Autism Speaks Science Survey:"Oppose Research on Curing or Preventing Autism"
By Teresa Conrick
It was disturbing to read an article by Disability Scoop that described the results of an Autism Speaks survey about future autism research and focus. These specific statements were alarming:
♦ Many survey respondents specifically indicated that they oppose research on curing or preventing autism.
♦ the group moved to overhaul its mission statement opting to remove words like “struggle,” “hardship” and “crisis” as well as any reference to curing autism.
♦ The findings will help shape how Autism Speaks determines what types of studies to fund and the impact could be significant.
♦ Compared to a similar survey in 2012, Autism Speaks found that respondents this year are more interested in the experiences of those entering adulthood and less concerned about immune dysfunction and environmental factors.
REALLY?
I decided to go right to the Autism Speaks page and see for myself:
The results are in: Priorities in autism research
And the survey results page here
♦ 6,000 people who completed the survey – including nearly 500 individuals on the autism spectrum, more than 4,000 of their family members and more than 1,700 researchers, clinicians and educators.
♦ Overall, we saw particularly strong support for research aimed at health and well-being, autism’s associated physical and mental health conditions, the transition into adulthood and life-span issues.
♦ Immunity and environmental factors received particularly strong emphasis in 2012 - both areas still rated important in 2017 survey (At 567 votes and 383 votes respectively, they win by a landslide).
It is possible that there are people or organizations that would like to profit from extensive and expensive genetic research on autism with a slant on ¨markers.¨ How that information would be used could be troublesome but to see comments like this can also start an incorrect message for the thousands of families who have a loved one that is ill with numerous immune dysfunctions and environmental illnesses:
“Stop trying to find a cure. We do not want to be cured; we want to be accommodated.”
“Researching a cure or genetic markers of autism. Preventing or curing autism is a form of eugenics, which is an abhorrent idea.”
We, families of ill children and young adults, do not want to deny funding for adult transition and lifespan issues -- especially as some of us have young adults who we worry about 24/7. The issue of helping those diagnosed with autism feel better and function better needs full attention and alarm. Too many have self-injurious behaviors; aggression; are non-verbal; in diapers; have severe food/peanut/environmental allergies; have chronic infections; mitochondrial dysfunction; seizures; in addition to social difficulties, obsessive behaviors, and language impairments.
The need for helping this large population on the autism spectrum is imperative. My 24 year-old daughter has made positive progress as her health improves, due to immune treatments. I am thankful for all of the grant money, researchers, organizations, and individuals helping in this endeavor but we need much more. For those trying to stop this research and treatments, and deny that these individuals are ill, shame on you.
Teresa Conrick is Science Editor for Age of Autism.
I suffer relatively severe autism myself as an adult, as well as aluminum/mercury overload, chronic severe stress and PTSD, and of course I had extreme picky eating and addiction to junk food/carbohydrates. I grew up eating sugar/grain/starch/processed food laden, beige Standard American Diet, mainly on breaded meats, pasta, pizza and sweets and sugary juice.
Have suffered chronic obesity, excema, ADHD, cognitive/learning delays, head-banging and severe headaches, screaming for hours nonstop, being confused at basic conversations for all my childhood. Also had acid reflux, constipation and severe stomach flu for many years as a kid, vomiting entire cooking bowls of vomit each time i caught it for many times.
Had to be homeschooled cause no school could accommodate my cognitive delays and high level of needs.
I’d benefit greatly from being cured or more eased of autism and my mixed language impairment, as well as my numerous chronic physical illnesses and learning issues.
Fighting against a cure for such a devastating disorder that’s destroyed my life and family’s life is not humane. AS and all these pro-neurodiversity corps don’t speak for me or anybody else who’s severely affected.
GAPS/Ketogenic diet is diet I’m being successful transitioned to and I also take daily heavy metal detox through natural chelation agents via skin, especially at bath-time and now, I eat lots of vegetables, butter, olive oil, sesame oil, coconut oil and GAPS/SCD friendly food I make myself.. My cognition has improved and I have reached better language understanding. I still suffer autism but not as bad, and no more severe headaches or screaming/hitting myself for hours.
Autism is a serious, debilitating, multi system disease. I deserve to be cured or at least normalized, why should I or any one else suffer?
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Posted by: Grace Connell | October 31, 2019 at 10:02 AM
Research does not need to stop.
Calling individuals "ill" is where there is most concern.
It's the high-functioning people on the spectrum who are concerned with blending in as normal individuals and not being institutionalized or considered risks because of their conditions, placed in special education when they function well enough to be mainstreamed. Also finding ways to play to the strengths of those with lower cognitive abilities. That is what "different, not less" means.
Some of the survey answers probably come from the high-functioning or Asperger's crowd, so it's a matter of getting the entire spectrum to come together.
Posted by: Chris | March 27, 2018 at 01:55 PM
I think we should look at what causes autism. Encephalitic brain damage. So how do you cure it? It would be the same way you "cure" the brain damage caused by a stroke, when the stroke victim can no longer speak intelligibly. Sometimes therapy can help, other times it can't. Probably again depends on how long the encephalitis lasted. And therapy for this damage to the language center of the brain is essentially ABA ESL. English as a Second Language using discrete tiny steps practiced exhaustively. My daughter couldn't say anything but a few useful sentences which she could not break apart into interchangeable words. So she could say What's for supper? but not much else. Four years ago it was brand new to her to say Here it is! There it is! But we have worked very hard, doing all four Connect books and are near the end of the third Interchange book. Now she routinely says things like Where did you put it? What are we going to buy? Are we going to Mass? They were in the cabinet. Not much, but four years ago she couldn't say any of these things. A month ago she said I would be happier living with her. (conditional, comparative, gerund) I don't know if anyone remembers that I said here two months ago that we were working on gerunds, -ing words used as nouns. And recently she said, out of the blue, I like going skating. She could have just said I like skating, but she used a more complex structure. And she's a different person now, that is, becoming a person, which you really can't without language.
It would have been better if we could have started ESL as early as possible, recovered her synapses when there was still time to catch up and develop normally. But she's making progress. At 17. We only started this when she was 13. It may be months before I hear her spontaneously use what we're working on now, but she probably will. With language she'll be better able to see and reflect upon her own behavior, and may very well continue to normalize to a greater degree.
I think this is what a "cure" is, very slow and careful restructuring of the neural circuits which were broken, using ABA methods.
Posted by: cia parker | November 13, 2017 at 10:36 PM
Peggy,
I don't think the classic autists are born that way: they just had the vaccine encephalitis for a shorter period of time and emerged with less brain damage. I screamed for several days after the DPT at three months old and my brother beat his head on the bars of his crib for months after his, and we both grew up with Asperger's.
I think autists who can understand their condition at all feel hurt that many of those around them would like them to be cured, feeling harshly judged for being what they are. In an exercise in our ESL program the other day, there was a question: What would you have liked to change about yourself? My autistic daughter shut down and said Nothing (thinking that I was going to say Wouldn't you like to not be autistic?) I didn't say it; I said In my case, I'd say I'd like to lose weight. And she perked up and said I'd like to lose weight too.
I don't know what it's like to be her and have everyone she just meets do a double take when they realize she's impaired. But once they reach the late teen years I think you need to back away from thoughts of a cure: it takes your attention away from accepting present reality. And how insulting if your parents continue to go on and on about trying to cure you. I can see their point in saying What's the matter with me the way I am?
We know what the cause is. The solution is to refuse most or all vaccines. Is there really anyone out there now more afraid of measles than autism?
Posted by: cia parker | November 13, 2017 at 07:37 PM
Aimee, I am glad that I helped you understand the survey better. Yes, it would be nice if there was a compromise and the 'cure' and 'no-cure' sides both have their way, but Johnathan hinted at this, and I agree; there is a fundamental conflict between the two sides, and there is no compromise to be had. It's a matter of one side or the other winning.
To see this, we need to reflect deeper on the three objectives for autism being bandied about with this survey, they being prevention, cure and treatment. First, we have prevention. For us 'cure' folks, we do not see autism as natural, or just a neurological difference. We see it as unnatural, largely determined by environmental influences, and a disorder to be prevented. The 'no-cure' side, on the other hand, sees autism as natural, just a difference between neurological states, and even if they concede that autism is a disability. Seeking prevention of autism for them then is wrong, since its a violation of nature.
As to cure, this relates to what we should do about autism when someone is afflicted with it. For us 'cure' folks, again, autism is not just a difference; it is an unnatural disorder that should be cured. Most of us do not seek to impose this cure on autistic people who do not want it, but we believe the option should be on the table for all. The 'no-cure' side by contrast who considers autism natural are against cure, and that opposition is quite militant in that they believe it should be completely off the table. For them, cure should never be an option because it's an 'evil' violation of the autistic person's right to exist.
As to treatment, for us 'cure' gang there is essentially no difference between cure and treatment. We accept autism as a disability that often negatively impacts the autistic person, impeding his happiness and wellbeing, and so we call for treatment or cure. The 'no-cure' side, however, has a slightly different take on treatment. For them, they do concede that autism can often confer significant impairments, and in those cases they agree that intervention or treatment is necessary.
.
Again, notice the subtlety in the distinction that the 'no-cure' side is pushing. Seeking cure and trying to eradicate autism is evil; however, treatment is good in helping the autistic person overcome his challenges . Never mind that the 'challenges', the symptoms, are indeed the autism, and by treating them they're are essentially attempting to defeat autism. If you press them, however, they will likely deny the contradiction, countering with tripe in the form of acknowledging the good stuff (ie quirkiness, attention to detail) as true autism that is not to be cured or 'treated', whereas the bad stuff (ie headbanging, being nonverbal), the debilitating symptoms, are 'co-morbid' conditions and not true autism, and should be treated. They will make this argument despite autism being defined precisely by its symptoms, and in essence the symptoms being the autism. The important takeaway, nevertheless, is that the 'cure' and 'no-cure' side agree that treatment is a good thing, and even if the 'no-cure' side desires to limit it to only to those autistic individuals who are profoundly suffering.
Germane to all this, is the important point that these objectives -- prevention, cure, and treatment -- can only be achieved by proper understanding of autism, especially its causes. It can also be added that the 'no cure' camp is quite aware of this, and that's why they are not merely seeking that autism not be cured or prevented, but that it's also not properly studied or understood. Many here are missing this with those respondents calling for no further research into autism causes, and not wanting prevention. The point is it's not entirely about them not wanting prevention, but also not wanting knowledge that would make not wanting prevention untenable. For instance, what if the research was to indeed confirm that environmental influences such as vaccination was causing autism? What grounds would the 'no cure' gang then have to say that autism is 'natural', and a cure should not be sought? They wouldn't have any.
This is why there can never be a compromise between the 'cure' and 'no-cure sides. The 'no-cure' agenda is one that seeks to defeat our agenda of understanding autism, with the possibility of this understanding leading to cure or prevention. Yet, even more damning, the 'no-cure' agenda is simply self-defeating in itself. Remember they also desire treatment for autistic individuals who are profoundly suffering? Yet, again, effective treatment interventions will likely not be found without proper understanding of autism, including its causes. Consider again if vaccines were indeed shown to be the causing autism. Would it serve as an effective treatment protocol to continue vaccinating a child that is seriously suffering? Likely, it wouldn't!
So, we see with the 'no-cure' side, seeking ignorance about autism, their agenda is one of utter futility. Despite posturing about wanting a better future for autistic individuals that agenda stands to offer nothing -- no prevention, no cure, and no treatment. Yet, what else would one expect from that agenda that desires to be blind to autism?!
Posted by: Greg | November 12, 2017 at 09:03 PM
@Greg and @Jonathan -
Thank you both for your comments and analysis of the survey - very insightful and helpful.
I firmly believe those who want a cure should have the right to seek one - and those who do not want a cure should have the option to refuse it. And for everyone in between, there should be research to help ameliorate seizures, digestive issues, sensory issues, allergies aggression, self-injury, and profound cognitive limitations.
For those who - because of the severity of their condition - cannot articulate their desires, then I think their closed loved ones have the right to make decisions in their best interest.
Posted by: Aimee Doyle | November 11, 2017 at 12:54 PM
Jonathan,
Thanks for adding and your comment - ¨we support finding cures that will enable autistic people to live better lives.¨ -- is so important and appreciated.
Posted by: Teresa Conrick | November 11, 2017 at 12:11 PM
I agree, Greg: read carefully, this survey reveals plenty of support for a cure among autistic people themselves. On a scale of 1 to 5, with 1 meaning total opposition and 5 meaning full support, Slide 5 shows that autistic people rank "treatment" slightly above 3 -- so for every neurodiversity proponent who opposes a cure, there is at least one autistic person who wants it. (If you want a cure but prefer to avoid that word, you say "treatment"). And if you look at Slide 11, by far the most popular research priorities are "immune dysfunction/treatment" and "environmental risk factors": both can point in the direction of vaccination, both presume that autism is not purely genetic, and both suggest that autism can be cured or prevented.
As for Q11, respondents who opposed certain types of research were not necessarily opposed to research aimed at a cure. I'm very glad to see that there was opposition to genetic screening, because you don't prevent autism by aborting children with a genetic predisposition to vaccine injury, you prevent it by stopping exposure to environmental triggers. So while the neurodiversity movement opposes genetic screening for autism, so (I assume) does nearly everyone at AoA: the difference is that we support finding cures that will enable autistic people to live better lives. We also believe that autistic people should have the right to choose a cure, so if you oppose finding a cure, you are in effect saying that they should have no choice -- that autism should be compulsory.
Posted by: Jonathan Rose | November 11, 2017 at 10:43 AM
Teresa, thanks for clarifying that. I now think the pie chart makes the results look very interesting from our point of view. I even wonder if Disability Scoops were being "clever" with words, and meaning Less concerned about immune dysfunction and environmental factors THAN THEY WERE IN THE LAST SURVEY, rather than, than about transition to adult life etc. This makes me think there will be many dissatisfied members of AS, and we should take John Gilmore's suggestion of forming an umbrella organization to attract them over to us. Add in my suggestion from above, and what are we going to call it folks?
Posted by: Grace Green | November 11, 2017 at 10:37 AM
Greg,
I am not so sure about nuanced. The AS survey says that the results show that the top want is----
Content areas rated most important: Health and well-being
On page 11 there is a nice visual, a pie graph: Autism Speaks MyResearchIdea Final Results
Immune Dysfunction/Treatment is the number 1 priority at 567 votes. Environmental Risk Factors came in 2nd at 383. Adult Interventions and Services came in at 5th with 125 votes.
My point is that for Disability Scoop to say, ¨Compared to a similar survey in 2012, Autism Speaks found that respondents this year are more interested in the experiences of those entering adulthood and less concerned about immune dysfunction and environmental factors.¨ and ¨The results, released this month, reflect a desire to know more about co-occurring conditions like sensory, sleep and gastrointestinal troubles as well as the overall health and well-being of those with the developmental disorder and an emphasis on transition and lifespan issues.¨ as well as ¨Many survey respondents specifically indicated that they oppose research on curing or preventing autism.¨ and the DS conclusion....¨Already, your input is guiding the formation of our strategic planning for the next three years,¨
It appears that the article is trying hard, in a blatant way, to ignore and minimize the immune and environmental votes and attempt to propel the ¨adult transition¨, ¨we want no cure or prevention¨ into a nonfactual spot. Now if Autism Speaks ignores the real survey results and does not use their funding in these areas in a proportional manner, that will be my next article on this topic. I am hopeful that they do the right thing. Parents have been begging for years to get HELP on the medical/immune piece of autism.
Posted by: Teresa Conrick | November 11, 2017 at 10:10 AM
Teresa, I finally did read the survey, and I did find the section that discussed many respondents not wanting a cure or prevention of autism. Yet, reading the entire survey, it is a lot more nuanced than what Disability Scoop is making it out to be. For instance, Q10 and Q11 are listed below for comparison.
And..
So roughly 1500 respondents do not want a cure or prevention for autism, in comparison with many of the 4300 respondents who want to see the disability prevented. Isn't it then fair to say that the numbers are essentially a wash, and contrary to Disability Scoop's spin that MANY, with the implicit suggestion being MOST don't want a cure for the disability? Actually, I would take things one step further and interpret the survey as suggesting of the 6000 respondents, 1500 of them are high-functioning autistics and their relatives who see autism as a 'gift' or a 'badge' and who are quite vocal about not wanting a cure or prevention. They can be contrasted with the rest, the vast majority, who are not as 'positive' about autism, but are, nevertheless, more reserved in expressing their desire to see it cured or prevented. Throw in what Bob said about the study likely being bias in capturing a disproportionate amount of verbal, high-functioning autistics, and there are even more reasons to be skeptical about the notion that the autism community as a whole do not want a cure for autism. I would sum the entire affair up as a few squeaky wheels making the most noise, and with Disability Scoop and AS feeling obliged to see them getting the grease.
Posted by: Greg | November 10, 2017 at 11:22 PM
My guess is the survey was deeply skewed because it was done by people who support Autism Speaks. We abandoned that organization and stopped raising money for them in 2007 when we realized that they had no interest in helping families locally just taking all of our walk money to New York. I don't open their emails and would never waste my time on a survey financed by them. Bet we're not the only family like that. With that being said, they are one of the most visible and vocal autism groups that people see promoted. I have had to beg family and friends NOT to give $ to them because AS is all you see/everywhere, especially in April. It would be wonderful if we did have a LARGE competing organization as John Gilmore mentioned that cared about environmental autism research. It would also be nice if one of the groups that is worth supporting like NAA, Generation Rescue or even Autism Society of America was able to do a similar survey, that autism parents like us (of kids with regressive autism)participated in, so we could get a REAL idea about what is needed in autism research and priorities/focus.
Posted by: MelissaD | November 10, 2017 at 07:16 PM
Orac bot poor machine.On the 9 11 documentary `Loose Change` they say that all the calls made from the distressed callers were fake and used by morphing technology.That would be 17 years ago guys bound to have moved on with the bots .To mimic Dorits,Deers,Orac, knowledge you would look to regress the technology to match the mentality.
57.14 in
https://www.youtube.com/watch?v=CbZAXFKt-8E
Pharma for Prison
MMR RIP
Posted by: Angus Files | November 10, 2017 at 05:47 PM
Again, I want to point out that it is not AS who is saying ¨they oppose research on curing or preventing autism. but it has become a high jacked message from others who responded to the survey. I know many researchers who have received money from AS to study immune issues in asd BUT far too much money is NOT going to this research and so comments like this from Disability Scoop seems premature and agenda-ish.......¨Compared to a similar survey in 2012, Autism Speaks found that respondents this year are more interested in the experiences of those entering adulthood and less concerned about immune dysfunction and environmental factors.¨
That does not seem to be true according to the survey results. I am hoping AS does the right thing and not only continues to keep funding the asd/immune studies but we see MORE of them.
Posted by: Teresa Conrick | November 10, 2017 at 05:40 PM
++++Are we going to lose another generation because we can't get ourselves effectively organized?++++
I do not want to be cynical or negative but the answer is yes, I suppose.
Posted by: Hans | November 10, 2017 at 05:01 PM
It is well passed time for the people who read Age of Autism and the many organizations they support to form an umbrella group and offer an alternative to Autism Speaks. We have made no discernible progress since my son was diagnosed in 2002. Are we going to lose another generation because we can't get ourselves effectively organized?
Posted by: John Gilmore | November 10, 2017 at 04:26 PM
The comments regarding annihilation of Autists or curing or eliminating or preventing the disorder is always answered by those who are mainly typical Kanner's Classic Autist's, changed in the womb and born that way. Most of them do Not comprehend the Progressive Autism caused by brain damage nor do they think of the large number of severely affected individuals who may never reach their levels of competence.
We don't want to murder them at any age or stage of development but we who do comprehend the difference between the brain damaged Progressive Autist and they, we want research to continue pressing until the medical organizations squeaks. To the point where they All admit that vaccines caused the brain damage after birth of the child.
Since there are thousands of the Progessive type occurring still, everyday, and since those first to band together to follow professional researchers and our own research whose children are now adults still needing help....WorldWide...there is Still Much need for all levels of therapies to help each age group cope, with their caregivers help, towards their peak of health and to their highest potential in all branches of life. The need will Never cease to exist as long as there are Autists on this earth..!! Been there, done that, grandma peg
Posted by: Peggy Jaeger | November 10, 2017 at 03:46 PM
Tim
I have certainly seen lots of rumours of bots, but mostly it is still probably easier to use real people - a lot probably do it for nothing and just enjoy being bullies. I suppose some have been amazed by how much has been posted under the name of Dorit Reiss but that perhaps is the reverse problem - maybe there could be a team modifying her answers to specific contexts, technology may be involved but I still see human’s making choices.
Posted by: John Stone | November 10, 2017 at 02:30 PM
As everyone knows the "skeptics" like those that surround "Orac the Nipple Ripper" have been trained in the techniques of assuming multiple identities so as to make it appear that their opinion is a prominent one in the community.
It used to be that "Orac" and company could, and would, assume anywhere from ten to thirty different identities. Note how his "comments" that appear within seconds of his 14,000 word postings sounded JUST LIKE HIM.
Now, I think, with the use of "bots" they can extend that from one to three THOUSAND identities.
Which, though disconcerting at first, is a clear sign of how easily we are winning the argument - and a sign that we need to ramp up our efforts. Like Trump, looking to prosecute Big Pharma billionaires (the Opioid, and Generic Drug, Crises) we need to think in terms of CRIMINALLY PROSECUTING these disinformation agents.
We need to stop being NICE to these people.
Tim Bolen - www.bolenreport.com
Posted by: Tim Bolen | November 10, 2017 at 12:12 PM
It is horrify that there are people who don't want to prevent or find a cure for autism.
I suppose they haven't read Olmsted/Blaxill's book, Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future.
Posted by: Tim Lundeen | November 10, 2017 at 12:06 PM
Hi Andrea,
I am so sorry your family is having such hard times with GI issues. I wanted to wish you well and hope things do get better!
I also wanted to say that my point was not so much that AS is trying to not do research on issues of the gut, microbiome and immune system but more that others, like pointed out in my post, ie Disability Scoop, is trying to paint that picture from this current survey that more people do NOT want immune and environmental research --- and that just seems to not be the case.
Yes, adults who consider themselves as neurodiverse, seem to be speaking out on not wanting a cure or prevention and that too can be difficult for families who need the studies done and the treatments to help their children-- both kids and adults -- like your son.
Posted by: Teresa Conrick | November 10, 2017 at 12:00 PM
Every now and then , a comment is posted on this website that is brief, unusual, to the point- and anonymous. One gets the feeling that the commenter knows something special, possibly he is an insider. So I am now reminded of a comment given many years ago, with reference to all the big associations- Heart Disease , Cancer , Alzheimers , Diabetes...... and now Autism .
"At the top of all these big organizations is someone who does not want the problem to go away"
Posted by: cherry Misra | November 10, 2017 at 11:54 AM
September was bad. October a nightmare. November has started worse than a nightmare. Gut issues causing daily fits of rage. Constant state of stress and worry. Two holes in the wall outside my bedroom door waiting for the medication to take effect. As I currently sit in surgical waiting room as son is getting scoped I'm literally sickened by this "revelation" by the evil Autism Speaks. We need prevention and cures! Nothing less.
Posted by: Andrea | November 10, 2017 at 10:48 AM
It is those "gatekeepers" that keep the research from being conducted, or hidden.
I have seen it firsthand as a parent at IACC testifying on my son's behalf and recounting his vaccine injury story. Year after year they do nothing-- and now they have limited parents from commenting.
Until the gatekeepers are removed there will be no research, there will be no look for a cure
Posted by: tara | November 10, 2017 at 09:57 AM
Hi Greg and kathi-
Just to clarify, this is not a study but a survey and the information and quotes are from Disability Scoop and AS, and the links are right in the article-
thanks much.
Disability Scoop https://www.disabilityscoop.com/2017/10/31/revamped-scientific-autism-speaks/24371/
The results are in: Priorities in autism research https://www.autismspeaks.org/science/science-news/results-are-priorities-autism-research
And the survey results page here https://www.autismspeaks.org/sites/default/files/docs/as_science_planning_survey_final_pdf_0.pdf
Posted by: Teresa Conrick | November 10, 2017 at 09:39 AM
This is clearly a question of birds of a feather flocking to Autism Speaks. I'm reminded of a recent study by Baron-Cohen which was referred to on AoA in which he described seizures and other symptoms as co-morbidities of autism. I think when he and the AS members talk about autism they are simply referring to the psychological manifestations. This leads me back to my old refrain, that we need to start calling it something which is not just an "-ism" or a syndrome. Our favourite researchers could help with the definitive description, something like Vaccine Induced Neuro-immune Condition. It's not helping our cause to align ourselves with organizations like Autism Speaks. Anyone got any ideas?
Posted by: Grace Green | November 10, 2017 at 08:37 AM
Hi Teresa,
I just glanced at the actually study, but where did you find the results saying that cure or prevention should not be a priority? I actually found this...
Posted by: Greg | November 10, 2017 at 08:26 AM
Absolutely, "shame on them!" It seems quite apparent that the children most affected were NOT included this study. I would love to learn how they selected the group that participated--or maybe not.
After my son was diagnosed, my family and friends did a walk under "autism speaks." I learned very quickly about their organization and have never, ever, supported it b/c, I'm sorry, but they do not support the families or children affected properly, no matter how significant. Very disappointing.
Our children are ill and we desperately need validated studies and researchers to help us understand and learn what we can do to help heal them. Instead, us moms and dads are becoming researchers ourselves. It amazes me how much more I know about diet, nutrition, the microbiome, immune system / dysfunction, etc than 90% of the doctors....and we've been all over this country to doctors from CA to FL to MA to NY, etc and our home state PA to help, heal and treat my son. Very sad to read autism studies/ research being put on the back burner, yet again.
Posted by: kathi | November 10, 2017 at 08:08 AM
I think most families who have family members diagnosed on the spectrum moved away from Autism Speaks a decade ago after that organization gobbled up all of the small non-profits who had been spending money on the successful biomedical/immune treatments, only to shift its own emphasis on finding genetic markers for autism spectrum. That was certainly what caused Katie Wright, daughter of the founders of Autism Speaks, to distance herself from that organization when she was treating her own autism spectrum son.
This new survey and its reported slanted mission further serves to drive a nail in the Autism Speaks's coffin. Families interested in recovering their autism spectrum children so that they may live a far higher quality of life should pursue immune treatments through functional medical practitioners. They can learn from wonderful non-profits such as Thinking Moms Revolution and Generation Rescue.
Out with Autism Speaks!
Posted by: Sharon Kistler | November 10, 2017 at 08:06 AM
"6,000 people who completed the survey – including nearly 500 individuals on the autism spectrum, more than 4,000 of their family members and more than 1,700 researchers, clinicians and educators."
I am curious .. out of the 6,000 people who completed the survey .. how many non-verbal autism victims .. such as my beloved now 18 year old grandson .. or THEIR families .. participated in the survey?
In other words .. in my humble opinion .. it doesn't seem a fairly conducted "survey" ... as it appears to have been comprised of "nearly 500 individuals on the autism spectrum and more than 4,000 of THEIR family members".
Which suggests 4500 of the total 6,000 surveyed were among those who consider "autism a gift" ... and .. that explains why THEY believe .. "Preventing or curing autism is a form of eugenics, which is an abhorrent idea.”
I share Theresa's observation: "For those trying to stop this research and treatments, and deny that these individuals are ill, shame on you."
Posted by: bob moffit | November 10, 2017 at 06:30 AM