06-24-2005, 12:03 AM
I have been in an e-mail exchange with Hillary Manning, the Communications Director of Cure Autism Now. Her first e-mail was about a separate issue, but then we started to discuss the issues, I had told her about how walkers at CAN walk in Chicago spat at protestors and tore a sign, she said -
"I truly believe that both your organization and Cure Autism Now can and should co-exist.
But I feel that your members have attacked Cure Autism Now unfairly. We could probably have a very long debate about that(thanks to free speech!) but the point I want to make is that we're trying to help people that have communication deficits and health-related challenges.
At the same time, we advocate for acceptance and understanding, much as your organization does.
I was at the walk in Chicago and I did see 2-3 Aspies for Freedom members conducting a peaceful protest. According to the regulations at the facility (Soldier Field), they were assigned a location in which to conduct the protest. I know that they relocated and were asked to return to the sanctioned protest area. I did not see anyone harass them. I can't say with certainty that nothing like that happened, but I've checked with the staff that attended the walk and no one saw or heard of anything improper. As far as I know, they conducted their protest without incident. However, if they were spat at or their signs were damaged, they definitely should've reported it to the staff at the facility and filed a police report. They were entitled to conduct a peaceful protest without risking physical harm or loss of property.
I know this is an extremely emotionally-charged issue and is highly personal for people with Asperger's Syndrome. But for the parents whose children have been diagnosed with autism, that cannot speak, write,gesture or even return their gaze, who are prone to seizures, who cannot sleep and who have extremely painful gastro-intestinal issues, it is heartbreaking to have an organization state that a cure is not needed or wanted. It is desperately needed and wanted by many, many families. Maybe you can share with me a little more about why Aspies for Freedom is so opposed to what Cure Autism Now is doing. I'd really like to understand."
On the subject of pre-natal testing she said-
"This is a misconception. We do say that we're looking for prevention, but we are talking about preventing the onset of autism, not genetic testing for the purpose of predicting and aborting. We are looking to discover what causes the severe form of the disorder-what's happening in the brain that disrupts communications and what's happening with the immune and digestive systems-to prevent autism from progressing."
To that I replied -
The problem is that you do say that, however, we know that one of the research labs that you fund is looking at prenatal factors, and has studied pregnant autistic women, and their amniotic fluid. We do not know if you have specifically funded this, but we know that it is at the same lab in the UK. If a scientist that you are funding develops such a test, would it then be ignored, or used, scientists make these discoveries and they are then used however as seen fit. We cannot 'uninvent the atom bomb'.
Can you see my point? Do you have detailed knowledge of what each lab, scientist, project, university, is studying with your research money?
Could we have access to any of that information? To know what is being worked on, not by whom and where. Can you say to us that you are not working on a prenatal test, and that CAN will never fund such research?
As for the issue of us at AFF understanding how people and kids with low-functioning autism feel, our members are across the spectrum, we have kids, teens, adults, from LFA to HFA/AS.
Many of us have children ourselves, we also have NT parents as members. I have AS and my son was diagnosed as LFA when he was 3. He did ultimately develop language skills and and at 12 is now considered HFA. So I do know fully what it is like to have an LFA child, we often get told that we don't understand the issue as we are high functioning, but that is unfair.
Some of us have autism and have kids with autism, our opinion is very valid, yet so often dismissed. We face a double edged sword of ignorance in society.
We face pressure to abort in case our chidlren have autism too, can you imagine the pressure that will be facing us when a prenatal test is found?
Did you know that we have members who have had threat of their children being taken from them, and some who have had children taken? It is abominable that amount of ignorance and pressure that we face from a society that sees media coverage of 'epidemics', 'disease', they think that autism is a mental illness, that we are all hopelessly disabled, it compounds all the problems.
You have a strong position to show the media the negatives AND positives of autism. To show how many do develop and lead fulfilling lives, and how those that do need lifelong help have a valid existence too. Instead we see people commenting that 'aspergers babies should be killed at birth', that was on the BBC website. It was removed after a huge amount of complaints, but people do have this ignorance and you have an opportunity to give fair and balanced information. Instead we seem to see the negatives portrayed on your site, an overwhelming focus on children (some people think that there are NO autistic adults).
If the money you raised was spent on adults and child servies, housing,creating real employment opportunities, providing respite for parents,etc, it would help so much.
Autistics are a minority group that deserve fair treatment, as autism is genetic in basis, we face being eradicated as a whole group.
Can you imagine how it feels for young children who have just been diagnosed to feel that their only hope for the future is if a cure is found?
For adults to be told 'you aren't autistic, you can speak'.
When high profile groups like yours portray autism in a biased way,focusing on the least able and not showing a balance, it makes life harder.
Your group is showing that autism needs a cure, and thats what people want.But how many adults on the spectrum write to you and ask for a cure?
We have only seen a few adults who want a cure, less than 5.
If it is true that you do not have many adults asking for a cure, can you make it clear on your site that you are working for NT parents and their kids, and you are not in anyway aiming to cure adults?
Some people say to us that a cure would not be used on aspies anyway,only on LFAs. But some of us started life as LFAs and developed into aspies.
Kids are not having a choice of whether to be cured, its a parents decision.
Many parents try 'cures' like MB12 shots, and they use them on aspie kids too.
Are you aware that any cure could easily be forced onto adults with autism?
People with conditions like bipolar and schizophrenia can be forced to have treatment, so why would autism be treated differently if something became available?
It may be hard for you to see it from our perspective.
We have met adults with autism who are homeless and are not getting the services they need, meanwhile the general public are focusing on a cure for small children. Where is the balance?
At the recent walk, I am glad that you saw that our members were polite and peaceful. They were spat on and a sign torn, an account of it is written on the AFF site in the 'Action against pro-cure groups' forum if you wish to read it. You do not have to be a member to read most if the site.
Maybe you could provide some guidelines for walkers/bikers on your site,that if they see a protestor that they need to be respectful and non confrontational.
I hope you can understand our viewpoint a little more, if you have any other questions I will try to answer them.
Hillary replied -
Hi again, Amy:
Can you tell me which lab you're referring to? Our grants officer, who works with all of the researchers (Therese Finazzo), has offered to research the lab and the scientist funded by CAN to see what the connection might be. I understand what you mean when you say you cannot uninvent the atom bomb. We do have detailed information on what each researcher is working on, as they're held accountable based on their proposals and the grant agreements, but we can only really share the abstracts and any published findings, based on the agreements.
Scientists' work is typically proprietary and doesn't allow for such information sharing.
So, we publish the abstracts, each time we announce the grants funded, which are posted on our website. Sounds like you may have looked at these already. Let me know if you'd like abstracts for this year and years past. I checked in with our science director, Sophia Colamarino, to get her feedback on the prenatal testing issue. This is what she said: As a general point, we are interested in looking for scientific answers.
We do fund research that deals with the possibility of developing markers of the disorder, such that early diagnosis and intervention can be undertaken in order to possibly mitigate the severity of the disorder. We are not advocating in any way for genetic testing to lead to selective abortion, and we are currently not working on a prenatal test (nor do I actually know if one would be possible, but that's another issue. Depends how much is genetic vs. environmental). This is, of course, a much bigger societal issue, and one which is not specific to autism (nor CAN's science program).
So, Cure Autism Now is a fairly high-profile organization, but we are doing all we can simply to move the field of autism research and biomedical treatments along. Unfortunately, we cannot also support the other, most worthwhile, services you've described. In order to compel people to support biomedical treatments, we must show and explain the often severe physiological symptoms associated with autism. HFA and Asperger's really are in a separate category in a sense, although many parents of children with HFA, AS, PDD/NOS, developmental delays, and so on, identify with Cure Autism Now because they simply want the best life possible for their child(ren). At the same time, we advocate for early intervention and do, as a matter of course, inform all media contacts that early intervention is the key to better outcomes.
As the communications director, I constantly face the challenge of helping individuals and members of the media understand the complexity of the disorder, or disorders, known as autism-the many faces and scenarios. At times I feel I barely understand it myself. I believe that when we finally understand how the genetic structure and environment are interacting, and what is happening in the brain and body, we'll find that autism is actually a few different disorders with similar symptoms.
From what I'm told, the immunological issues associated with autism are now being compared to HIV/AIDS, and there may be some cross-over in the research. Same goes for Alzheimer's-similar things are happening with the two distinct disorders.
I can't imagine the terrible pressure of being asked to abort your unborn child.
I really wanted to get back to you today, but I won't be able to respond to everything in your last email. I'm so glad that we're able to have this discussion though. I did want to mention that I've met many teenagers and adults with HFA or AS that appreciate what we're doing.
Many of them grew up, or were infants, at a very different time in our society when people believed autism was a life sentence; that children with autism should be institutionalized.
It's very different here in the US now, and organizations like Cure Autism Now have played a big role in raising awareness and heightening the public's view on autism.
Lately I've been amazed at how many people I meet that can tell me the early signs of autism and how important early interventions are. Of course,a bit part of that is the rise in incidence, and young parents' concern for their children. Please let's keep the conversation going. You've taught me so much already. And please ask any questions I might be able to help with."
I responded -
Hi Hillary, this is the research lab that was asking last year for women with autism who are pregnant to study their amnoicentesis results.
http://www.autismresearchcentre.com/arc/default.asp
They do receive funding from you, but we don't know if it was funding that particular research or not. I would be interested to see the abstracts you mentioned for this year and last year.
When Sophie Colamarino, to get her says 'We do fund research that deals with the possibility of developing markers of the disorder, such that early diagnosis and intervention can be undertaken in order to possibly mitigate the severity of the disorder.' Is she talking about markers from amniocentesis results? Markers in the womb? Or markers to detect in newborns?
When you say 'In order to compel people to support biomedical treatments, we must show and explain the often severe physiological symptoms associated with autism. HFA and Asperger's really are in a separate category in a sense' that is saying that we must show the most extreme cases in order to get people to donate? Right? HFA is also autism, like AS, so as your group is called CureAutismNow is still does cover HFA and AS, right? So you are admitting that you show the severest cases, when really to be balanced you should show autism as it truly is. The whole spectrum, positives and negatives.
Can you see how that representation to the media is harmful to the autistic community? If the general public come to your site and read it to find out about autism they are seeing a distorted representation.
Hillary then wrote -
"Hi, Amy:
Therese looked into it, and as far as we can tell we're not funding anyone at Autism Research Centre. Do you have a name or any additional info? She did tell me that we're funding projects at these institutions though: Newcastle City Hospital, University College, Cambridge, Institute of Child Health and City University.
The abstracts for the grants we're funding this year are here:
http://www.cureautismnow.org/home/article/news/4184.jsp
I believe there are a few new ones since this announcement, but this is a pretty comprehensive list. In terms of what stage of development Sophia was referring to, when she talked about finding markers, I imagine she's referring to newborns.
As far as showing a fair representation of autism, we absolutely do talk about and show AS, HFA, LFA, PDD--virtually anyone that could be identified with autism. I think the issue you have is as much with the media as it may be with organizations like Cure Autism Now. The family most commonly associated with Cure Autism Now are Jon Shestack and Portia Iversen's family. Dov, their oldest, happens to be severely affected and non-verbal. However, in most cases, we are not actively pitching stories--we help educate reporters and connect them with all sorts of families. American media are very interested in the complexity of autism these days and often cover stories of successful treatment and productive adults with autism.
When I said that we must show children that are more severely affected, my point is that we can't not show them--we are funding research and biomedical treatments for those kids. Our whole organizational mission relates back to those kids and familiarizing people with the challenges they face is essential.
Thanks so much, Amy. Let me know if you have additional questions.
I'm not sure we can get to a place where we completely agree, but I think we're both gaining
better understanding of each other.
Hillary"
I replied -
I did know the name of the person being funded at the ARC, this was last year, it is possible that you were funding last year, but not this year.
The man was working under Professor Simon Baron Cohen.I don't have his name anymore.
Did you happen to see this weeks New Scientist? It had a feature about AFF, it was fair and balanced to other viewpoints too, which is good.
Did you think anymore about putting a notice to walkers on your site, on how to handle protestors? There will be further protests I imagine, and I would hope that our members will always been peaceful, and that your supporters would show respect back to them.
Maybe it could be mentioned in packs that are sent out to sponsors?
Let me know, thanks.
Hillary replied -
"I asked Therese to take another look at the research we fund in the UK related to Simon Baron-Cohen. She said that Matthew Belmonte, who is involved with Cure Autism Now, is doing some work under Baron-Cohen, but his work is on imaging and his lab is at Cambridge. (More info here:
http://www.mattababy.org/~belmonte/)
I've been keeping an eye out for that New Scientist article as I had talked with Bijal when she was working on the story and I knew she interviewed Peter. I haven't had a chance to read it, but I'm glad to hear it's a good representation.
Notifying people about protests can be tricky. We certainly don't want to find ourselves in a situation where people that have a strong opposing viewpoint to yours develop a counter protest or something of that nature. Not everyone that comes to the walks is a member or direct supporter of Cure Autism Now. The events are free and open to the public. The main purpose of our walk events is to raise money for research and treatments, but another purpose--equally important in my opinion--is to bring families and friends affected by autism together to share a day where they feel understood and supported. And all sorts of people do come and have a great time: AS, HFA, LFA, PDD, typical, etc. Honestly, it's very disconcerting to me to see a protest become a part of this event.
When we heard about the AFF protest in Chicago, we talked with the volunteer committee and did do our best to ensure the safety and fair treatment of the protestors. In fact, I checked with some of the committee members and a rep from Soldier Field in Chicago and I still can't verify that anyone spat at the AFF protestors or damaged their sign.
From our point of view, I think the best approach is to take each protest separately and work with the committee involved in planning the event. Most of the parents that are involved cannot comprehend why anyone would protest at one of these events, because they are just trying to help their children. It's a very emotional issue and I don't think promoting the idea that these events may be protested is going to help. However, we will always do our best, if we have advance notice, to ensure the safety of any protestors. We worked with the volunteer committee and venue staff and hired extra security in Chicago."
I responded -
Hi Hillary, not sure if you know, but saturday, 18th, is Autistic Pride Day.
So many of us are celebrating. http://www.autisticprideday.com if you want to see some more information. That was the basis of the New Scientist article, if you haven't seen it yet.
About Matthew Belmonte, there is some confusion, as the ARC I mentioned IS the same lab in Cambridge, so we were talking about the same place. If you look on Matthew's webpage is mentions the ARC, Autism Research Centre.
Do you know what 'imaging' means? Is it to do with looking at the brain? MRI scans? I know it may be hard for you to understand why people might want to protest at the walks, and that families are there wanting to help their children, however the protests are peaceful, and are as much an awareness raising as anything. We had a protest at a NAAR walk and the member there found that some people had no idea that some people with autism didn't want a cure.
Some are very surprised by this, so we do feel its important that people are shown both sides of the cure issue, of course in a peaceful way.
If you wish to read the members account of being spat at, etc, it is on the AFF website.
Reply from Hillary -
"Matthew Belmonte's research was into functional magnetic resonance imaging, which looks at brain functions. Okay, I see that Matthew is listed at ARC. But it still doesn't sound like he's the guy you're talking about.
The reason a lot of families don't understand the protesting is that,although they know there are people with autism that don't want to be cured, we are not looking to force a cure or treatments on anyone. I know it's more complicated than that, but what I'm getting at is that these families don't understand why anyone would want to stop the work that organizations like Cure Autism Now are doing to develop biomedical treatments and to help make a better life for their kids. Many kids express their desire to learn to speak, to connect with others and to lead more productive lives. This is what those parents want for their kids. I'd ask you to just imagine if Cure Autism Now or NAAR sent protestors to Autistic Pride Day to oppose your mission. (Don't worry--we're not!)
Talk soon,Hillary"
I replied -
Hi Hillary, you said "The reason a lot of families don't understand the protesting is that,although they know there are people with autism that don't want to be cured, we are not looking to force a cure or treatments on anyone."
The problem is that there is no guarantee that people won't be forced, people with autism were still forcibly sterilized by law until the late 1980's in sweden for instance. Do you know that at the Judge Rotenberg Center in Mass. that autistic kids get electric shock treatments as therapy?
They have to wear a device that shocks them if they misbehave. They don't get a choice about that, why would they have a choice about a cure?
If you want more info on the Judge Rotenberg Center there is much on the AFF site, we are actively campaigning against their treatments.
"I know it's more complicated than that, but what I'm getting at is that these families don't understand why anyone would want to stop the work
that organizations like Cure Autism Now are doing to develop biomedical
treatments and to help make a better life for their kids."
I understand that, that is why raising awareness by peaceful protesting at events is needed to inform parents as to the facts and why many autistics are concerned.
"I'd ask you to just imagine if Cure Autism Now or NAAR sent
protestors to Autistic Pride Day to oppose your mission. (Don't
worry--we're not!)"
Actually we do get hate mail and nasty comments on the site, so in that sense people do protest against us, and we get them in the chatroom too sometimes.
Thanks, Amy
"I truly believe that both your organization and Cure Autism Now can and should co-exist.
But I feel that your members have attacked Cure Autism Now unfairly. We could probably have a very long debate about that(thanks to free speech!) but the point I want to make is that we're trying to help people that have communication deficits and health-related challenges.
At the same time, we advocate for acceptance and understanding, much as your organization does.
I was at the walk in Chicago and I did see 2-3 Aspies for Freedom members conducting a peaceful protest. According to the regulations at the facility (Soldier Field), they were assigned a location in which to conduct the protest. I know that they relocated and were asked to return to the sanctioned protest area. I did not see anyone harass them. I can't say with certainty that nothing like that happened, but I've checked with the staff that attended the walk and no one saw or heard of anything improper. As far as I know, they conducted their protest without incident. However, if they were spat at or their signs were damaged, they definitely should've reported it to the staff at the facility and filed a police report. They were entitled to conduct a peaceful protest without risking physical harm or loss of property.
I know this is an extremely emotionally-charged issue and is highly personal for people with Asperger's Syndrome. But for the parents whose children have been diagnosed with autism, that cannot speak, write,gesture or even return their gaze, who are prone to seizures, who cannot sleep and who have extremely painful gastro-intestinal issues, it is heartbreaking to have an organization state that a cure is not needed or wanted. It is desperately needed and wanted by many, many families. Maybe you can share with me a little more about why Aspies for Freedom is so opposed to what Cure Autism Now is doing. I'd really like to understand."
On the subject of pre-natal testing she said-
"This is a misconception. We do say that we're looking for prevention, but we are talking about preventing the onset of autism, not genetic testing for the purpose of predicting and aborting. We are looking to discover what causes the severe form of the disorder-what's happening in the brain that disrupts communications and what's happening with the immune and digestive systems-to prevent autism from progressing."
To that I replied -
The problem is that you do say that, however, we know that one of the research labs that you fund is looking at prenatal factors, and has studied pregnant autistic women, and their amniotic fluid. We do not know if you have specifically funded this, but we know that it is at the same lab in the UK. If a scientist that you are funding develops such a test, would it then be ignored, or used, scientists make these discoveries and they are then used however as seen fit. We cannot 'uninvent the atom bomb'.
Can you see my point? Do you have detailed knowledge of what each lab, scientist, project, university, is studying with your research money?
Could we have access to any of that information? To know what is being worked on, not by whom and where. Can you say to us that you are not working on a prenatal test, and that CAN will never fund such research?
As for the issue of us at AFF understanding how people and kids with low-functioning autism feel, our members are across the spectrum, we have kids, teens, adults, from LFA to HFA/AS.
Many of us have children ourselves, we also have NT parents as members. I have AS and my son was diagnosed as LFA when he was 3. He did ultimately develop language skills and and at 12 is now considered HFA. So I do know fully what it is like to have an LFA child, we often get told that we don't understand the issue as we are high functioning, but that is unfair.
Some of us have autism and have kids with autism, our opinion is very valid, yet so often dismissed. We face a double edged sword of ignorance in society.
We face pressure to abort in case our chidlren have autism too, can you imagine the pressure that will be facing us when a prenatal test is found?
Did you know that we have members who have had threat of their children being taken from them, and some who have had children taken? It is abominable that amount of ignorance and pressure that we face from a society that sees media coverage of 'epidemics', 'disease', they think that autism is a mental illness, that we are all hopelessly disabled, it compounds all the problems.
You have a strong position to show the media the negatives AND positives of autism. To show how many do develop and lead fulfilling lives, and how those that do need lifelong help have a valid existence too. Instead we see people commenting that 'aspergers babies should be killed at birth', that was on the BBC website. It was removed after a huge amount of complaints, but people do have this ignorance and you have an opportunity to give fair and balanced information. Instead we seem to see the negatives portrayed on your site, an overwhelming focus on children (some people think that there are NO autistic adults).
If the money you raised was spent on adults and child servies, housing,creating real employment opportunities, providing respite for parents,etc, it would help so much.
Autistics are a minority group that deserve fair treatment, as autism is genetic in basis, we face being eradicated as a whole group.
Can you imagine how it feels for young children who have just been diagnosed to feel that their only hope for the future is if a cure is found?
For adults to be told 'you aren't autistic, you can speak'.
When high profile groups like yours portray autism in a biased way,focusing on the least able and not showing a balance, it makes life harder.
Your group is showing that autism needs a cure, and thats what people want.But how many adults on the spectrum write to you and ask for a cure?
We have only seen a few adults who want a cure, less than 5.
If it is true that you do not have many adults asking for a cure, can you make it clear on your site that you are working for NT parents and their kids, and you are not in anyway aiming to cure adults?
Some people say to us that a cure would not be used on aspies anyway,only on LFAs. But some of us started life as LFAs and developed into aspies.
Kids are not having a choice of whether to be cured, its a parents decision.
Many parents try 'cures' like MB12 shots, and they use them on aspie kids too.
Are you aware that any cure could easily be forced onto adults with autism?
People with conditions like bipolar and schizophrenia can be forced to have treatment, so why would autism be treated differently if something became available?
It may be hard for you to see it from our perspective.
We have met adults with autism who are homeless and are not getting the services they need, meanwhile the general public are focusing on a cure for small children. Where is the balance?
At the recent walk, I am glad that you saw that our members were polite and peaceful. They were spat on and a sign torn, an account of it is written on the AFF site in the 'Action against pro-cure groups' forum if you wish to read it. You do not have to be a member to read most if the site.
Maybe you could provide some guidelines for walkers/bikers on your site,that if they see a protestor that they need to be respectful and non confrontational.
I hope you can understand our viewpoint a little more, if you have any other questions I will try to answer them.
Hillary replied -
Hi again, Amy:
Can you tell me which lab you're referring to? Our grants officer, who works with all of the researchers (Therese Finazzo), has offered to research the lab and the scientist funded by CAN to see what the connection might be. I understand what you mean when you say you cannot uninvent the atom bomb. We do have detailed information on what each researcher is working on, as they're held accountable based on their proposals and the grant agreements, but we can only really share the abstracts and any published findings, based on the agreements.
Scientists' work is typically proprietary and doesn't allow for such information sharing.
So, we publish the abstracts, each time we announce the grants funded, which are posted on our website. Sounds like you may have looked at these already. Let me know if you'd like abstracts for this year and years past. I checked in with our science director, Sophia Colamarino, to get her feedback on the prenatal testing issue. This is what she said: As a general point, we are interested in looking for scientific answers.
We do fund research that deals with the possibility of developing markers of the disorder, such that early diagnosis and intervention can be undertaken in order to possibly mitigate the severity of the disorder. We are not advocating in any way for genetic testing to lead to selective abortion, and we are currently not working on a prenatal test (nor do I actually know if one would be possible, but that's another issue. Depends how much is genetic vs. environmental). This is, of course, a much bigger societal issue, and one which is not specific to autism (nor CAN's science program).
So, Cure Autism Now is a fairly high-profile organization, but we are doing all we can simply to move the field of autism research and biomedical treatments along. Unfortunately, we cannot also support the other, most worthwhile, services you've described. In order to compel people to support biomedical treatments, we must show and explain the often severe physiological symptoms associated with autism. HFA and Asperger's really are in a separate category in a sense, although many parents of children with HFA, AS, PDD/NOS, developmental delays, and so on, identify with Cure Autism Now because they simply want the best life possible for their child(ren). At the same time, we advocate for early intervention and do, as a matter of course, inform all media contacts that early intervention is the key to better outcomes.
As the communications director, I constantly face the challenge of helping individuals and members of the media understand the complexity of the disorder, or disorders, known as autism-the many faces and scenarios. At times I feel I barely understand it myself. I believe that when we finally understand how the genetic structure and environment are interacting, and what is happening in the brain and body, we'll find that autism is actually a few different disorders with similar symptoms.
From what I'm told, the immunological issues associated with autism are now being compared to HIV/AIDS, and there may be some cross-over in the research. Same goes for Alzheimer's-similar things are happening with the two distinct disorders.
I can't imagine the terrible pressure of being asked to abort your unborn child.
I really wanted to get back to you today, but I won't be able to respond to everything in your last email. I'm so glad that we're able to have this discussion though. I did want to mention that I've met many teenagers and adults with HFA or AS that appreciate what we're doing.
Many of them grew up, or were infants, at a very different time in our society when people believed autism was a life sentence; that children with autism should be institutionalized.
It's very different here in the US now, and organizations like Cure Autism Now have played a big role in raising awareness and heightening the public's view on autism.
Lately I've been amazed at how many people I meet that can tell me the early signs of autism and how important early interventions are. Of course,a bit part of that is the rise in incidence, and young parents' concern for their children. Please let's keep the conversation going. You've taught me so much already. And please ask any questions I might be able to help with."
I responded -
Hi Hillary, this is the research lab that was asking last year for women with autism who are pregnant to study their amnoicentesis results.
http://www.autismresearchcentre.com/arc/default.asp
They do receive funding from you, but we don't know if it was funding that particular research or not. I would be interested to see the abstracts you mentioned for this year and last year.
When Sophie Colamarino, to get her says 'We do fund research that deals with the possibility of developing markers of the disorder, such that early diagnosis and intervention can be undertaken in order to possibly mitigate the severity of the disorder.' Is she talking about markers from amniocentesis results? Markers in the womb? Or markers to detect in newborns?
When you say 'In order to compel people to support biomedical treatments, we must show and explain the often severe physiological symptoms associated with autism. HFA and Asperger's really are in a separate category in a sense' that is saying that we must show the most extreme cases in order to get people to donate? Right? HFA is also autism, like AS, so as your group is called CureAutismNow is still does cover HFA and AS, right? So you are admitting that you show the severest cases, when really to be balanced you should show autism as it truly is. The whole spectrum, positives and negatives.
Can you see how that representation to the media is harmful to the autistic community? If the general public come to your site and read it to find out about autism they are seeing a distorted representation.
Hillary then wrote -
"Hi, Amy:
Therese looked into it, and as far as we can tell we're not funding anyone at Autism Research Centre. Do you have a name or any additional info? She did tell me that we're funding projects at these institutions though: Newcastle City Hospital, University College, Cambridge, Institute of Child Health and City University.
The abstracts for the grants we're funding this year are here:
http://www.cureautismnow.org/home/article/news/4184.jsp
I believe there are a few new ones since this announcement, but this is a pretty comprehensive list. In terms of what stage of development Sophia was referring to, when she talked about finding markers, I imagine she's referring to newborns.
As far as showing a fair representation of autism, we absolutely do talk about and show AS, HFA, LFA, PDD--virtually anyone that could be identified with autism. I think the issue you have is as much with the media as it may be with organizations like Cure Autism Now. The family most commonly associated with Cure Autism Now are Jon Shestack and Portia Iversen's family. Dov, their oldest, happens to be severely affected and non-verbal. However, in most cases, we are not actively pitching stories--we help educate reporters and connect them with all sorts of families. American media are very interested in the complexity of autism these days and often cover stories of successful treatment and productive adults with autism.
When I said that we must show children that are more severely affected, my point is that we can't not show them--we are funding research and biomedical treatments for those kids. Our whole organizational mission relates back to those kids and familiarizing people with the challenges they face is essential.
Thanks so much, Amy. Let me know if you have additional questions.
I'm not sure we can get to a place where we completely agree, but I think we're both gaining
better understanding of each other.
Hillary"
I replied -
I did know the name of the person being funded at the ARC, this was last year, it is possible that you were funding last year, but not this year.
The man was working under Professor Simon Baron Cohen.I don't have his name anymore.
Did you happen to see this weeks New Scientist? It had a feature about AFF, it was fair and balanced to other viewpoints too, which is good.
Did you think anymore about putting a notice to walkers on your site, on how to handle protestors? There will be further protests I imagine, and I would hope that our members will always been peaceful, and that your supporters would show respect back to them.
Maybe it could be mentioned in packs that are sent out to sponsors?
Let me know, thanks.
Hillary replied -
"I asked Therese to take another look at the research we fund in the UK related to Simon Baron-Cohen. She said that Matthew Belmonte, who is involved with Cure Autism Now, is doing some work under Baron-Cohen, but his work is on imaging and his lab is at Cambridge. (More info here:
http://www.mattababy.org/~belmonte/)
I've been keeping an eye out for that New Scientist article as I had talked with Bijal when she was working on the story and I knew she interviewed Peter. I haven't had a chance to read it, but I'm glad to hear it's a good representation.
Notifying people about protests can be tricky. We certainly don't want to find ourselves in a situation where people that have a strong opposing viewpoint to yours develop a counter protest or something of that nature. Not everyone that comes to the walks is a member or direct supporter of Cure Autism Now. The events are free and open to the public. The main purpose of our walk events is to raise money for research and treatments, but another purpose--equally important in my opinion--is to bring families and friends affected by autism together to share a day where they feel understood and supported. And all sorts of people do come and have a great time: AS, HFA, LFA, PDD, typical, etc. Honestly, it's very disconcerting to me to see a protest become a part of this event.
When we heard about the AFF protest in Chicago, we talked with the volunteer committee and did do our best to ensure the safety and fair treatment of the protestors. In fact, I checked with some of the committee members and a rep from Soldier Field in Chicago and I still can't verify that anyone spat at the AFF protestors or damaged their sign.
From our point of view, I think the best approach is to take each protest separately and work with the committee involved in planning the event. Most of the parents that are involved cannot comprehend why anyone would protest at one of these events, because they are just trying to help their children. It's a very emotional issue and I don't think promoting the idea that these events may be protested is going to help. However, we will always do our best, if we have advance notice, to ensure the safety of any protestors. We worked with the volunteer committee and venue staff and hired extra security in Chicago."
I responded -
Hi Hillary, not sure if you know, but saturday, 18th, is Autistic Pride Day.
So many of us are celebrating. http://www.autisticprideday.com if you want to see some more information. That was the basis of the New Scientist article, if you haven't seen it yet.
About Matthew Belmonte, there is some confusion, as the ARC I mentioned IS the same lab in Cambridge, so we were talking about the same place. If you look on Matthew's webpage is mentions the ARC, Autism Research Centre.
Do you know what 'imaging' means? Is it to do with looking at the brain? MRI scans? I know it may be hard for you to understand why people might want to protest at the walks, and that families are there wanting to help their children, however the protests are peaceful, and are as much an awareness raising as anything. We had a protest at a NAAR walk and the member there found that some people had no idea that some people with autism didn't want a cure.
Some are very surprised by this, so we do feel its important that people are shown both sides of the cure issue, of course in a peaceful way.
If you wish to read the members account of being spat at, etc, it is on the AFF website.
Reply from Hillary -
"Matthew Belmonte's research was into functional magnetic resonance imaging, which looks at brain functions. Okay, I see that Matthew is listed at ARC. But it still doesn't sound like he's the guy you're talking about.
The reason a lot of families don't understand the protesting is that,although they know there are people with autism that don't want to be cured, we are not looking to force a cure or treatments on anyone. I know it's more complicated than that, but what I'm getting at is that these families don't understand why anyone would want to stop the work that organizations like Cure Autism Now are doing to develop biomedical treatments and to help make a better life for their kids. Many kids express their desire to learn to speak, to connect with others and to lead more productive lives. This is what those parents want for their kids. I'd ask you to just imagine if Cure Autism Now or NAAR sent protestors to Autistic Pride Day to oppose your mission. (Don't worry--we're not!)
Talk soon,Hillary"
I replied -
Hi Hillary, you said "The reason a lot of families don't understand the protesting is that,although they know there are people with autism that don't want to be cured, we are not looking to force a cure or treatments on anyone."
The problem is that there is no guarantee that people won't be forced, people with autism were still forcibly sterilized by law until the late 1980's in sweden for instance. Do you know that at the Judge Rotenberg Center in Mass. that autistic kids get electric shock treatments as therapy?
They have to wear a device that shocks them if they misbehave. They don't get a choice about that, why would they have a choice about a cure?
If you want more info on the Judge Rotenberg Center there is much on the AFF site, we are actively campaigning against their treatments.
"I know it's more complicated than that, but what I'm getting at is that these families don't understand why anyone would want to stop the work
that organizations like Cure Autism Now are doing to develop biomedical
treatments and to help make a better life for their kids."
I understand that, that is why raising awareness by peaceful protesting at events is needed to inform parents as to the facts and why many autistics are concerned.
"I'd ask you to just imagine if Cure Autism Now or NAAR sent
protestors to Autistic Pride Day to oppose your mission. (Don't
worry--we're not!)"
Actually we do get hate mail and nasty comments on the site, so in that sense people do protest against us, and we get them in the chatroom too sometimes.
Thanks, Amy