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What is deletion syndrome??

The debate about the prenatal test is a valid concern. There is currently a prenatal test for down's syndrome. and the numbers of people born with down's sydrome has really dropped alot. I have had the joy to know some folks with down's syndrome and they are the happiest people on the planet and are just a joy to be around. If we all had down's syndrome we may not be very productive but we would not be so evil towards one anouther either. people with Autism are more than just a disease, we have contributed greatly to society in the past and currently. There are a number of doctors, a hoard of tech savy folks, researchers, and engineers on this site. I can see how a coorperate buisness savy aspie would be a rare find since coorperate buisness uses highly developed social skills., but we are neverless have gifts given to us by our special interests and the intense focus on subjects that may not be mainstream buy enrich our world. Parrents dont sign up to have a child with autism willingly...many find that they meant to go to tahiti....and end up in ansterdam instead...but after a while they find out that amsterdam is not so bad after all. Not knocking parrents, there are some very devoted parrents on this site too. However if a couple were told that there unborn child will have autism except for the religous, I think most would choose to abort. Yes, autism will decrease but so will the gifts that autsim brings to the world. I dont think we are the next step in human evolution or anything like that, but we are more than just a disease...we are also a gift to this world because of our unique way of viewing things and our special interests.

I think a great way for autism speaks to campain with us in mind is to feature high functioning well ajusted autistic people and how their gifts give to the world and how they want to give every autistic child a chance to reach their full potential and what a blessing that person would be for society.
That and scratch the prenatal testing and I would be more inclined to support autism speaks.
However I dont like the idea that autistic people are just not the right caliber of a person to be on the board of dirrectors...with some accomidations, I am sure it could be arranged.

That would only be true if the board were composed ONLY, or PREFERENTIALLY, of Aspies. I understand your point, but I also understand the point of many others, and agree with it, that management SOLELY by NT's does not allow truly *informed* management. Someone like you might be an excellent choice. Or, simply a smart Aspie with good ideas on what we need as a group. It does not make sense to me that someone with no clue as to what we live should be making all the decisions as to where the research money goes, and where the PR money goes, without input from those of us who live it. And I mean serious input, not just "my son says this" or "my second cousin with Asperger's says this".

I have a daughter who's going through the process of being tested for AS now. I can speak better for her than some NT who happens to have a better resume than I do, because I have experienced many of the same things she has, and still do. These are the kinds of things that excluding ASD people entirely ignores. Like I said, I can see how what you're saying could be a problem if *preference* were given to people with ASDs, but to *include* us? I don't see how that is an issue.

~Kate

Autism Speaks is not a business. It isn't corporate America. It doesn't exist to make a profit, it is a charity which exists to help people with autism. In a business, if you don't do what your customer wants, they won't buy from you. People with autism don't have that luxury because the "customer" is effectively parents, and psychiatric institutions, and public health services. So the people who are being often negatively affected by autism speaks aren't getting a look in at any point in the process-they don't even have consumer power!

In a situation like that, from an ETHICAL point of view, you need to do something to make sure the people AFFECTED by the research are involved at a senior level with ETHICAL decisions. I am not talking about being involved in assessing whether a particular project is going to deliver results for the money, or whether a particular project is at high risk of losing other funding to make it viable. I am talking about having someone there who is capable of saying NO, we ARE NOT FUNDING THAT PROJECT EVEN THOUGH IT HAS ADVANTAGES AND IS ALMOST CERTAIN TO SUCCEED because it is UNETHICAL, UNACCEPTABLY SO in the following ways. The way other charities do that is by having affected people on the board. I am not saying that that has to be the way Autism Speaks do it, but looking at what they research, and the ideas that they promote, they haven't got someone effective in place to do that.

And there are plenty of AS Oxford philosophy professors who could do that job. What most people take issue with with Autism Speaks is not their practical decision making processes (which are, as far as I can tell with a small amount of research, entirely reasonable), it's the ethical decisions that they make that are faulty.

You are being completely blinkered in what your view of a board is by what a board should be in big business, and you are completely ignoring the many, many ways, in which autism speaks is totally unlike a big business.

That is true (though I do not see early abortion for health-related issues as tantamount to genocide, referencing your previous post), and I would further say that there are practical issues in addition to the ethical issues that someone with AS or HFA could address and give guidance on. IMO it is important that we be at least represented so that, practically and ethically, research, PR and other issues have some direction that is in some way guided by the autistic community itself.

~Kate

22q11 gene deletion syndrome, causes skeletal deformities, heart defects, immune system issues, hearing, eye problems and a number of other issues. It is related to DiGeorge Syndrome, Cardio Velofacial syndrome, and Goldenhar syndrome among other conditions. In the past it what linked just to schizophrenia, but evidence of asd's are seen in 30-50% of cases. A person can carry the faulty gene and not be aware of it.

Autism Speaks has no monopoly control over whether or not a prenatal test will eventually be developed. They are only a fraction of world wide support for the research. If you look at the research so far, there are so many correlations with different genes, that it looks like it will be impossible to pin it down to one specific genetic cause.

Some times the problems associated with 22q11 gene deletion syndrome can be detected by an ultrasound, and this is good so the birthing team will be better ready to correct problems at birth. In my child's case his issues were extensive, but the ultrasound didn't catch any problems.

The gene deletion syndrome affects people in many different ways, but the research that Autism Speaks has been funding could be valuable in screening potential health problems that aren't always visible like heart defects in children with Autism. There may be some that have limited effects from the 22q 11 syndrome that parents are not aware of.

With autism, as a specific disorder, early detection can provide an advantage in giving the child the best opportunity to fulfill their potential. The research that Autism Speaks helps fund has already lead to a checklist that helps screen for Autism at age 1.

It is an objective fact that some would use evidence from a prenatal test for abortion, if given the opportunity, but again, that is not a concern for the researchers, they are trying to develop new breakthroughs to make the lives of autistic children better.

That kind of logic would be the same in protesting against ultrasounds because they may find defects that lead to abortion. While it is true that some abort because of the results of an ultrasound, in other cases it saves a childs life.

A similar analogy is valid for the genetic research. Progress in research cannot come to a standstill because of fear of what someone may or might do with a legal right that they possess. The benefits that are being derived now, outweigh a possibility of what someone uses a specific prenatal test for Autism, if one is ever developed.

We can't blame any organization that funds research to help disabled children, for a woman's right to abortion. They have nothing to do with abortion. It is a separate legal issue.

I also would like to see better awareness of the issues of high functioning people with Autism in their awareness campaign; but the statistical fact is that overwhelming majority of people in all areas of ASD's have problems functioning in life.

The 80% unemployment rate among people with ASD's is evidence of that. For the small percentage that are completely engaged in mainstream life, it is a good thing to hear the positive news, but it's not representative of the condition as a whole, so to a large extent Autism Speaks is representing the reality of Autism that many people experience, and addressing issues through research to help those people have a better life.

ASAN focuses on the kind of support that the minority of people with ASD's that do function well in society need. If you go to one of their conferences and try to support research for a cure it's not likely to be well received, because the focus is on the fact that some can adapt to life without a cure.

By the same token if you go to a conference with Autism Speaks and stand up and say genetic research is dangerous because some may use the information for abortion, it won't be well received because part of their mission is to find a cure, and the potential for a prenatal test can't be separated from that research.

I'm rambling but I think it is a complex issue with many points to consider. While I see a possible hope that Autism Speaks may improve awareness of how well some people with high functioning autism adapt in life, there is no chance that they are going to change their mission to stop funding on genetic research.

Even if they did it would go on barely influenced, because of the great amount of funding received from a multitude of other sources. Only an individual can determine if there is more potential damage with genetic research or more potential for the improvement in the lives of people with Autism.

All things in consideration, and as you can see I have taken alot of things into consideration, my logical mind tells me that the benefits of genetic research outweigh the potential concerns well into the future.

And finally, I don't personally financially support Autism Speaks; they have plenty of deep pockets to support them. If I were to financially support an organization it might be one like ASAN, because they are a small organization supporting a minority group of people with Autism, that doesn't receive as much support.

We can't turn Autism Speaks into ASAN or turn ASAN into Autism Speaks, but I don't see any reason to hate either one or openly protest them when there are more efficient ways to effect positive change in both organizations.

There is nothing inherently unethical about funding a team of genetic researchers involved in a project designed to enable doctors to biologically diagnose autism and enable researchers to develop universal medical treatments and a cure. I can understand the opinion that some have that a cure is not needed for some some people with Autism, but in general. the public believes a cure is needed. That part is more a matter of opinion than ethics.

When it comes to later on down the road and what someone else might do with that information, it becames a matter of ethics that is more a part of the issue of abortion; than information that was researched to find universal medical treatments and a cure.

I believe the ethics you are speaking of involves the intentions of others rather than those of Autism Speaks and the Researchers. To my knowledge, none of the people from Autism Speaks or the researchers has expressed the intention to fund research for a prenatal test for abortion purposes. If that is the case, and I'm not saying you are doing it, it would be slanderous to suggest that they have an ill intention other that what they state their intention is. For those that call "Autism Speaks" the "N***" word or a eugenics organization; in my opinion those are slanderous statements.

If one is upset that a woman might exercise her legal right to an abortion if she has access to knowledge used for another purpose, there is no logical reason to put any responsibility on someone else that is using the information for another intention to help children and Adults with Autism.

It is like the gun control issue, one could argue that we can't manufacture guns because it is likely that someone will use them to harm someone, but we don't do that because people the intention of the manufacturers is to produce of guns to defend oneself from harm and many other recreational activities. Normally we don't call the gun manufacturers actions unethical because someone might do something with the guns that is viewed as unethical. However, I'm sure there are some that have that view.

While some may believe that abortion is unethical it is not illegal and many people don't believe is unethical. The proposed argument of presenting research designed for a good outcome as unethical because someone else might use the information to do something legal, is likely to motivate a mission change on a board supporting the good intention of the research.

Even if a person with high functioning Autism lands a position on the board with the opinion that genetic research is unethical; the opinion is unlikely to be seen as one that leads to any change in the part of their mission that is genetic research; they will likely, respectfully dismiss it.

As a non-profit fundraising organization they do have customers. They are the people that fund the mission and support it. If the mission is widely supported; why would they change it based on a minority opinion?

However, that is not to say a person with high functioning Autism would not be of great benefit to the organization.

Can you point out anything in the research so far that has been harmful to people with Autism. There are plenty of examples of positive developments. Autism Speaks provides those positive developments in the annual report on their website.

Last edited by aghogday on 05 May 2011, 5:40 pm, edited 1 time in total.

The problem is that not all autistic people are as high-functioning as the people on WP. Also, not everyone has the financial means or the patience to care for a child with special needs.

Autism Speaks: they just suck.

Again, very simple solution here.

Autism is, generally speaking, a dreadful, awful, terrible, horrible, reprehensible thing.

High functioning autistic individuals must recognize and understand this. Doing so is part of their responsibility to the species.

They must be able to say to themselves, The problem isn't ME. The problem is AUTISM. After all, aren't autism "advocates" the ones who are always banging on about not defining the individual in terms of the disorder? Like, it's not you, guys. It's autism. And, for the most part, it sucks.

In turn, it is the responsibility of the species to work to accommodate the autistic individuals who already exist.

The "Einstein was autistic" attitude, which reaches its apex on a website like this, has limited utility. Saying that autism isn't "bad" because some autistic people make great contributions is like saying heart attacks are desirable because one time, a guy had one in an airport and it prevented him from boarding a plane that later crashed.

There definitely are things about autism that suck. But it seems that one of the biggest things, isn't because of autism but because of a lack of acceptance. If people, in general, weren't afraid of stimming, could look past the inability of someone to look in their eyes, accept that there is a vital, intelligent human being under the behaviors they find so different, peoples views of their autism may change as well. I know that doesn't hold true for all on the spectrum but it would be a hell of a good place to start.

I'm a dreamer. So sue me.

There are people that are accepting of people with differences; but they are not the majority. Our culture is one that strives for a perfect ideal that hardly anyone can attain.

People are sometimes not accepted for their, looks, clothes, weight, physique, height, socioeconomic status, religion, nation of origin, accent, education level, and so many other things that are common to neurotypical people and not at all associated with Autism. Groups like Autism Speaks and ASAN can create better awareness of the condition but there is no way they can make people accept those that are different.

It is a general part of human nature to be wary of those that are significantly different; it requires our intelligence and awareness of the conditions of others to make the conscious effort to accept people that are different.

But it is a conscious and moral decision of what the right thing to do is, and that's a quality that often is not influenced by information. In general our culture doesn't reward people for doing it; the reward is seen as one that is gained from perfection.

Even on this site if someone doesn't have the skills to use correct grammar or punctuation, they can be immediately ostracized by some of us who are looking for acceptance from others, so it is evident that some of us don't accept the differences in abilities among those that have autism. In other words if they don't match what someone believes is an acceptable standard of punctuation and grammar for a person with autism.

There are probably many people that wouldn't dare post here, because they don't feel their grammar or punctuation skills or good enough, not to receive ostracism over.

The answer that people with poor grammar and punctuation skills are given here at times is to correct their lack of skills; without consideration of who they are or what their potential abilities may be.

If some of us can't understand and accept the diversity among others on the autism spectrum, I don't see how we can expect others outside of the spectrum to accept that we can't always change the things that are different about ourselves like stimming and not looking someone in the eye.

The majority of people here don't ostracize others on the spectrum, and it may be that we as a group are more accepting of others that are different because we understand what it is not like to be accepted. And that judgement often comes with age and experience.

The sad and cruel reality is that it is in all of our natures to steer away from what is not considered normal. It is why some of us have had to try so hard to fake what we try to figure out the norm is, to be accepted and make it in life.

It can be cruel but it is what people in general expect out of others; and our culture is making this phenomenon harder on everyone, not just people with autism.

This is why all the research, interventions, preventions, and potentials in the future are so important; the reality is we all have to cope with this, and any mechanism that can help us cope can be priceless in our experience of life.

The worst possible thing though, is not to accept ourselves; watching autism speaks commercials is not necessarily something positive for a person with Autism to watch, because they do focus on the disability part of autism and will continue to do this, in their effort to raise money for research to help people with the condition. That's not an image that is necessarily healthy for a person that is trying to mainstream themselves with the condition.

Fortunately though, organizations like ASAN are here to provide a more positive image for people seeking to accept themselves as individuals. I don't see, with the mission that Autism Speaks has, that they will every be able to fill the need that a person with Autism has to accept themselves as "normal enough".

The best, thing I think, would be to let them focus on what they do for Autism as a disability; and for we that are finding a maintream avenue in life, with our own coping mechanisms, to focus on what makes us feel good about ourselves.

However, I see the I hate Autism Speaks, also as a part of human nature. I think on the part of some of us it is a tribal connective cause, a common purpose that binds a group of people together against an enemy, regardless of the realistic danger.

We pose absolutely no danger to autism speaks, so if it makes one feel better in sticking together to fight against what is considered an opposing voice, there seems to be an inherent natural benefit there; it's good for us, though, to be aware of what they really are doing, just as it is good for the public to know that there are a minority of people with autism that do quite well in life.

If the people at Autism Speaks really do have overall good intentions, they might be worthy of some level of acceptance and respect themselves, by us; just as we are by them.

I don't see everything that Autism Speaks does as something necessarily good for me on a personal level either; but I have a hard time seeing anyone not accepted when I think they are not being treated fairly and given due consideration, even if I don't particularly personally like the individual or organization. I think it comes from not being treated fairly, so many times when I was growing up.

And that particular trait has gotten me into big social trouble, many times in my life.

1. I do think scientists need to take on board the potential consequence of abortion in their research, and avoid acquiring knowledge at a time when the political climate is such that it is likely to be used in this way. I do think they have a responsibility to take into account the extent to which our society is capable of using information responsibly. I don't think that Autism Speaks' official policy is to intentionally cause abortions, and I haven't suggested as much. I do think that is likely to be one of the effects of their research, and unlike you, I do not think that the lives of those people can be weighed against the suffering autism causes some individuals.

2. I think there is a particular obligation on an organisation which claims to speak on behalf of autistic people to be mindful of the question of abortion, and to direct extensive funding towards campaigning that is likely to prevent it, such as demonstrating the positive sides of autism, and showing the lives that people can lead.

3. I don't think you have fully understood the concept that some "HFA/AS" individuals view their Autism as something that has positively added to their life. Positive effects of autism are me:

-I don't care what people think of me just because they happen to be around me-they have to earn my respect and it's hard to earn
-My opinions are usually more independently formed than other peoples, and include more original thoughts, which can then be debated
- I can academically outperform people with a similar IQ to me because I am more driven, and started being driven much younger, and having an interest in academic rather than social things.
- I don't accept lower moral standards just because that's the way the world works, or because I will lose friends or my job. I hold myself and others to a higher moral standard than anyone else I know. I am prepared to give up my own interests on principle more easily than most people.

I am not saying that any of these things are exclusive to autistic people, but autism does seem to have protected them as *very* strong traits of my personality, and had a cure been forced upon me as a toddler, I may not have had those traits. In terms of what I currently value, taking away my autistic traits would make me a less worthy person. It might make me more palatable to other people. It would definitely have made my parents much happier. And that is the political problem- finding a cure is giving the majority the power to change people for their benefit and use the excuse that it is "for my own good". I don't think anyone should be able to decide what is for someone else's good. And I think that an organisation called "Autism Speaks" should be tackling those political issues and reneging on things like genetic testing which are likely to cause murder, even if they may also have positive effects on some people's lives.

Eighty-percent with Aspergers can't keep employment and they are among the people with Autism that are considered higher functioning. There are many people here on this site that post that they would like to see a cure; but commonly they aren't the ones happy with their condition.

For myself, I was fortunate enough to make it in life for a very long time, and wouldn't have wanted to change anything with a cure, because I was able to cope and was happy with the way I was.

Unfortunately people with Autism that are able to do this are within an extremely tiny minority of the diagnosed cases. While we can see a world without limitation, that's not necessarily the way it is for the overwhelming majority of those with Autism.

Scientist do research to make a living, can we expect them to not do that research because of a potential legal result? Even if there were a few researchers with this opinion there are an unlimited number of research canidates that would take their place. So that is not a probable expectation.

Autism represents the overwhelming number of people that fund them that want a cure. They are one of the largest organizations and have the funding to give a better representation of people that do cope well with the condition. I think that is a positive thing.

But, they have no direct influence on whether or not someone may have an abortion in the future. Autism Speaks doesn't fund research, the people that fund Autism Speaks fund research. Whether or not Autism Speaks exists or not won't keep the dollars from coming in for research.

If Autism Speaks refused to fund it, the people that wanted research funding would simply seek another avenue to fund research. There are many other avenues. Just one research project can be funded by more than 10 avenues of funding. The idea that any change that Autism Speaks makes on their part in regard to research, is going to make a difference is not an probable expectation. The people that fund the research are the ones in charge.

There is a better chance that Roe vs. Wade will be overturned than a reduction in research for an Autism Cure.

The overwhelming majority of the public are not against a cure for Autism; there are a much larger number of people in the country against abortion; but the actual chances of Roe vs. Wade being overturned is unlikely for the forseeable future.

It is estimated that one out of 110 people have autism. It is estimated that 1 out of 350 people have Aspergers. Realistically, why is the public going to change their mind on a cure when they see statistics that indicate that the people with Aspergers, considered high functioning in the general public as opposed to Autism, have an unemployment rate of close to eighty percent.

What is it we could possibly do to help the eighty percent that can't keep steady employment? Research funded by Autism Speaks is already seeking ways to improve life for adults with Autism. Other organizations are funding this research too. I'm quite sure if one wanted to support this kind of specific research there would be an avenue to do it, other than Autism Speaks.

I respect all of your opinions and can identify with them, but I don't see any objective hope of stopping genetic research; the numbers stacked up against that probability are too high.

Better awareness of how people successfully cope with high functioning Autism and Aspergers is an achievable goal; if not through Autism Speaks, ASAN seems to be doing a good job.

I am not arguing that it will be achieved, I am arguing that what Autism Speaks does with a considerable proportion of it's research money is, in my view, unethical and therefore should be opposed in every possible way, and I will oppose it in every way that is open to me. The fact that I am unlikely to be successful is irrelevant to the question of whether I should oppose it. I would rather put energy and money into stopping abortions than into curing something that doesn't need to be cured, and I will argue that others should do the same. If the funding for the research isn't there, then scientists will research something for which there is funding.

In response to your employment statistics. The fact that there is an 80% unemployment rate is not the result of those people being unable to work, it is the result of us being in the minority. I lost a job working for at a law firm where the lawyers were assisting the clients in fraudulent activity. The two NTs I was working with kept their jobs, because they were too dense to see what was going on, and when I pointed it out to them, they chose to look the other way and look after their own careers rather than uphold the ethics of the legal profession. I chose to confront the management, and report it. That is not a part of myself I want to change, and if that means the dole queue for me then so be it. In another way, my progress in my career has been delayed by long periods of depression that resulted not from AS itself but from the way I was treated in my family as a result of that diagnosis, and the lack of knowledge about how anti-depressants work in autistic people. For other people, employment is also affected by things that could be simply changed like strobe lighting, and working environments that simply aren't inclusive. They are also affected by disability charities and government schemes working on a pyramid basis of if you don't get a job, lowering your expectations. That doesn't necessarily work because for me working in a shop might be more difficult than editing a newspaper.

And I don't think "the public" should get a say on whether autistic people are aborted or cured. Everyone conceived should have a right to live their life to it's natural end if they so wish, and a forced cure is not acceptable, and we shouldn't accept it.

Also, there is a considerable bias in those statistics, because most people diagnosed as adults would only bother to get tested for AS when they have difficulties with a marriage (the break up of which often leads people to lose jobs, homes etc because of the stress) or when they have employment problems and need to access the services available. People who have all the same traits but are doing very well in employment terms are unlikely to need to get tested.

Also, the diagnosis itself can put employers off someone they would otherwise hire.

There is no doubt that people who function well don't need a diagnosis or would even consider getting one. However, since your opinion is that it is others that are preventing people with AS/Aspergers from holding down jobs, which I agree is a problem, it is just as likely that there are many that don't have jobs or insurance and can't afford a diagnosis or even are aware of Aspergers or Autism in the US.

That is the way it is in the US because we don't have Universal health care, but it may be much easier to get a diagnosis in the UK and/or receive assistance to live if you need it. Without health insurance in the US and without a medical diagnosis and history of the disorder, a person without a job is likely to live in poverty and be totally missed in the diagnostic count.

If a person here, diagnosed with the condition were to lose a job at a lawfirm, it would be very unlikely they could get any kind of disability or healthcare in the US, because they have proven they can work and are not likely to be determined as permanently disabled.

At least there is hope the healthcare issue is going to be improved.

Likely this colors the picture differently for some people that live here with Aspergers vs. people that live in another country with access to medical care and financial assistance, when they fall through the cracks.

The kind of research that is being done, is the kind of research that can establish why antidepressants don't work well for some people with Autism, provide a better understanding of sensory integration, and perhaps provide new methods to cope better with the environment.

I'm assuming you are from the UK from your phrase living on the dole; her in the US people with Aspergers/Autism are protected in the workforce by the Americans with Disabilities Act, and are required proper accommodation to work where possible. Also, they cannot be discriminated in the workforce, based on problems from their disability.

I understand that scientists might not do the research if funding was not available, but there is nothing anyone can do to stop what the general public wants to fund. There is not even a possibility to influence the general public, unless a person had millions of dollars for a worldwide advertising campaign against a cure. People are funding a cure for Autism worldwide, not just in the UK and the US; Thousands of people. And, for research like the Autism Genome Project, a couple can give a million dollars directly to the researchers without having to ever know Autism Speaks even exists.

I respect your opinion, and while I don't think there is a remote possibility that any of the minority of people with Autism are going to effect public opinion on funding a cure, the only other way, that you seem to agree, to fight the issue of a potential prenatal test leading to abortion, would be to fight the abortion issue as a whole. While it's not likely abortion rights will ever be overturned in the US, I have no idea what the potential for that is in the UK.