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(These are my thoughts on the matter - not necessarily shared by any organization I affiliate with.)

I believe there are assumptions here that may not be real. First, I am absolutely sure there will be a prenatal test for autism. I base that on the health of the current DTC genetic screening producers and the apparent reluctance of any government agency to regulate these products. It dismays me to say this but genetic testing is a pure experiment in minimal government intrusion into a developing high-tech industry. The second, rather optimistic, assumption is that an accurate test for autism has to exist before people start making decisions (and money) off of the limited information we think we have.

There are already fairly cheap (~$250) screening products available that test for huge batteries of genetic markers (including autism) with no claim that all those markers point to a specific likelihood of a particular disease. Its just meant to add market value in a competitive market. It's up to the doctor and patient to make of the data what they will. It's up to them to either be afraid or not. And if they decide to be afraid, I suspect they may be quite generous with the degree of accuracy they'll accept.

I agree that it may take a very long time before we have an accurate test for autism. (And by "accurate" I mean accurate for both positives AND negatives.) what I am afraid of is that there is still much that can happen in the meantime with INaccurate testing. Remember, people don't generally care, down deep, if you can prove the existence of autism in a fetus. They really want proof that there is NOT autism in a fetus. I believe that as soon as they find any reliable genetic indicator that can be fairly reliably connected with autism there will be a large portion of the public - especially those who've had other contact with non-verbal autistics - that will terminate any pregnancy that doesn't test negative for that indicator. This will be the mother's decision to not have a child that needs the kind of care a severe, non-verbal autistic might need - since that's the only picture of autism most people have. However you feel about abortion or the right of severe autistics to live, it would be hard to force that child on a mother against her will. However, I believe that this very likely scenario will easily lead to large numbers of risk-based, poorly informed decisions fueled by fears (both doctors' and parents') of stereotypes of a relatively rare degree of autism. In other words:

"We don't know for sure that the child will be autistic, but this is a gene mutation seen mostly in autistics. Now, we also don't know what degree of autism that might indicate but you'll have to decide if you want to risk having a child who might need constant care and enormous resources. Don't you think it might be better to try again, and make the baby you really want?"

If there is a genetic test someday that is virtually perfect for both positives and negatives, does not require a third-party or doctor to interpret or insert their own values, is an accurate indicator of exactly which symptoms will occur and to what degree they'll occur, and this test is developed AFTER society is well educated about what autism really is and isn't, and there is healthcare and services available that prevent this from being an economic decision, and we have developed appropriate techniques for bringing all autistics to the absolute limits of their potential, THEN I would probably see it as a useful, helpful, morally neutral tool. But that day will likely never come. And anything less will be dangerous, corruptible, and morally wrong.

But that won't stop the testing. 

I'm not foolish enough to think this whole scenario is avoidable. Current politics makes it probable that no government agency will step in and set rigorous standards for accuracy and applicability. With autism being used to frighten people into giving money to charity, it's not likely people will grow to understand that the large majority of autistics are capable of leading productive, satisfying lives. And help from society, for parents or autistics, is only as reliable as the shifting majority's willingness to give you help. 

Science won't be stopped. And poor science will rush forward even faster. The checks and balances that have traditionally protected us from the worst - and not very reliably at that - have largely been overwhelmed by the now popular belief that popularity determines which science will be acceptable and, therefore, funded. I may curse Autism Speaks for its cooperation in that process (especially those fools at UC Davis MIND Institute), and be suspicious of its motivations in funding genetic research, but it is true that, if they relented, someone else would be glad to step up and invest in what will be an extraordinary revenue stream. A stream of billions of dollars, easily swayed by panic, fear, ignorance and greed.

So, I have to concentrate my extremely limited time and resources on the parts of this formula that are actually still open to individual interference. Teaching, understanding, support, and advocacy. How can I lighten the weight on a mother's shoulders while she makes her decision? How can i change the pictures in her mind from horrible imaginings of The Monster Autism to a reasoned calculaton of real possibilities? What help can we offer her if she decides to take the risk? What supports can we provide her child, young and old, that promise a dignified chance to excel and matter? The only way to destroy stereotypes is to give people direct experience that belies those stereotypes. The more the world sees autistics, of all types, succeeding and contributing, the less likely they are to shove them into a closet or ghetto and shun the parents who bore them.

As much I'd like to close down the labs Autism Speaks funds, and prevent their eventual products, I think it's going to be better to educate the consumers. If AS wants to stay solvent, they'll have to adapt to that.

My statement was regarding an accurate prenatal test; As you state companies already provide genetic testing that is relatively cheap; however they are not prenatal tests; they are post natal saliva tests. It may very well be that an inaccurate test is developed in this manner for an adults to see if they carry a correlative gene. However, these type tests can be used in a decision whether or not to have children; using effective means of birthcontrol rather than abortion.

A prenatal test, at this time, for a child, requires amniocentosis a procedure that is dangerous in itself and one that is usually used when there is good reason to believe there is a problem with the pregnancy. While a genetic test for adults might become routine in nature; I doubt amniocentosis will ever be a widely used procedure for otherwise healthy mothers to detect problems in a child.

It is possible that an abortion might result from genetic testing for adults after a pregnancy is in term; but the most reasonable approach would be to test before trying to have children. I understand, some don't use the best approach, though.

I see no moral issue with a parents decision not to have children based on risk a risk based decision from a genetic test. The known probabilities would likely be stated in the literature for the test; and you are correct some would likely not take a chance on having a child if they didn't want to risk having a child with Autism; even if the percentages were low, perhaps at the 25% level.

As a parent who had a child with 22Q11 deletion syndrome, which is now associated with autism and known as a result of the Autism genome project that Autism Speaks helps fund; if my wife I had the opportunity for testing, and understood we might carry the gene deletion, we would have at least had a choice for a decision on whether or not we were willing to take the risk.

Not all children are born with the type of severe problems our child had; however an ultrasound did not reveal them, and even if we saw them, my wife doesn't personally believe in abortion and would have probably carried through with the preganancy.

For people that don't believe in a personal decision for abortion they should have a right to whatever genetic testing that is available for adults to make an informed choice on whether or not they want to have children through effective means of birthcontrol.

I understand they are working on new array testing that will use samples of the mothers blood that will detect correlations with hundreds of possible genetic issues that are not currently detected with amniocentosis. When that happens a mother will have a choice to abort for many more reasons. It is a problem that is unavoidable and as you state there is no stopping science.

For those that don't believe in a personal decision for abortion, it is much less likely that a woman with those beliefs would want such a test. If she was concerned about autism she would be more likely get the test herself along with her spouse to make a decision on whether or not to have children. I see the correlative testing in adults as an alternative to abortion, that should be a parents right.

All that said, we pretty much agree, however from my standpoint of having a child that went through a great deal of suffering, I see genetic research as very positive, in providing prospective parents a risk based decision on whether or not to attempt to have children. Since, as you state, we can't stop science, we might as well take whatever positive outcomes that result from it and focus on those, rather than focusing on the potential outcomes that we don't personally agree with.

Your focus on a solution for people to see the value in Autism, is the only constructive way to proceed that I see. We can't expect others to do what we want them to do, when there are people like you that have the ability to do it in a constructive manner, and not wait for others to align themselves with us.

In my opinion that is were the focus is needed. Aggression, in my opinion, towards Autism speaks is just wasted energy that can be used for these type of constructive efforts, or at least to support those that have an ability such as yours.

I wish ASAN would put a paragraph such as your last two paragraphs on their website and focus more of the wasted negative energy against Autism Speaks, into that positive focus. If so, perhaps many more Autistic people as capable as you would also focus their attention there too.

And for those that want AS to hear their views heard, I think it would be also be constructive for advocacy groups to instruct people with Autism on business like approaches that are more likely to get positive results than the negative approach that many see AS taking toward awareness of people with Autism.

That was a very helpful and informative post. Your stance in general on genetic testing makes a lot of sense to me. You have also taken a very real-world stance that seems to be "at some point, there will be a genetic test which may or may not be fully accurate but abortion decisions will be based on it anyway" and made a goal with that likelihood in mind. Your goal seems to be to make women less likely to choose abortion even when the test comes back "autism gene positive" by showing a non-grim possible life. The image of autism is really in a very precarious balance right now. It has a public face that ping-pongs back and forth between Temple Grandin and John Robison on the one hand and a screaming 10 year old boy smashing himself in the head on the other hand.

Anything you can do to shift public perception towards the calmer, less scary perception is a good thing. Best of all is to show the public and especially families that the screaming 10 year old boy who is smashing his own head is not the permanent reality, even for that boy. Amongst NT parents I know off line, there is sometimes a bitterness that you are either lucky enough to give birth to Temple Grandin or you are unlucky enough to have the kid who melts down frequently and is very self injurious. But proper support really can make things so much better for the kid who is so upset and overwhelmed that he frequently melts down. I think that's what really seems invisible right now. It's as though there are two categories only: LFA and HFA/Aspergers and if your kid is the latter you are in luck but if your kid is the former you are screwed and will never get to go to a restaurant as a family or to a playground or to own breakable things or sleep >3 hours at a time. But it doesn't have to be that way with the right support. And I think it's important to figure out what constitutes "the right support", get it to people, and show that there is no such thing as "screwed" no matter how your kid is born.

The work that I am doing with my ASD "littles" and their parents involves breaking down the paradigms and myths BUT I also am realistic to see that some people really are just screwed. If this isn't the case then we would be more employed as a people. Also there are a number of severely affected individuals who need 24/7 care and support (physical) to keep them alive and not harming themselves. Sorry but there IS a scary picture out there and all the high functioning autistics in the world cannot upset that picture. And they should not IMHO. There needs to be representation from all sides and all places on the spectrum to the public eye.

I am willing to do whatever it takes to prevent murder. In a world where people didn't have the option to abort their child, your approach might make sense. In this world it does not.

And unfortunately, there isn't so much:

http://quixoticautistic.blogspot.com/20 ... e-off.html

Autistic people are routinely excluded from public conversations about autism. It's great that you're making inroads as you are, but it seems that the common default will typically be "parents and professionals."

The problem with representation of the autistic people who need all of that care and support is not that they're in the public eye. It's that autistic people who don't need that level of support are delegitimized and marginalized from the conversation entirely, with a few exceptions. Those who speak up often hear that they're too high functioning to really be autistic, or to need any assistance or be represented.

Autistics.org seems to be down, or I'd link what happened with Michelle Dawson along these lines. And it's happened to a lot of autistic people - Jim Sinclair wrote about it as well.

The other thing is that while the needs of autistic people need to be met, characterizing autism as a monster, describing it as worse than cancer, etc., is just fearmongering and I am not sure how that precisely shows what these autistic people need. If anything, they likely contribute to views of these people as less than human, and compassion is focused on their parents, who raise them and potentially have to take care of them for years after they reach adulthood. Focus on autistic people as people doesn't seem to be so much the case.

The other thing is that with Autism Speaks especially, that they present this bleak picture where 110 people in 10,000 are autistic and then they say that all of those 110 out of 10,000 people are "low functioning." They present it as an epidemic, even though research tends to reinforce that it's a matter of improved diagnostic protocols and not a real increase in the rate of autistic children being born. In their PR materials, autism is just an impersonal force that destroys families, not something real live people have to live with.

I am not trying to present Autism Speaks as unmitigated evil here. I think that there are a lot of easily googled valid critiques of their operating methods, and it looks like they are actually responding to many of those critiques, as some things have changed since I first learned about them three years ago.

They don't actually state that 110 out of 10,000 are LFA, do they? That would be a blatant misrepresentation of the facts. It seems to me the just indulge in making loosely connected statements and let people connect dots that aren't really there.

Take this statement:

110 in 10,000 suffer from autism. Communication difficulties, self care deficits and inadequate life skills create huge burdens on families and autistics alike.

(I made this up - Autism Speaks did not say this)


There is no LOGICAL connection between the first and second sentence. But it is linked grammatically as part of a single idea and people without critical thinking skills will connect the low functioning difficulties with the 110 in 10,000. It is not just Autism Speaks that indulges in the rhetorical slight of hand. It is a very common practice in virtually every realm of discourse that seeks to influence public opinion.

I can't stand this type of crap. Politicians are masters of this.

I think it is more the implied connection. They only talk about low functioning children (not adults, not HFA/AS, etc), but then they use the 110 figure.

Yeah. That's what I was thinking. It is intellectually dishonest to present information that encourages faulty perceptions. It is such common practice in business and politics that I am never surprised to see it. I think this is one of the things that bugs me about this entire issue. Autism Speaks and their detractors are both guilty of this.

I just want the facts.

I am personally trying to be factual. I think emotion is unavoidable in a topic like this and should be acceptable, but I also think that what people bring to the table - the factual content - is more important. It just doesn't work to say "Autism Speaks is harming autistic people" but not back it up. I mean, I agree with that assessment, although perhaps not to the same degree, but I like to have arguments and information to show how I came to that conclusion. I am also sure that Autism Speaks has been improving, so the way I talk about it is different than if it were just the same or getting worse.

I hope that made sense.

It does make sense. And you are right that it is nearly impossible not to have emotional investment in this. But that emotional investment doesn't require us to abandon reason. A well reasoned argument given with passion can be a powerful thing. Too often, people have the passion but not the reasoned argument.

That's what I was trying to get at - that appealing to emotion without facts or a substantial argument isn't helpful.

You got me curious about the 1 out of 110 statement on their website. The note that the prevalence of figures are growing. In their about Autism suggestion, they clearly define Autism as a group of five disorders, including Aspergers. Then they go on to state that 1 out of 110 people are diagnosed with Autism. They then go on to state that a possible rise in the figures in Autism are from a greater number of diagnoses than an actual increase in the "rate" of Autism. I'm looking for something misleading, but don't see it.

They also have a page dedicated to the other four pervasive developmental disorders. On the page for Aspergers they clearly indicate that people with Aspergers may grow up to have a normal life.

I think part of how we all determine the meaning of what we see, is influenced greatly by what we hear. Looking at the entire website, it seems very objectively done, with many references from other organizations for their definitions such as the National Institute of Public Health.

I looked and looked for something misleading but could find none with an objective eye.

For example looking at the Front age it states that one out of 110 have Autism and 1 out of 70 boys have Autism; they state figures are rising. Then state we need answers. They got both of those statements from the CDC, so I don't see anything misleading there. I think some might jump to the conclusion that they are stating that Autism "rates" are rising, but they are simply stating facts from the CDC, and go on to explain that better diagnoses may play a part in it.

Regardless of the reason for the figures rising, that fact still provides the motivation for people to donate money to provide help. That is why they state "We need answers", a plea for funding to assist in their mission.

They use facts in the best way to raise funding, but I don't see any misleading statements about what percentage of Autism is Aspergers or Low Functioning Autism. There are a number of statistics for individual categories; but many sources state that the only accurate statistics are for the statistics on the total number of Autistics, so it is no wonder that they don't display those specific statistics when they could be easily disputed. The CDC statistics are government sponsored so that is about as objective as they can get.

They certainly are focused on the problems that Autism presents rather than benefits, but that is where their concern lies in gaining answers.

I have to give them credit though, for establishing the fact that some people with Aspergers lead normal lives. I'm not sure what else they can do on their website, except for making videos of happy asperger children leading productive lives and going to college. Looking at the overall context of the site, it doesn't seem like that would be appropriate, for someone going there to look for information to help with their child.

If a person's child is doing okay, does not have significant problems, and is busy leading a productive life, I'm not sure why they specifically would need to see a video like that. They state that Asperger children can lead normal lives, but also list a number of interventions for educational purposes, if they are deemed necessary.

I couldn't find anything offensive, but I haven't looked at the site until recently, from my understanding there were things that people found offensive in the past.

I can see where things that have been stated on the internet separate from their official website has raised emotion, but, objectively speaking, taking all things in consideration it seems to me that the website is very professional and the facts stated are backed up by reliable sources; and the controversies like whether or not ABA works for children is given attention to, along with dissenting opinions, with it's own webpage on the site.

I guess part of my surprise at the level of anger, is that I may not have seen their website before many of problems were fixed.

Last edited by aghogday on 19 May 2011, 4:05 pm, edited 1 time in total.

Er, have you seen their PR materials? Most people don't check their website.

I believe someone linked one of their videos earlier in the thread.

Here are some examples from a few years ago:

http://autismcrisis.blogspot.com/2008/0 ... peaks.html

Anyway, as I said, they are improving.

Also, I believe the correct number is 110 in 10,000, rather than 1 in 110, or so the CDC said in 2009. That's 1 in 91.

I would be surprised to see misleading information directly on their website. But I have seen loosely implied 'facts' in their commercials. These are their direct "Appeal to Emotion" media blurbs that are designed to maximize donations. They work. But they aren't very informative. I think this is at the crux of a great deal of the hostility. Autism Speaks willingly indulges in the same tactics that pervades the marketing of products. But autistics are not products and rightfully resent being treated as such. So there will be an inevitable backlash. I'm seeing a slow evolution in Autism Speaks. I can't see the dark conspiracies that some put forth. I do see some missteps. I see some adjustments. I believe that the right pressure from groups and individuals can help change their tone and even their research priorities. Maybe I'm naive, but time will tell.