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I don't think I adequately communicated what I was saying:

Women who identify their fetuses as potentially having Down Syndrome are subjected to high-pressure tactics to convince them to have an abortion.

Is it quite the same choice if women are being given horror stories that may not even be accurate to convince them to abort?

Insurance companies already discriminate on the basis of genetic testing. Insurance companies will, for instance offer to cover the cost of an abortion but will deny health coverage for a prenatally tested infant with a genetic condition. There are innumerable instances of private insurance companies offering 'abortion or no coverage'. The government may not fund abortions but it is in the private sectors best interest to eliminate potentially sick individuals who will require costly interventions.

Autism is just another target on that list.

The issue is much MUCH bigger than just a woman making a decision. So many different factions have a vested interest in that womans decision that the rhetoric gets thicker and thicker. If people view autism as a monster that will suck the life and happiness out of you, how many women would choose that option? Autism Speaks agenda is to provide public information (not ADVERTISING, as they are very clear to make that distinction) in the form of 'I am Autism'. aka the autism monster. They are spreading this type of fear mongering while simultaneously spending millions of dollars on genetic testing research. It certainly seems like they are seeding the population to make a specific choice once that test becomes available.

Those are just observable facts. Autism Speaks spreads the horror of autism. People do beleive that austistics 'can't speak' or function at any level other than those presented in the Autism Speaks 'educational' materials. They are funding prenatal testing research. They are so fond of using the puzzle piece analogy - so, do that - put the puzzle pieces together. I believe my picture looks quite a bit different than yours.

I understand what you are saying. I personally find scare tactics reprehensible. But it is a difficult thing to answer because it falls solidly into moral and ethical areas that have no evidentiary grounding. There is no scientific basis for deciding such issues as pro-life or pro-choice. You can make a moral and ethical argument for just about anything and immediately find someone that will hold to an opposing view.

Even within this thread we see opinions that Autism Speaks is evil (where is the evidence of this? Evidence that is not based in some personal ethos). Too much of this argument is mired in these types unanswerable questions.

There are many purposes for genetic research, in the case of Autism they do hope to find some kind of gene therapy. But there are other uses in determining what the genetic causes and related conditions are.

I gave an example before of How the autism genome project has resulted in findings that ASD's are prevalent in 30-50 % of children with 22Q-11 deletions syndrome that is related to many congenital anomalies, including immune system deficiencies, heart conditions, etc. The eventual use for this could be in screening people with Autism for underlying heart conditions, that might save their life. Or on the other hand screening people with 22-Q11 syndrome for Autism. There are a number of complex connections that may arise from genetic research that lead to amazing potential to make life better for a number of people, and not just the intended group that is being studied.

I think that a prenatal test is the least likely result from the Autism Genome project, because of the complexity of the genetic relationships to Autism. If one looks at the results from the project so far it becomes more and more mind boggling to pin point a single genetic factor common to ASD's.

The other associated factors gained from the research will in my opinon be the value that is gained from the research.

The lawsuit on the 14 year old girl was copyright infringement and it was supported by the lawyers of autism speaks. While their are many opinions that state the lawsuit was baseless, only a court of law would have been able to determine that for sure. I don't agree with the action, but I don't think it is likely that lawyers at that level of the corporate world would threaten a fraudalent case. If they did that there would be potential for a counter-suit and much worse publicity for Autism Speaks. If you like I can provide references that it was a copyright issue but there are many references on the internet that verify it including "Aspiesforfreedom.com".

I agree that the complaints that have been constructive criticism have been acknowledged by Autism Speaks and they have adjusted accordingly to improve the organization; I argued the point earlier that constructive criticism is worthwhile and valuable, and that all organizations must listen to it and take action to be successful in competing and surviving.

However, we can't expect them to make all the changes that we see fit. Specific examples would be giving up the genetic research and removing ABA awareness from their website. There is too much support and objective ratioanle to warrant a change; however many of the negative issues related two those two items are valid concerns. They do make an effort to present those negative concerns of parents with a web page dedicated to parental response regarding ABA.

I think it is possible at some point they might give in to the input that further vaccine research doesn't merit the attention they are giving it. Since there is also dissent within their ranks it seems like a possibility.

I totally agree with your last paragraph and couldn't have said it better. Using constructive criticism for positive change is a win-win scenario.

However, a categorical demonization of the organization, is only counterproductive in achieving the goal of positive change.

I don't think so; I see everything you see here. It is all cause and effect by a number of factors that relate to each other. Autism Speaks appeals to emotion just like the commercials you see on TV of starving children in other countries, and pets that are horribly mis-treated. All pets aren't mistreated and all children aren't starving on those countries, but if they didn't show the worst case scenario, and appeal to emotion, people would be less likely to support their cause. I don't like that method, it is not having a healthy affect on some autistics and their families, but it is a proven marketing technique used by many charitable organizations.

The only thing I disagree with in your post, is that Autism Speaks certainly seems to be intentionally seeding the public to influence a woman's choice once a prental test becomes available, there is no benefit to them that I see as a charitable organization, discounting conspiracies with the governent or insurance companies.

While the information will obviously potentially affect a woman's decision to have an abortion, if a prenatal test becomes available; a specific potential result of a prenatal test is a small part of the benefits hoped to be derived from the funding. And as I go into detail in the previous post I don't see a likelyhood of an effective prenatal test anywhere in the near future, but that's just my opinion.

It depends on the individual woman; for a woman that is anti-abortion there might not be anything a person could do to influence her decision not to have an abortion, even if it means death for her.

It stands to reason that for a woman that would consider an abortion with a child with a disability, that the more negative information they have the more likely they would have an abortion. In most cases the woman makes a choice for herself based on that information. There are definitely some men that have more influence than a doctor that actually try to force a decision on their wife or girlfriend regardless of disability, so one certainly can't dismiss the power of influence.

While a doctor might suggest it is in a woman's best interest to abort there are enough general resources on the internet for her to make a decision long before she becomes pregnant, with or without autism speaks; influence is a given in all decision making processes.

I don't think there is a such a thing as a completely neutral human decision. My understanding is all decisions we make are based on emotion.

I did not realize that. I declined the prenatal test for Down's Syndrome (against my OB's advice) and that was that. This is a reason for healthcare reform. A child with any sort of disability can quickly bankrupt a family if their care isn't covered. So if I was looking at paying for a disabled child's healthcare out of pocket for every single thing or abortion, I probably would choose abortion. You would have to be either wealthy or committed to being against abortion enough to go into poverty to choose not to abort. I didn't realize this choice had been forced. And offering definate poverty (enough to be get government healthcare) as the alternative would push easily 95% of women to abortion. Or fighting fiercely for healthcare reform instead of letting Teapartiers call it socialism.

I've argued the point consistently with people in PPR that are against abortion and against health care reform (or as they call it, Obamacare); how expanded healthcare coverage, the guarantee of coverage, better prenatal care and access to effective means of birthcontrol will result in fewer abortions, because the financial impact of having children without healthcare will not be as prevalent.

I never thought of the specific point until now, though, how insurance companies will cover abortion but not the child if a prenatal test determines a child has a genetic problem. I'll use that argument the next time an argument against healthcare reform comes up in the context of the abortion issue.

Higher rates of abortion are seen throughout the world in impoverished areas. But it is no wonder, because it becomes a matter of survival.

Another argument for social programs and a reduction in abortion.

Insurance companies now are forced to cover Autism related expenses. With a guarantee of coverage they will no longer be able to deny care to a child born with a "pre-existing" prenatal problem. Taking morals and ethics out of the equation, I agree they are the industry that stands to get the greatest financial gain if a prenatal test for Autism is ever developed. But, healthcare reform will certainly have, a potential impact on a woman's choice to have a child with autism, if a prenatal test is developed.

My bill 14 years ago would have amounted to $300K, if my child born with a disabling condition was not covered by healthcare coverage, for a 50 day hospital stay. Fortunately, for people with no healthcare coverage, medicaid can kick in if the child as an individual is determined permanently disabled, but, that's not always the call.

I'm presenting possibilities. Whether they are intentionally creating a negative national opinion of autism vs simple psychological based advertising has yet to be seen. The government is involved with an agenda to control costs. Insurance companies are indirectly involved by way of legal discrimination of people with genetic conditions. Keeping an eye on the potentials for abuse seems prudent in light of the questionable things they have perpetrated so far.

I happen to agree with you - I think a definitive genetic test is a pipe dream. Autism is a condition with a myriad of symptoms with variable degrees. It stands to reason that more than a single gene, or even a grouping of genes is responsible. We understand so little about the human brain I actually find it rather naive that the belief exists that they can unlock the complexities of brain wiring in autism when they still can't even agree on the issues of brain bilaterality - a brain function issue still in question for over 150 years. They are looking at other factors besides genetics as well. They are looking at very early developmental issues in utero but even there our understanding of how a human being is made is woefully incomplete. They just RECENTLY found that the placenta is more than just a blood filter - the placenta actually produces it's own hormones for the developing fetus independant of the mother. This literally SHOCKED the medical community. Without an understanding of something as basic to human development as the placenta, I definitely think they have a very very long way to go to understanding the causes of any developmental condition that isn't directly gene linked. I personally think they are wasting tons of money, time and research power when all of those resources could be dedicated to improving the understanding, education and treatments of autism and start developing a long range plan for the future.

I think there is going to be a huge need for understanding, education, treatments, community support, integration into the workforce, and financial assistance as the children now diganosed with autism move into adulthood. Maybe another large organization can come into being with that as the focus of funding. Within the current political climate that is against social programs, every source will be vital to help the Autistic people have the resources, and other needs of support that will be required for survival.

That's really interesting about the placenta and hormones. It might explain part of the reason that gender, sexual preference, and what is seen as a male or female brain are three issues that can vary so much within one individual. Influence of the hormones of the mother affecting whatever the influence of the hormones of the placenta in the child have on development.

High pressure tactics?

I was 35 and 38 years old when I had my second and 3rd child, respectively. I was therefore "strongly advised" to have genetic amniocentesis to detect Down Syndrome and other genetic problems. Although I am pro-choice, I did not want an abortion for Down Syndrome, and I had already decided to carry to term whether Down Syndrome was present or not, so I simply declined and my OB could not do the test. No pressure, no tactics. No consent = no test = no abortion for genetic anomaly. Women would be free to do the same if an "autism test" were available.

~Kate

1. Actually, we do get to choose "best medical practice" ourselves, usually. We are entitled to refuse treatment, and to choose what treatments we are given (from the available options that medical science considers safe). The problem with responses to autism in particular, is that the treatments are usually given to minors, whose decisions are made by a third party. My parents were told when I was 11 that ABA wouldn't work on me. And it wouldn't. Why? Because I wouldn't have put up with being treated that way, I didn't want what they were offering and I wouldn't have cooperated. It works with younger children because they can effectively be brainwashed without knowing what is going on at the time. Allowing parents to consent to treatment for their children is fine when the therapy is a complete no-brainer, like cancer treatment or whatever, but it should be avoided at (almost) any cost when there are potential ethical considerations.

You taking the risk of accepting a treatment that may be harmful, is very very different to your parents doing so on your behalf.

2. The fact that my argument applies outside the autism context is not a criticism of the argument- I would make the same critiques of a Schizophrenia charity that I knew was funding ethically dubious research. It just so happens that this thread is about Autism Speaks and not other charities which might also be objectionable.

3. I am not arguing that Autism Speaks should not use parents money, I am arguing that Autism Speaks (and parents!! !) should critique what it is that parents are seeking to achieve. And an easier life for themselves should NOT be on that list. One of the ways to do this is to RESEARCH WHAT ACTUAL AUTISTIC PEOPLE WANT and EMPLOY THEM IN SENIOR POSTS, FOR THEIR PERSONAL CONTRIBUTIONS.

4. Anyone researching or treating autism should be required to take an exam on autistic culture to be allowed to do so. Autism is a NEUROTYPE which results in some deficiencies and some benefits. Medicine should be focused on solving the deficits for those that want them solved, and leaving the rest of it out of it.

5. You seem to be agreeing that the way things currently are isn't acceptable, finally. The fact that it is this way, doesn't mean it should be. And no, I don't think Autism Speaks is better than nothing. Spending millions of pounds harming people is something that cannot be outweighed by benefits to other people. People cannot be traded against each other like that. There are some things that it is always unacceptable for anyone to have to endure, no matter what the benefits might be.

Therefore, I will continue to discourage people from supporting Autism Speaks wherever their name crops up, I will criticise publicly anything they do that comes to my attention that I don't like, and I will lobby my own MPs to take a strong stance on abortion.

duplicate post

Last edited by Meow101 on 13 May 2011, 10:04 pm, edited 1 time in total.

This is exactly what my opinion is on the whole "cure" thing. Some of us want that, others don't, and it should be up to us. I don't personally see my AS as anything but a burden, but I know not everyone agrees, and I don't see it as an "I'm right, they're wrong" thing. To focus so singlemindedly on a "cure" when many autistic people don't even want that is misguided, IMO.

~Kate

1. I don't think whether I live or die should be someone else's personal decision.
2. The fact that Autism Speak's propaganda campaign doesn't cause the death of a child every time a pregnant woman sees it does not mean that they don't have blood on their hands in those cases where it was a contributing factor.
3. There is a massive difference between several people giving their opinion, and spending millions on a propaganda campaign that becomes part of the cultural milieu towards autism.

WHAT AUTISM SPEAKS DOES, WILL CAUSE MORE WOMEN TO ABORT THEIR AUTISTIC CHILDREN THAN WOULD DO SO IF THEIR PROPAGANDA CAMPAIGN DIDN'T EXIST, THEREFORE THEY CAUSE AUTISTIC DEATHS, THEREFORE THEY HARM AUTISTIC PEOPLE.

My statement: "Do we get to dictate our treatment? No.", was a poor choice of words on my part, to clarify, by dictate I meant we don't get to come up with an idea for a doctor to give us a drug that is not approved for a condition, but I'm not sure if it is that way in the UK. We can of course refuse and choose treatments that are approved for our conditions in the US.

I understand your concern about ABA and am glad you were able to speak for yourself; of course it doesn't work for everyone. And I am not discounting the posibility that it causes mental discomfort or distress for those that can't speak and are submitted to it. However, it has been shown to be effective in improving functional skills for some of those people, so it continues to be used and proven as an effective way for some Autistic to gain skills to function in life. I respect your opinion that nobody should have the therapy, people feel that way about many therapies.

My point on schizophrenia relates directly to some of those in the autistic community that see no value in genetic research and a cure, and to the issue of ABA. There are somethings that I believe that the autistic viewpoint can change as far as changes in awareness that are needed to represent the needs of higher functioning autistic people, and issues like the need for Autistic input in the upper levels of decision making on Autism.

There are positive indications that that is happening in the appointment of the President of ASAN to a national level position and the representation of a high functioning autistic person on an advisory board to Autism Speaks. At least in the US, I don't see any potential of genetic research and ABA going away because the government and general public are fully invested in it.

I've never stated that everything about Autism Speaks is acceptable, I hold an opinion on where positive change can be made. I don't agree with all the research and as stated earlier in the topic think it might be possible that the vaccine issue could move down in priority of funding with further negative input on the issue to Autism Speaks by the general public and autistic people.

I also hold an opinion on the areas were I don't see a likelyhood of change, based on evidence here in the US of the value seen in genetic research, and ABA treatment. If I lived in the UK, I might hold a completely different view on the potential for change there depending on how heavily invested the government and general public is, but don't see that potential here in the US.

I'm not completely clear as to what it is you think that parents want other than their children to be able to function well in the world. That's pretty much what every parent wants. But, for all I know it could be culturally different in the UK. It would be normally highly offensive here in the US to suggest that parents are putting their own needs above that of the child.

Of course, there are many selfish parents out there that abuse children regardless of disability, but there is no evidence as a whole, here in the US, that parents of autistic children put their needs above those of their children.

Many parents of children of autism may not have autism, but to take care of a child that cannot communicate and performs self injurous behavior requires some kind of intervention for the child's safety. That's not just a matter of neurotypical difference it is a matter of the child seriously injuring themselves.

If ABA is the only kind of therapy that will work for a child like this, the cost/benefit of the therapy takes on a different meaning if no intervention means possible serious physical injury to the child. And yes, again, I do see the potential for mental distress, but some parents find themselves with no alternative. Do you see one, in a case like this? And can you imagine the kind of stress a parent goes through when they watch their child injuring themselves?

All cases are not this extreme, but when it is stated that ABA makes life less stressfull that's not Autism Speak's position, it is an observed benefit of ABA, when it works to help a child control their behavior, that is commonly understood, that is part of awareness.

I'm not sure that is specifically what you are talking about, but you've mentioned the pitfalls of ABA enough where I think it is part of your concern that ABA is of more benefit to the parent than the child. It could be in some cases, but I would imagine in most cases the parent wants what is best for the child; and less stress is secondary to the concern for what is best for the child.