don't believe human lives can be traded off against each other in that way. If I was put under general anaesthetic today, and had my organs harvested, it may save the lives of a number of NTs. It could also give someone sight and give doctors an interesting specimen to study. But that would be wholly unethical. My rights to life is inviolate, it is not a question of the greatest good for the greatest number. The same is true about this research- no amount of good can justify something that CAUSES THE DEATHS OF INNOCENT CHILDREN. And it WILL cause the death of innocent children if Autism Speaks achieves what it wants to achieve. Genetic understanding leads to genetic screening, and if that means that ONE CHILD is killed, then these people are complicit in the murder of that child and should not be condoned, never mind supported.

And yes it's hard on parents who have more difficult children to deal with, but that was always a possibility when they had children, and it's a possibility they should have considered. Having sex means taking a risk that you will get pregnant with a disabled child. If it happens, that is unfortunate for you, but you have to respect that child's rights and bring them up properly, not force treatments on them without their consent or abort them in the first place.

It might be worse sometimes for child A to be forced to go to the playgoround than it is for child B to miss going to the playground, but if it happens the majority of the time then it is worse for child B. This is the incredibly delicate balance that parents must work out if they have NT and also AS children. The needs of the AS child must be taken into account. But the needs of the NT child can't be overlooked. There has to be balance. It's incredibly unhealthy for the family to revolve around just what one child needs. Whenever there is any disability or health problem, there will be disparity and one child will get a disproportionate amount of parental attention and that causes problems. But parents should try to balance that out and look out for what both kids need. And they shouldn't be castigated for that. Yes. The NT child does need to go to the playground, at least sometimes. He can't be held hostage to his sibling's disability. The book Boy Alone: A Brother's Memoir by Taro Greenfiled shows an example of the emotional fallout when parents act as though their non-disabled child can just deal with literally always coming in second because he isn't disabled.

So what are parents to do? If there are two, then that expands options. One can take the child to the playground while the other syays home with the autistic child. But what of family vacations? Can those never happen? This stuff is important to think about because a stance that the rest of the family just isn't as important as the autistic member and (per a post further on) there should also be no services that could potentially make the playground more bearable to the autistic child or give the family a break while a therapist or simply a caretaker spent a couple hours with the autistic child. I can see being against ABA, especially in some of its incarnations. Although there are benign incarnations which are not attempting to make anyone NT but simply to teach a skill. But why be against other services? Especially when the other services may help the family be less lopsided as a whole and be something other than just the planets that orbit aropund the autistic sun, making sure everything is just so.

Maybe you don't care about the rest of the family. But if you are going to get NT family of AS people on board with switching away from Autism Speaks to a different model then you can't turn them into nothing but the sacrificial support system for an AS child. And you do need to get NT families on board. If someday there is an option for prenatal abortion- and there is a chance although those with genetics backgrounds say it's slim- the only way to save the next autistic generation is 1)autistic people start having children in much higher numbers than is currently happening or 2) sell NT people on the idea that having an autistic child is not such a terribel thing. Autism Speaks propaganda does make it seem like the worst thing in the world, driving previously ordinary parents to homicide and/or suicide. This propaganda must be fought. But you can't fight it by proposing an alternative whereby the family who has an autistic child must re-make their lives entirely and also shouldn't use any services that might make the inevitable changes a little less difficult. Changes will have to be made (I've made significant changes), but if those changes re-work the family to the extent that they are trapped because every enviroment except home is too stressful for the AS child, then no, that's not ok.

Genetic understanding can lead to genetic screening, prenatal testing, and an eventual decision a woman may make to have an abortion. But at this point, there is no guarantee that there will ever be a prenatal test specific for Autism. There have been specific genetic markers related to schizophrenia for decades, but no prenatal test for that condition; why? because as in the case of Autism there are only correlations with genetic markers not specific markers like there are in Down's Syndrome that are easy to identify.

A genetic test for Down syndrome and Autism are two completely different categories of complexity. We just don't have the ability at this point to create a prenatal test for conditions like Autism And Schizophrenia that are so complex and related to a myriad of factors that we will probably never understand.



I think it would be good if parents were always perfect, treatments were always perfect, and a person never found themselves in a situation where they felt like they had to choose an abortion.

Unfortunately, until we come up with better answers, this is the world we live in. It's easy to say don't do any of this, but without real life alternatives that create positive change toward what our idea of perfect is; things will likely stay just the way they are.

It's human nature too. Without a viable option people use the methods that are currently available. Saying, no you can't do this, isn't a viable option, for many.

Without the kind of efforts that organizations like Autism Speaks undertake, we do reduce the potential for options, both of which some people see as good and bad, or in some people's case what they only see as bad or only see as good.

The world is far from one where black and white decisions can be made.

I'm not stating this in an effort to influence your personal decision on how you feel about the potential of a prenatal test; just discussing the issue at hand, and addressing it from my perspective. I understand there are some who believe that any abortion is murder and some who believe it is a legal right and not murder. For the second group this issue isn't nearly as much of an emotional issue as it is for the first group, and you have every right to that opinion.

Bringing them up properly means you inevitably will force treatments on them without their consent. Children don't want treatments of any sort and frequently don't consent to them. If they are not disabled and are lucky enough not to get any illnesses that require more treatment than aspirin and bed rest, then the issue won't come up. If they have any sort of disability at all, treatments they don't consent to are a part of raising them. To do otherwise is neglect. In rare instances, it is murder. A woman was recently convicted of murder in Massachusetts for not giving her autistic son his meds. She gave them to him for a while, then stopped. Her defense was that she couldn't bear to see him made so sick by the meds. That wasn't good enough for the jury. They know that a parents' first responsibility is to take care of their children, no exceptions.

Here's where you say, "chemotherapy is in no way analogous to autism therapies". It isn't in the sense that lack of autism therapies won't kill a kid, the way that lack of chemo or other medical interventions would. My point is simply that parents can't take their child's wishes for the intervention into account when raising them. Society does not permit it. You don't ask a child if they want to be vaccinated. (The answer will always be no unless they are old enough to understand the need, and by then they've already died of whooping cough). You don't ask them if they want to take antibiotics. You don't try to get their consent for having bones set, teeth cleaned, glasses worn or any number of other interventions kids just don't want.

So what to do? I think the answer is not to make interventions at the discretion of the child. Children don't want to be intervened with regardless. They won't see a distinction between interventions with the potential to do harm (such as some quack interventions currently out there for autism) and interventions they deperately need. They don't have the long-range knowledge to make that sort of distinction. So it is up to adults to make the distinction. Rather than try to put this decision in the hands of children, where I really don't think it should be, adults need to research interventions and sort out which have the potential to help and which have the potential to harm and what sort of interventions would be right for which child. A lot of adults on here have done just that and I thank them for it. There have been many posts both here and in the parenting forum where autistic adults describe which interventions they felt were helpful in their childhood and which were ultimately harmful. But that is adult-to-adult talk. This can't be a decision left to children.

Damn. When did reasonable discussion break out?

Carry on. Very interesting stuff.

I never realized how little I knew in life, until I had a child. I think to myself, my God, my mother had a child with autism and one with aspergers and no support what so ever to do it as a single mother. What she put up with me raises her to the level of sainthood, but I didn't understand that until well after I became an adult. I don't think I had the ability to understand it at the time, with Autism.

Another perspective too, is that some parents of Autistic children, may be undiagnosed Autistics themselves. My child passed away, if he didn't I would have done everything I could to do the best job to raise him; but the reality was my own personal issues from Autism made my plate as full as I could tolerably manage in the mainstream world, with no knowledge that I had specific neurological issues most of my life.

Suicide, problems with employment, and problems in marriage, are all more significant issues for people with Autism; for those that have autism that have a marriage, children, and fulltime employment or are single raising a family I can't underestimate what kind of challenge that might be for some.

Thanks for your input here, as a person without Autism raising a child with Autism, my mother was about as neurotypical as one could be; after I was diagnosed with Autism in mid-life, even though I still had a relatively successful life, she still blamed her self on what she could have done that might have been better had she known.

Now as an adult I can look back and see how hard my condition made it on my loved ones throughout my life, with no full awareness that I could see at the time. It's quite humbling to know I lived so long not fully understanding my impact on others and not being able to understand it no matter how hard I tryed. And even, at this point although I cognitively understand, I can't change or step outside the Autistic person that I am.

Obviously a family with two children has to look after the welfare of both children, but I question whether something like going to the playground is a "need" thing. I would also question whether family holidays are a "need". Schools often have trips abroad, and NT children's friends usually have parents who can take them.

I am not opposing services to help out if what we mean by services is just an extra pair of hands (providing the child can deal with the change involved in providing those services, though I suppose that could be fixed by the help looking after the NT child), I was just saying that I don't object to Autism Speaks funding research as a priority, as badly or inappropriate services can be helpful.

I don't understand what point you are trying to make by telling me how hard it is to actually achieve enough understanding of the genetic makeup to get a pre-natal test. If we never get a pre-natal test, that's great, but pouring research money into it seems to be contributing towards getting there. You can't treat something with gene therapy unless you know what the genes are. Pre natal tests will always arrive before gene therapy.

People need to think long and hard about whether they want children before they have sex. If they don't want children. And by that I mean ANY child with WHATEVER DEGREE OF DISABILITY, they should get sterilised, and make sure their partner gets sterilised and then STILL use contraception, and if that isn't enough, there is adoption.

Consent is a complicated issue, which I don't want to go into much here but I don't think the approach of "the parent decides everything until 16" is the right way to go with it. It needs to be individual, and the more ethical considerations are at play the more the child's wishes should be taken into account. Also, it should always be remembered that what a parent does for a child should not be what is in their child's best interests, or their family's best interests, but what they believe the child WOULD decide if they were able to make an informed and considered choice.

A large number of autistic people (myself included) feel that autism is a part of who they are and there are many aspects of it my parents would think it was in my best interests to change, that I would not wish to be changed. There are even some that I know in this broken world it would be in my best interests to change, that I don't want changed. Autism treatments involve a far more complex and personal ethical decision than whether or not to take a vaccine.

My point is the money is being poured into genetic research to find causes of autism, and there are postive results that are already happening as a result of it not related to a prenatal test. A prenatal test is just one possible outcome of the research, that is not likely. So, in my opinion the prenatal test issue is a minute one that doesn't warrant much consideration. If and when it looks like there is a possibility it might really happen, at least then there will be a significant reason for concern.

So, the money might one day take us to the place you fear, but if we don't take the time, effort, and cost to do genetic research on autism, we lose the potential to gain knowledge in other areas that will be of benefit to Autistic people and those that have associated problems, as has already been a benefit of the research.

I see those other research potentials as of much greater benefit than a near impossibility of a prenatal test. It appears that you see the only problem as that near impossibility of a prenatal test in regard to genetic research and see no significant benefit otherwise to the research. Just a difference in opinion there, I can't expect anyone to see the same benefit there that I do.

Your opinion is that people should have disabled children regardless of what condition a prenatal test provides; for some it is an unethical decision to bring a severely disabled child into the world. A difference of opinion in ethics there among many people. People make a decision to have a child these days, and some do with the understanding that a prenatal test will afford them the option of not having a severely disabled child.

That is an argument over ethics, and as additional testing becomes available there are more arguments to be made over the issue of bio-ethics and a woman's right to control reproductive issues.

The only solution there for one that holds your opinion would be to outlaw abortion, but even if the laws were changed I think it is very likely that a woman would still have a right to have an abortion based on prenatal testing. I for one, am in no position to judge a woman on that decision, because I can't possibly put myself into that person's shoes.

Again though, I don't see where Autism Speaks is influencing anything that is already happening, regarding abortion, and doubt they will ever have a significant impact on abortion in the future.

Actually, there are interventions that shouldn't be done without the child's consent, and interventions that children might request. That is to say, there are gray areas here and parents should listen to their children and not run roughshod over them because they "know what's best." They don't always know what's best.

One example I will use specifically is the decision to perform genital surgery on intersex children - this sort of thing should not be performed until the child can give informed consent and explain what they want, or even whether they want anything or not.

That seems to me to be trading off the benefits of the research with the lives that will be lost down the road. And don't kind yourself that people need to know with certainty that a child is severely autistic, many will opt just to abort or use PGD to ensure the child has none of the signifiers. It doesn't have to be a brilliant test to cause abortions.

I know full well that it is unlikely we will ever get to a point where abortion is illegal irrespective of prenatal test results. That is why I am so strongly opposed to the possibility of pre-natal tests.

As to those who think it is unethical to bring a severely disabled child into the world-many disabled people are happy to be here. It is possible for those that don't, to choose not to. Yes that is a tough decision to make, but it's not ethical to balance the fact that some would prefer never to be born against those who wish to be here. People who don't want to be here have a choice to leave. A nasty choice is better than no choice, which is what people are left with.

I have no problem with people who choose not to have children because they carry a gene for a disability. But killing CANNOT be an option.

Well put, I defnitely can understand all of these views. Thanks for clarifying them, I learn a little more as I go.