Mr. Wright, is autism an epidemic or not? Why not give real examples of how to make a financial impact?

30 Nov

Bob Wright co-founded Autism Speaks and was their representative to the congressional hearing held yesterday. As part of that hearing, he called autism an “epidemic”, stating:

More than seven years have passed since my wife, Suzanne, and I founded Autism Speaks. During that time, we have seen the prevalence of autism in America nearly double – from 1 in 166 children in 2005 to 1 in 88 today, including 1 of every 54 boys. The prevalence of autism has increased by 1,000 percent over the last 40 years.

Mr. Wright’s testimony also included the statement: “The annual cost of autism in the United States is now estimated at $137 billion – a
figure that exceeds the gross domestic product of 139 countries.”

I tried to work out how Mr. Wright arrived at that figure and couldn’t easily get there. Why, you might ask? It’s nice to cross check: do figures someone assumes match the statements they are making. Luckily a recent interview makes it clearer how he came to these figures:

According to Wright, autism creates costs of $137 billion a year for the U.S., breaking down to $60,000 per year for family. Most of these costs are borne by the parents of the autistic child. Wright told Mitchell he’s “optimistic” after Thursday’s testimony but Congress needs “to have a plan” and “a will to execute it.”

Aside, more burden language. In my family, most of the difficulties with autism are lived by my kid, but I’ll move on. Partly because most of the “costs” in these estimates are incurred by adults.

A bit of quick math to see what autism prevalence Mr. Wright is assuming for autism in his calculation.

$137,000,000,000 cost total divided by 60,000 cost per family is 2,283,333 families. The US Population is currently estimated at 311,591,917. Combining these: 2,283,333 is 0.73% of 311,519,917. That would be an average of 0.73%, across all age groups. 1 in 136. Not so far from the 1 in 88 of the current autism prevalence estimate in the US for eight year olds.

But, wait, he didn’t say it that way. He didn’t say that it was $60,0000 per individual. He said “families”. Let’s take “households” as the estimate of how many families there are in the US: 114,235,996. 2,283,333 is 2% of 114,235,996. Average, across age groups. 2% of families/households have an autistic in them? It’s really the same figure as above (about 0.73%), but in another format. (in the original version of this article, I didn’t catch that fact).

So, Mr. Wright (or whoever in his staff produced these figures) is assuming an autism prevalence somewhere around 1 in 136 (0.73%). Which is pretty close to the current estimate of 1 in 88. Except that Mr. Wright’s figures appear to assume a flat prevalence over age. I.e. no epidemic. So, on the one hand we are told that autism rates are rising to make one scary point, on the other we are told autism costs a lot of money to make another scary point. But both statements are based on polar opposite assumptions. These were political and public relations statements, so it is almost expected that they won’t be self-consistent.

OK, let’s leave behind the “gotcha” phase of the article and re-analyze the statement more closely. He uses the figure of $3.2M as the lifetime cost of autism. That figure comes from this study: The lifetime distribution of the incremental societal costs of autism.

Taking just the results and conclusions of the abstract from that study:

RESULTS:
The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs. The distribution of costs over the life span varies by cost category.

CONCLUSIONS:
Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications for those aging members of the baby boom generation approaching retirement, including large financial burdens affecting not only those families but also potentially society in general. These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood.

If one is going to discuss autism as a “societal cost” issue, one has to focus on where those costs are. The “low hanging fruit” of reducing societal costs are in “Lost productivity and adult care”. Productivity costs were calculated including:

Productivity losses for people with autism were estimated by combining standard average work-life expectancies for all men and women taken from the economics literature (ages 23-57 years for men and 23-53 years for women), 34 with average income and benefits (from Tables 696 and 628 of the Statistical Abstract of the United States36) and estimates of age- and sex-specific labor force participation rates

.

And a similar estimate assuming some amount of un and underemployment for the parents. But, even with the parental lost income assumed, the largest “costs” to society are for adults. Not really surprising as people spend much more of their lives as adults than as children. This begs many questions. I’ll start with: how much of this “cost” to society, right now, is being incurred because our adult autistics are un- and under-employed? Or to put it in a way to entice a member of Congress, how much money could the U.S. be saving, right now, if we did a better job supporting some fraction of the autism population into employment?

About 2/3 of the U.S. population is in the employable age range (18-65). That’s about 208 million Americans. Assume an autism prevalence of 1%. That’s 2.08 million Americans. Assume 1/10 of those are employable but unemployed. That would give about 208,000 Americans. Let’s take $30,000 per year as salary+benefits for these workers. That’s $6,240,000,000 ($6B) that could be realized if we could get this assumed fraction of autistics from unemployed to employed. Not including whatever is being paid out in unemployment or social security to this unemployed population.

One can quibble with the assumptions here, but we are talking big numbers here. The sort that should catch a legislator’s eye. For those who want to quibble with the idea that the autism prevalence is flat: hey, Bob Wright did it. More to the point, it’s probably correct to assume a relatively flat prevalence. And if you have real data to the contrary, you have data that is either unpublished (and I’d love to see it), incorrect or misinterpreted.

One reason to make this sort of calculation, i.e. focusing on autistics who can be employed, is that it is easy and direct. The math is simple. What about autistics who are not so close to employment, or not close at all? Autistics adults who are similar to my kid. How much do we save by investing in them? I would say a great deal. Each step helping a person move from a more restrictive adult support system to a more independent system will save money. Potentially lots of money. If that’s what congress needs to hear to be interested, fine. These are ways to make the financial impacts that should be attractive in Congress.

Rather than focus on the “costs”, I’d rather focus on what can make a person’s life better. Is the reward of a job merely the salary? I don’t think so. For those who experience even greater challenges, giving a person the ability to self-advocate to the point of not being an even bigger target is invaluable. It could stop problems like those discussed here recently.


By Matt Carey

Note, I made edits to this piece within the first 30 minutes of it being published.

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94 Responses to “Mr. Wright, is autism an epidemic or not? Why not give real examples of how to make a financial impact?”

  1. violetyoshi December 1, 2012 at 01:48 #

    Bob Wright should take into consideration that Nazis also regarded those who were disabled in regards to how much they cost German society. I doubt he would want it known that he is similar to Hitler in such regard.

    • Sullivan (Matt Carey) December 1, 2012 at 01:55 #

      Unfortunately, there is a great deal of discussion of “costs” of disabilities. I figured as long as it was out there in this case, let’s take the next step and give the legislators something constructive to consider in making decisions.

      I would caution that comparing people to Nazi’s is rarely helpful in making changes. It is often a way to have your viewpoint dismissed.

  2. Kate December 1, 2012 at 07:00 #

    http://www.disabilityscoop.com/2012/03/30/autism-costs-billion/15286/

    The 137 billion was derived from the preliminary results of a study earlier last year, as detailed in the link above. Per that article in “Disability Scoop” the majority of the costs were estimated for individuals needing services on the spectrum in adulthood in that study. The costs over the course of a lifetime were actually reduced in preliminary results of that newer study at 2.4 million per year for those with intellectual disability and 1.4 million for those without intellectual disability; substantially less that the earlier study from 2007 that suggested 3.2 million per year.

    The author of the newer study focuses on lost productivity of adults, and the need for job opportunities to offset those costs in the linked Disability Scoop article. The results of the data are already being used as fuel to motivate organizational action at the government level.

    I saw the $60,000 per family figure earlier in the day, and was attempting to determine how he came to that figure. The CDC had estimated 1 to 1.5 million individuals in the US with Autism Spectrum disorders before the 1 in 88 figure came out, and I have heard estimates from various sources at 2 million since the 1 in 88 figure came out attributed to the CDC, but cannot find the source of that information on the CDC website. The figure has also been misquoted on some websites to suggest that an estimate of 2 million children in the US are diagnosed with ASD’s.

    It is possible that Wright is privy to more details of the preliminary results of the study, in how it breaks down the prevalence among adults vs. children and costs, but my best guess is someone at this point divided 137 billion by 2 million and rounded it down to 60K.

    Mr. Wright’s “smoking gun” hypothesis in his written testimony for the epidemic terminology was that a fuller scale study of children in the US, like what was done in South Korea, currently funded and being conducted in South Carolina, could potentially result in a similar 2.64 percent of children on the spectrum in the US. It’s really not much more of a stretch at this point in time to suggest that the 1% referenced by Ne’-eman for the adult study in the UK applied to the adults in the US for evidence of a flat 1 percent rate for adults and children, is any less valid than the South Korean study additionally applied to children in the US to support statistics for an epidemic.

    Autism Speaks referenced study in South Carolina will potentially replicate that prevalence among children; that should come as no huge surprise with the current 1 in 47 figure in Utah from more limited current CDC prevalence methodology. But, epidemic or no epidemic, money talks, and the 137 billion likely speaks louder to congress than epidemic for potential appropriate action. Ultimately, if more appropriate strategic actions for needed services and supports are taken, that is what counts the most, regardless of what motivates the action to get there. Interestingly, the meaningful suggested actions toward those goals of supports and services for adults on the spectrum were not too different in the meat of Ne-eman and Wright’s full written testimonies.

    The median household income in the US is close to 50K, so I think it is bit of an overstatement for Wright to suggest that families on average are personally bearing the majority (“burden”) of average $60,000 annual costs. It is more likely government funding and insurance that is funding the majority of cost, and if his family figure is averaged out over 137 Billion, the preliminary results reported from that study in the linked article suggest that costs for caring for adults, is the majority cost, which would be almost entirely funded by the government.

    It will be interesting to see that full study, to see how they determined how many adults are currently in residential care facilities on the spectrum.

    • Sullivan (Matt Carey) December 1, 2012 at 18:12 #

      It is worth noting that at least two of the authors of the Korea study have been vocal against the idea of an epidemic. R.R. Grinker is well known for this stance. Eric Fombonne has, as I recall, papers with evidence against vaccine causation.

      The Korea study is very difficult to fit into an epidemic model. For one thing, over multiple birth years the prevalence is flat. This for birth years in the 1990′s when people claim there was a true rise. Second, the majority of those identified as autistic were undiagnosed–with any disability. The idea that autism is “obvious” so older studies somehow can be compared with new studies has been shown in this case and many other cases to be false.

      • Kate December 1, 2012 at 22:17 #

        I have offered more than a few arguments against an epidemic in a classic sense per environmental toxins or biological determinants but I’m not so sure a “cultural epidemic” can be ruled out. Obviously part of that “cultural epidemic” is related to broadening diagnostic criteria, greater awareness, as well as diagnostic errors and misdiagnosis. I’ve often used the Amish as an example per the comprehensive study done there, that seemed to evaporate after the preliminary results were provided.

        I don’t see the issue there as necessarily one of fewer toxins, but rather one more strongly of a social structure where people can more easily find and understand their social roles, as well as exercise them, without being dropped into a sea of increasing cultural chaos at birth and after.

        There are many other potential factors involved, but that seems the most obvious one too me for what is described as “higher functioning autism” This however, does not explain regressive autism, non-verbal autism, and some of the co-morbid conditions associated with the spectrum. I see more visible common sense potential for a cultural epidemic than whatever the factors are that lead to those more severe symptoms associated with the spectrum. Those are where the research dollars have been focused to date, as they can be more clearly identified and observed as warranting the focus of concern.

        In my opinion the current magnitude of both pro and anti vaccine fears are limiting the research into cultural factors that might be reasonably adjusted in some cases to help others on the spectrum. I guess that part of Blaxill’s comment I agree with, in restrictions of politically correct research, but in an opposite way per effect of culture instead of vaccines, in areas where an approximate control group of culture from the past, like the Amish live in.

        I personally think some of the same cultural factors in South Korea and in the US are similar for increased prevalence, that would not likely be identified in Amish Counties. But, I don’t see that as something most people take seriously, that are focusing on biology and toxins as potential causal factors for what constitutes a disorder as an identified considerable source of disability.

        I see the results of the South Korea study as potential evidence of a “cultural epidemic” where there is literally almost no research dollars focused. I’m not sure anyone else is looking at it that way, or if they are, are being taken seriously. It may be evidence against an epidemic in the classic sense, but is still what may be a rapidly expanding problem in western developing countries, whether it continues to warrant a diagnostic label or not,

    • IamAutism December 2, 2012 at 17:36 #

      There was no attempt in that bilge to refute that Autistics have to cost alot, only a reinforcement of the belief that Autistics cost a lot.

      Autism Speaks made parents believe expensive, useless therapy was best. They jacked up the price of Autism themselves.

      Now I am seeing shills make excuses for cheap eugenicist arguments because the argument is a useful shock argument, which is exactly why it is cheap.

      Autistics are tired of being exploited by Autism Speaks this way. And long-winding dirges by its online apologists will only strengthen their resolve to resist that hate group.

      • Lara Lohne December 2, 2012 at 18:10 #

        After the 4 months of OT my son had, and me sitting in with him during these sessions, I came to realize they didn’t do anything with him that I couldn’t have been doing with my myself at home and without the stress of going to an appointment and without the cost of the therapy itself. We never made it to the top of the waiting list for speech therapy before I decided that it was too much stress, due to the commute and that they kept changing his therapist (three in four months) which reverted him back to square one. The therapists actually advised me to do these things with him at home anyway. Since there didn’t seem to be anything in particular that required specialist training for them to perform OT, my question is rather then parents paying to have a stranger do these things with their child, why not instead train the parents themselves to do them with their child at home?

        There could potentially be a benefit for us going back into OT, and that would be to help get my son potty trained so he can start first grade next year without being in diapers still. My other boys were easy to potty train, they practically did it themselves. My youngest has the ability to control his bladder and bowels, as any time we leave the house and he is wearing pants, he keeps his diaper clean the entire time. As soon as we return home though, the pants come off and the diaper gets filled. I don’t know the first thing to do to help him transition from holding it until his pants come off to holding it until he can release it into a potty chair or the toilet. I tried two summers ago to potty train, after the forth day of no success and taking him to sit on the potty every twenty minutes, he began to develop an anxiety about sitting on it. That is the last thing he needs is more anxiety and stress, so I discontinued. A neighbor who has a little girl with Asperger’s told me that the OT they take their daughter to helped her become potty trained, and that’s why I’m thinking about starting OT back up again. From what I understand about ABA therapy, it also requires no specialized training, just the time and ability and tools to do it, and perseverance to continue every day. I have also heard though, that ABA could have a more damaging effect on children with autism then previously known, because it is essentially training them to work in a way their neurology is not designed to work. Perhaps, rather then focusing on making these children appear normal, we should be more focused on helping them learn to communicate, be polite and have self esteem to accomplish anything and everything that they attempt in life. That was the crux of Mr. Carley’s words, at least what I took from them; autistic individuals can do great things if they are given the self esteem to do so, and allowed to be who they were born to be. In essence, they need acceptance, not training to ‘fit in’. That is true of everyone, NT non-disabled or otherwise. I’ve not heard a lot of talk about trying to make a person with downs appear normal and try to fit in, why is that expected from those with autism, simply because their ‘disability’ is not overtly obvious?

      • Kate December 2, 2012 at 21:59 #

        The care for some people on the spectrum is documented as very expensive particularly in institutional care where costs can exceed 200K per year. On the other hand there are other people who identify themselves on the spectrum proudly announcing how much money they make, and their lofty place on the capitalist ladder. Statistical analysis of any large demographic usually does not apply to the whole demographic. Those details will be released in the full study.

        The actual study referencing the 137 billion annual figure and whatever methodology used to arrive at the 137 billion annual figure and $60K per family figure, has not been released yet, so to this point there is only speculation on how those figures were derived, and no actual methodology to refute, until a full study is produced for analysis of the actual methodology used.

        ABA does not work for everyone, that is a clearly disclosed fact, but the body of research that exists, from a government meta-analysis of that research, indicates that it is net effective therapy for a subgroup of individuals on the spectrum.

        The individuals that are willing to mortgage their homes to continue the therapy for their children, are not likely doing that because the therapy is not observed as significantly effective. And, for those individuals that care more about their children than their homes, they deserve the advocacy efforts that autism speaks has made in the legislative process that, in part, have led to state laws that insure that coverage is provided for those at this point in time, fortunate enough to be covered under a health care plan.

        Those advocacy efforts are priceless for those that have that financial burden lifted, no longer as an ever present serious stress in life. ABA is considered a medically necessary therapy for the safety and welfare of some children who lack self care and present serious self injurious behaviors. Other than that versions of the therapy are used throughout society to enhance positive behaviors for people with or without diagnoses.

        The continued baseless arguments toward Autism speaks per accusations of hate of people on the spectrum, a eugenicist organization, and less offensive but still baseless arguments belittling the efforts of the organization continued to be fueled by the ASAN organization whenever that organization gets a chance to attempt to discredit the organization.

        In the real world outside of online autism communities, for anyone that hears the comments, this lowers the credibility not only of the ASAN organization, but unfortunately what has been expressed by some is that those type of comments discredit the whole neurodiversity and self-advocacy effort as less of a rational effort. While unfortunate, this could be part of the reason the ASAN organization was ignored in the selection process for the recent hearing until public protest was provided for their inclusion.

        Mr. Ne’eman was reasonable enough to provide a fair statistical analysis from the actual highest funded private autism organization in the US, the Simon’s foundation as providing zero dollars to direct adult research as compared to Autism Speaks, but in the less public purview of his interview yesterday in C-Span, he made the incorrect statement that Autism Speaks was the largest private Autism organziation in the world, as the Simon’s foundation is actually the largest private foundation in the US, receiving more funding dollars than Autism Speaks in 2010, as reported by the IACC, and the National Autistic Society in the UK, is larger than those two organizations combined, generating almost twice the funding that those two organizations receive annually, in 2010 equivalent US dollars.

        The 4% family funding services figure from Autism Speaks which is no small amount of money at 2M is often criticized by ASAN, and highlighted by Mr. Ne’eman yesterday to discredit Autism Speaks, but the 0% by the Simons foundation, or the 4% and 144K by the Autism Society, was nowhere to be found in Mr. Ne’eman’s opportunity yesterday to attempt to discredit the Autism Speaks organization.

        ASAN is doing great things for the Autism Community but appears to be closed off from the perception of the rest of the world, when they make these statements against Autism Speaks, that not many people in the real world, outside of online autism communities, are believing to be reasonable.

        And, for those like me that occasionally use Google, and do a few fact checks rather than relying on someone or an organization that presents themselves as an authority on the facts on the internet, it brings the appearance of malicious intent against another charitable organization aimed at helping the same people, which is one of the quickest ways for any charitable organization to lose their credibility in the real world, regardless if Charity Navigator pays attention to it or not.

        Autism Speaks raised 10 percent more money last year than the previous year and was able to increase their family services dollars by half a million dollars. Meanwhile there are people from ASAN organizing protests against Autism Speaks charitable walks with publicly stated hopeful intention that people are not donating and participating like they used to because of their protest efforts.

        Goodwill toward others wins out; more people are walking, and more people are receiving family service grants. Ironically it is some members of ASAN in their protests that express the desire to put a roadblock in that progress. And some wonder why they are ignored at these walks, and even get frowns from some, when they attempt to protest the charitable intentions of others, to help their children and others like them.

        Kanner and Hans Asperger both described autistic syndromes where empathy was impaired. It’s not a mandatory requirement for a 1994+ DSMIV diagnosis, but an obvious impairment for some, even described by some, that some may have no control over. I have no other idea of a possible explanation to explain this phenomenon, and at times it apparently can be those that have these impairments that are completely unaware they have them in the real world of people engaged in the real life process of caring for other people.

        And the phenomenon is certainly not limited to some with autism spectrum conditions as it becomes more common among the general public, with more and more people detached from flesh and blood human interaction, as empathy is not usually a static human strength or weakness. And very possibly a contributing factor to this whole idea of an “epidemic phenomenon”, potentially generated at least in part by new cultural factors, that were not present several decades ago.

        Kanner. originally in his paper “autistic disturbances of affective contact”, provided a hypothesis of a culturally derived phenomenon as a result of cold aloof parents, which unfortunately led to the refrigerator mother theory, however his cultural hypothesis, may still be at least in part correct, as there are many other factors in culture other than parents and genetics that impact measures of empathy, some new in the last several decades, and even in the last century since Kanner first observed what he described as very unusual behavior associated with “affective contact” in an extremely rare subset of individuals.

        Overall, environmental toxins have been reduced in the environment in the last few decades, stress is an ever present factor in the human condition from environmental pressures throughout time, and evolution in the classic sense changes extremely slow per genetics, but culture has in large gained what might be described by some as a mind of it’s own, and no one has any choice but to adapt or not to adapt, regardless of what the consequences may be. Canaries can be associated with toxins but they can also be associated with culture as well, at least in a metaphorical sense.

      • Lara Lohne December 3, 2012 at 03:18 #

        @Kate, your posts are extremely long winded and hard to follow. It sounds as though you are quoting from some statistical report. I’m afraid I am unable to agree with your assessment of ASAN and their attitude toward Autism Speaks. The fact that they withdrew an employment offer from the mother of a child with autism when she asked if her schedule may be arranged to allow her to take her son to his OT appointments and they refused, and even though she was able to make alternate arrangements they still rescinded the offer, shows their utter lack of acceptance of those with autism, their families and the efforts that need to be taken to be able to raise an autistic child. That has done more damage, in my opinion, then anything ASAN may have said about them. And they have a point, they want a voice and are refused one by Autism Speaks, as if having an ASD makes them some how unworthy to know what it is they, as an autistic individual, needs. Autism Speaks is not the definitive authority on ASD. They pretend to be, but they are not. That is the point that ASAN is trying to make. An autistic individual knows and understands their own struggles and the struggles of many others with autism, then any neurotypical person ever could. And there wasn’t anything incorrect about Mr. Ne’eman’s comment regarding the size or influence of Autism Speaks as the largest private autism organization in the world. Most people who aren’t part of the autism community have heard of Autism Speaks, but I doubt many have heard of the others. I have heard myself of others, but never the Simon’s Foundation. I’ve definitely heard of Autism Speaks though. There in lies their influence, even if it isn’t monetary.

  3. Emily Willingham December 1, 2012 at 16:35 #

    I found his comments from among the panelists to be the least cogent or helpful, with one exception.

  4. Kate December 3, 2012 at 09:24 #

    @Lara, I read the story you are referring to; it is an accusation by an individual, who attempted to sue autism speaks, however it only provides one side of the story. The position the prospective employee applied for requires an in office schedule 9 am to 5 pm five days a week; those requirements are still clearly provided on the standard job announcements for a walk coordinator, the position this person applied for, easily found with a search on Google. Per this person’s own report they waited until the day before scheduled employment, on a Sunday by email to attempt to arrange an alternate working schedule to work from home.

    This person’s written civil suit against Autism Speaks, that is a matter of public record, has been dissected by individuals reporting they are legal professionals that do not see it likely accepted as even being heard in a court of law, as currently written, because of reported inconsistencies in what was alleged reported in that civil suit by the individual making the claims. Autism Speaks is not in a position to provide details of this private interaction between this previously potential employee. I haven’t heard anything else about this issue, so apparently it has not yet gone to court, if it ever makes it to court.

    Ari Ne’eman wasn’t just speaking to the autism community, in his interview on C-Span, when he provided incorrect information on what was the largest private autism organization in the world, and attempted to minimize Autism Speaks efforts in providing 4 percent which is 2 million dollars for family services grants, while other top private autism organizations do not match their efforts.

    If Mr. Ne’eman is not educated that there are two larger private funded autism research organizations, than Autism Speaks in the world, he should, if possible, be educated before the next time he is provided a public platform to attempt to educate the general public on information that is incorrect.

    The Simon’s foundation and the National Autistic Society, NAS, in the UK, and those that contribute to those organizations deserve appropriate recognition for their charitable contributions to people on the spectrum. There is the potential that Autism Speaks will surpass the Simon’s foundation in charitable contributions when those numbers are released from the Simon’s foundation for 2011, if not in the coming years, but Autism Speaks has a long way to go, to catch up with the NAS, in the UK, that provides direct educational support to individuals on the spectrum across the UK.

    Autism Speaks is definitely the world’s largest autism research/advocacy organization, but the other notable organizations that do research including the Simon’s foundation, are not engaged in additional advocacy missions nor does the NAS have a research division. As far as I know Autism Speaks is the only notable private autism associated organization that accomplishes both missions.

    Mr. Ne’eman’s criticism in the house oversight hearing of the low nationwide percentage of money directed at research for adult needs on the spectrum was valid and echoed by the founder of Autism Speaks. Autism Speaks has already addressed this issue in funding more research for adults in 2012, as documented on their website, and is well ahead of other research organizations in meeting this goal.

    Autism Speaks is evidenced as working toward some of the goals that Mr. Ne’eman is asking for; it is only appropriate that his professional organization publicly recognizes that rather than looking for an area to criticize that is not warranted.

    A representative from the Autism Rights Watch, another advocacy organization, run by individuals on the spectrum has openly stated that they “deplore” this continued infighting between ASAN and Autism Speaks, and are focusing on a more noble goal of working with other autism organizations in a cooperative effort for the greater good, rather than a deconstructive effort.

    Mr. Wright was respectful enough in his public spoken testimony to state the organization’s goals for cures are only directed at those that are looking for cures; it’s time for ASAN to reciprocate that respect, if possible, to move toward a more constructive place.

    This is the way Autism Speaks describes people on the spectrum, as quoted from the link below; it seems to be a well rounded and fair description of the spectrum but they certainly do not suggest in the description that any individual on the spectrum is the same and can be fully understood by any other person on or off the spectrum, better than that person experiencing their own version of autism.

    “What Does It Mean to Be “On the Spectrum”?

    Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means. Autism Speaks’ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.”

    http://www.autismspeaks.org/what-autism

    Sorry, for my long winded hard to follow posts, and sometimes blunt statements, but I am a Kanner/Hans Asperger type person on the spectrum, not a social small talk person. I rarely speak in real life, and a computer is the only way I get to monologue to express my method of communication, facts I collect along the way, and ideas. If I say anything that can be refuted by other facts, I don’t mind apologizing for a mistake in communication, as it is only an opportunity to learn something new.

    And by the way, I support the good things that Autism Speaks, ASAN, the Autism society in the US, the Simon’s foundation and all other national level autism organizations do.

    I actually enjoy visiting the Simon’s foundation website as a source of interesting information the most; the billionaire founder and benefactor of that organization, Mr. Simon, is an amazing individual, but I would encourage anyone in the position to financially support autism organizations to consider their local autism organizations first, as they usually rely on local support to help others in one’s community, on the spectrum.

    My local organization actually comes close to exceeding the donations received by the Autism Society of America, and a substantial amount of that money goes back into the community to help people on the spectrum. There are likely hundreds, if not more than a thousand, of these local organizations like this in the US, that rarely get any mention in these discussions. Considering my local organization in a modest sized metropolitan area raises 4 million dollars, I would imagine that nationwide these type of local organizations combine somewhere close to a billion dollars a year in charitable funding.

    Autism speaks is a powerful media machine and influential advocacy organization at the national level, but their actual research dollars amount to 4% of the total funded public and private nationwide, per IACC 2010 report, at 18 million dollars. The other 32 million dollars funded was a relative drop in the bucket per the total combined efforts of local autism organizations.

    The actual most significant impact of the autism speaks organization is better awareness that there is any condition associated with autism through their media machine, along with the influential advocacy efforts, per positive legislation impacting people on the spectrum and their families.

    There is likely a trickle down phenomenon generated for the support of local organizations through this awareness effort more than a trickle up impact to fund autism speaks. I never knew I had a local organization until I got involved in the Autism Speaks conversation, and looked for one.

    Bob Wright’s corporate media and business leadership experience is what made that happen; he has never been paid a penny for 7 years of those volunteer efforts; if more people like him, and the founder of the Simon’s foundation, with that type of influence and expertise took on a special interest of helping others after retirement from the corporate world, the potential good that could be done is almost unimaginable.

    Even if it were only the special interest and recognition for the achievement of helping others that motivates that kind of effort, the positive impact to others in need is still the meaningful effect. It blows my mind that people are actually still attacking the volunteer efforts of Mr. Wright and this organization, but it doesn’t anger me, as I understand many are not aware of the finer details I am aware of, as this has become a special interest of mine.:). If you made it this far, I hope your head does not hurt.:). If I was capable of talking like this in real life I would likely have got the rolling eyes in real life along time ago.;).

    And thank you Mr. Carey for allowing me to share an opinion here, I recognize my communication style is strange, but hopefully helpful to someone on the spectrum reading here, or maybe even others that may be interested in facts and figures associated with this Autism Speaks ongoing controversy and general advocacy efforts. If you don’t mind I might drift in and out of here at times to respond, but I promise I’m not attempting to over take your blog with words, facts and figures:).

  5. Low Budget Dave December 3, 2012 at 11:02 #

    There are several different arguments here, but it seems that you agree with Mr. Wright on everything but the details and statistics. The statistics are hard to come by, and easy to refute, because every case of autism (down to the details) is so different.

    The definition of “epidemic”, for example, is subject to debate. Is 1% an epidemic? How about if it increases to 1.1% If it were something you could “catch”, these would be frightening numbers.

    The percentage is clearly increasing, and the diagnosis is (was) also clearly broadening. Both can be true at the same time.

    Remember that one factor for increased risk of autism is age of the father. In the years 2000 to 2005, there was a huge spike in the number of autism cases diagnosed, just when the bulk of the baby boom is turning 50. It is no surprise that their late-in-life children are more likely to be autistic, and also no surprise that the autism is more likely to be diagnosed.

    The Korea study in many ways supports the idea that the epidemic is real, but does not cross cultures. (Although Korea had a similar baby boom after 1953, the trend of giving birth later in life is much less prevalent there.)

    • Sullivan (Matt Carey) December 3, 2012 at 18:57 #

      “but it seems that you agree with Mr. Wright on everything but the details and statistics.”

      Actually, this is not an accurate description. Thanks for giving me the opportunity to correct this misconception.

      I believe that one must present the best information possible. Not one set of information for one argument and another set of information for a different argument. This isn’t a detail. This is a basis for how to approach the discussion.

      I prefer not to work within the “costs of autism” framework. But if it is going to be used, give real world examples of where changes can be made. The obvious example I presented is in supporting adults to move from un- and under-employed to full employment.

      Beyond that detail is a fundamental problem: leaving such examples out leaves much to be implied. And it’s a pretty direct implication: We think there is an epidemic, this costs a lot of money…where is the gentleman from New York implying that focus should be directed? Where it is already directed. I would suggest–Ask for more. Including ask for more to serve a population that is larger and far more diverse than previously thought.

      While not discussed directly in the above article, Autism Speaks has too often taken a position which is not respectful of the population it seeks to serve. The example I am thinking of specifically right now is the “I am autism” video which thankfully is gone and never should have been released.

      These are fundamental issues–consistency and respect. I.e. the foundation, the base from which one acts. Not “details”, or something added to the top or end of a discussion.

  6. lilady December 3, 2012 at 17:48 #

    Here, from the Autism Speaks website, is Bob Wright’s written transcript of his testimony before the Congressional Oversight Committee….It is, IMO, rather innocuous.

    http://www.autismspeaks.org/sites/default/files/docs/gr/rcw_ogr_testimony.pdf

    Here, is where Bob Wright *expands* on his comments, using the cringe-inducing phrases lifted right out of the AoA playbook…”Autism Epidemic” and ” AutismTsunami”.

    http://video.msnbc.msn.com/mitchell-reports/50029167#50029167

    While Mr. Wright acknowledges (somewhat), that changes in diagnostic criteria, earlier diagnosis of ASDs and diagnostic substitution are responsible for the “Autism Epidemic and the “Autism Tsunami” (/sarcasm), he still holds to the mistaken and false belief that *something* in the postnatal environment, has caused the increases in ASD diagnoses. I suspect that he’s trying to appease his daughter Katie, who is totally and absolutely convinced that vaccines caused her son’s autism. He brought Katie to the hearing and pointedly acknowledged her presence (“seated behind me”) and pointed acknowledged her *opinion* in his opening remarks at the Hearing.

    Let’s not forget the schism that occurred when Autism Speaks, in an effort to not *offend* any contributors to their organization…and to *appease* Katie Wright and her colleagues who still share the opinion that vaccines are linked to the onset of autism:

    http://www.nature.com/news/2011/111102/full/479028a.html

    • Kate December 3, 2012 at 20:55 #

      The potential that *something* in the postnatal environment, whether or not there is an autism epidemic, or how one measures an epidemic, are not concrete measures that have been conclusively determined, per ASD’s. It’s a common scientifically supported hypothesis that environmental factors are at least in part associated with the development of ASD’s. The degree of and specific environmental factors have not been conclusively determined. That does not make it a mistaken, false hypothesis or belief that something in the postnatal environment has caused the increases in ASD diagnoses.

      Autism Speaks is an arch enemy of AOA for their support of the benefits of vaccines out weighing the known risks, for most individuals. However, the fact remains that there are subgroups of individuals with severe adverse effects linked to vaccinations; some potentially associated with immune system problems, but not proven as a causal factor for autism. The identification and safe vaccination of those individuals is still a real concern, regardless if it is a rare subgroup of individuals. Autism speaks determined the cost/benefit of continuing to research this concern was valid; others held different opinions and left, including supporters that wanted the same level of concern that AOA gives this issue.

      The Autism Tsunami metaphor came out of a news publication, specific to the estimated number of young adults with autism moving into the adult population. AOA doesn’t own the metaphor; it is extreme but it leaves a lasting impression that these adults that are going to be in the need of transition into employment and housing are real and a pressing concern that cannot be ignored.

      • Sullivan (Matt Carey) December 3, 2012 at 21:25 #

        ” That does not make it a mistaken, false hypothesis or belief that something in the postnatal environment has caused the increases in ASD diagnoses.”

        We know that social factors are involved with much, if not all, of the increase in diagnoses. Also, the data available point away from any single-exposure as a cause of the increase. So, it is not appropriate to talk about something as the cause of the increase.

        Also, most evidence points to prenatal exposures.

        Also, environmental risk factors are not by necessity tied to an increase. One failing of advocacy groups is continually trying to focus on correlating time trends of exposures and increases in diagnoses. Of whatever environmental risk factors may be involved, some, most or all may be constant with time or going down (e.g. congential rubella syndrome).

        “Autism Speaks is an arch enemy of AOA for their support of the benefits of vaccines out weighing the known risks, for most individuals.”

        AoA is critical of Autism Speaks, this is true. Doesn’t make them enemies, arch or otherwise. AoA is a blog.

        However, the fact remains that there are subgroups of individuals with severe adverse effects linked to vaccinations; some potentially associated with immune system problems, but not proven as a causal factor for autism. The identification and safe vaccination of those individuals is still a real concern, regardless if it is a rare subgroup of individuals.

        Yes. But this is an autism site. I appreciate the needs of some to avoid vaccination. Many of these people are the same ones who are at extreme risk from vaccine preventable diseases. Doctors working with some of these individuals are usually very keen to insure that everyone around the at-risk individual is vaccinated. And this is one of many points where groups represented by the Age of Autism blog fail precisely those people they claim to represent.

        “The Autism Tsunami metaphor came out of a news publication, specific to the estimated number of young adults with autism moving into the adult population.”

        The “Tsunami” language came about shortly after a very vocal vaccines-cause-autism advocate was forced to abandon his previous favorite phrase for autistics: “Train Wrecks”.

        Claiming an “autism tsunami” focuses attention away from undiagnosed and underserved adults. In addition it paints autistics as “others” who are wreaking havoc on society. I do not respect the use of the term.

      • Sullivan (Matt Carey) December 3, 2012 at 21:52 #

        At present there is no hard data to say that there is an actual increase in the fraction of the population who are autistic. There is good evidence, compelling evidence, that many people were missed in previous generations.

        There is a reasonable expectation that environmental risk factors are not confined to something new. Older parental age is not new, the fact that more people are having children later is. The possibility that short times between pregnancies could result in increased risk is not a new factor either.

        So, one should be looking for those missed in previous generations. One should be looking for possible environmental risk factors, including those which may not be new or increasing. One should be looking at genetic risk factors, even though genetic markers might be used in ways I do not support.

      • Lara Lohne December 3, 2012 at 21:26 #

        I, personally, think the costs of care for an autistic individual is irrelevant to what actually needs to be done. This is a pointless conversation. While I understand that when it comes to government and politics money talks, when it comes to what really needs to be done, debate is a waste of precious time.

        There are individuals now that have autism and need support, and not only children, but adults, many of them, as well. That being the case, this cause/cure and cost of care discussion is putting the cart before the horse a bit in my opinion. Let’s focus first on getting the assistance and supports in place to help out these individuals across the lifespan, and once those systems are in place, then we can look at the causes. Nobody will disagree, I think, that what Mr. Carley said is correct, we are not in the midst of a public health crisis, but a services crisis. There just aren’t enough services available to help those who need it. And while Mr. Ne’eman and Mr. Carley are clearly not those who need assistance with education and employment, they don’t necessarily represent the majority of adults, young and old, who have ASD.

        Obviously we aren’t speaking about those with profound ASD that also have intellectual disability, but those who are functional enough, can reason and understand, but, like ‘Joe’ in Ari’s example, may be non verbal and have no means to communicate with the general population and that population assumes lack of ability to verbalize means lack of intelligence or of anything to say or contribute. Carly Fleischmann is an excellent example of the potential these individuals actually to have, she runs a blog, does Facebook, has written books, has public speaking engagements and is completely non verbal. Yet she is able to communicate. The services and support that her family was able to provide her because they had the financial resources to do so is what every other non-verbal autistic individuals needs. Unfortunately not all families have their own personal resources and rely on public assistance, which just isn’t there for them.

        I suppose my son is fortunate, while his speech is sometimes awkward and quirky, he can speak and make himself known and understood. He’s also only five years old so that will improve as he grows up. But what about those who are already grown up, can’t speak, yet have so much to say and contribute? These are the people who need a voice because they can tell us what they need. ASAN is attempting to get services to give them a voice. Autism Speaks, not so much since most of their research has gone toward finding a cause. The cause can wait, but the individuals who need help now, and are being left behind, cannot.

  7. lilady December 3, 2012 at 22:31 #

    If Mr. Wright does not wish to be identified with AoA, perhaps he should stop using those cringe-inducing “Autism Epidemic” and “Autism Tsunami” terms.

    When the “Media Director” and other *journalists* post on AoA, they invariably use those terms and when the Media Director a.k.a. “the bot” spams science blogs with her walls of words, she uses those same terms.

    Recently, I posted back at the Media Director about her use of those terms and the dreadful posts that appear at *opportune times* that “reminds us” of these dreadful “Autism Epidemics” and “Autism Tsunamis”:

    “No you didn’t write about the autism tsunami, Ms. Dachel. You used Hurricane Sandy which impacted millions of people in the northeast and caused the deaths of hundreds of Americans, as yet another excuse to post on AoA.

    You sat in your warm comfortable home in the midwest, totally ignorant of the homes and lives lost, swept away by Hurricane Sandy.

    You and your fellow *journalists* at AoA, always tie in national holidays, national days of remembrance and national emergencies with downright ugly and crass articles about autism.

    There’s a whole world out there Ms. Dachel, of parents who actually devote their time and efforts to develop and expand programs for children as they “age out” of school programs, so that their adult autistic children will have the opportunity to live out their lives with dignity and as full members of society.

    Rather than spending time lamely trying to link vaccines with the onset of autism, you and your crew ought to *think* about real advocacy on behalf of autistic children and adults.”

    (Upon *reflection* these terms may not be as bad as the the Thanksgiving Feasting On A Baby” picture that appeared on AoA several years ago (/sarcasm).

    When credulous parents demand increased funding to study post-natal environmental causes of autism…they have a specific “culprit” It’s always “teh ebil vaccines” (Thimerasol, Al adjuvants, foreign protein from fetuses, latex in syringes or the ports of vaccine vials and….).

    No Katie, Bob Wright is making a feeble attempt to reconcile with his anti-vaccine daughter by straddling the fence between science and pseudoscience.

    • Kate December 4, 2012 at 02:14 #

      Post Natal Environmental factors are not limited to toxins; they include the cultural environment as well. Mr. Wright expressed the belief that something in the environment was causing an increase in ASD’s. My point was there is no conclusive evidence either way at this point, and his general belief has not been proven or disproven as false. I personally see the bulk of any increase as cultural in nature, but there is the potential of other factors of correlation in the environment making what might be a condition that would not be diagnosed as a disorder, one that is diagnosed as a disorder. The folks that do the research are tasked with determining that.

      I realize that AOA, is an online publication, but it is a little more than a run of the mill blog, in the influence it has on some in the autism community. Arch enemy is not a term that I know of that Mr. Olmstead has used, but I can’t see where his description below, lowers the bar very much from the metaphor I used to describe the relationship:

      http://www.ageofautism.com/2011/08/the-awful-truth-about-autism-speaks.html

      “The Awful Truth About Autism Speaks

      “It is a leech upon the autism community, sucking resources and walk-a-thon energy away from cash-strapped families struggling to cope. If there was any value in its “awareness” campaign, it has been achieved; AS has no apparent further reason for being.”

      By Dan Olmsted”

      I can see the offense people take in emotionally laden metaphors to describe anything about autism, however, this is what drives people to action, per voters and politicians; facts and figures are usually the background noise, that many do not pay attention to.

      There is almost nothing known about adults, undiagnosed, misdiagnosed or diagnosed late, Mr. Wright made that clear in his testimony. All we have is books by Carley, Robison, and others, for the most part that are enigmas rather than what could be likely considered any real representation of those that are not represented at all.

      Online autism communities by statistics that are available, represent a very small part of that potential adult spectrum; the rest, for the most part are likely invisible per any potential of a diagnosis or personal knowledge they might be on a spectrum. But, some are likely mis-diagnosed with other conditions. This issue warrants research.

    • Lara Lohne December 4, 2012 at 05:17 #

      @lilady, you will get a kick out of this bit of news: During the congressional hearing, those who were watching the closed captioning noticed a strange phenomenon. Whenever the phrase ‘autism epidemic’ was used by someone, the closed captioning printed it as ‘optimism epidemic’. Because of that little bit of error in wording, some bright and funny individual began a Facebook page called ‘The Optimism Epidemic’. It has become the place for hope and inspiration and positive support for people in the autism community. I joined! I know you don’t Facebook, but thought you would enjoy that all the same.

  8. lilady December 4, 2012 at 15:30 #

    (apologies to Kate for referring to her as Katie)

    Perhaps I did not make myself clear in a prior post. I am all for post natal investigation of the environment for possible triggers that can impair a child…but that is NOT the type of post natal environment investigation that the anti-vaccine organizations want. For them and their groupies, it is always…and always will be…”teh ebil vaccines”. (Rhetorical question)…just how many more investigations and studies will it take, for them to back off their totally bogus theories that associate vaccines with autism?

    @ Lara Lohne: Thanks for that comment. Now’s the time when I wish “I do Facebook”. :-)

    • Sullivan (Matt Carey) December 4, 2012 at 20:57 #

      One frustration is that any non-vaccine environmental risk factor identified as possible is mocked and derided by the very groups who claim to want environmental risk factor research.

      The “optimism epidemic” and the “rise in optimism” were closed captioning errors during the C-Span call in program with Ari Ne’eman.
      http://paulacdurbinwestbyautisticblog.blogspot.com/2012/12/the-optimism-epidemic-autistics-on-c.html

      It was a nice coincidence–as there was a rise in optimism from the autistic community, this transcription mistake was made. (anyone who watches with closed captioning knows there are a lot of these mistakes. This one was amusing.)

      • lilady December 4, 2012 at 22:29 #

        Matt: Not only do they deride the post-natal environmental studies, they also deride the intrauterine environmental studies…because it detracts from their fixations about vaccines causing autism.

        Thanks so much for that link. It really is hilarious. :-)

      • futuredave5 December 5, 2012 at 10:53 #

        I could actually use some of that optimism that seems to be going around. Let’s hope it is contagious. In fact, if optimism can be correlated to vaccines, then I may throw caution to the wind and stock up on MMR for Christmas.

        I think parents should be forgiven for associating known environmental changes with observed behavior changes. Our brains are wired to learn that way. We see our children suffer, we look for a cause.

        For people like me (my son had an adverse vaccine reaction), it is easy to confuse correlation with causation. We know the science, it is just easy to be misled by emotion and personal experience.

        When people in a some other country have a high percentage of particularly bad flu, it is an “outbreak”. When it is your country, it is an “epidemic”.

        Congressional hearings are supposed to balance the emotional with the scientific. If, in fact, rates of autism have been stable for the last 50 years, Congressional hearings would be a good place for someone to document the statistics. Otherwise, it is just another Washington drum circle: A lot of sound, but little information.

        It seems a shame to me that we have to choose between support and research. We are the richest country in the history of the world, but every dime that goes toward research seems to get taken away from group homes, or Medicare, or some other necessary program.

        Even if you agree with the “lost productivity” numbers, the DoD estimates that it costs about $347 billion (over its lifetime) to buy a submarine, which is a cold war relic used to subsidize defense contractors.

        Maybe we could scrimp on submarines for a few years.

      • Sullivan (Matt Carey) December 5, 2012 at 14:51 #

        If, in fact, rates of autism have been stable for the last 50 years, Congressional hearings would be a good place for someone to document the statistics.

        This hearing we heard someone call for an adult autism prevalence study. To my knowledge this is the first time such a call has been made in one of these hearings. The call came from an autistic. Parent advocates have spent the last decade claiming they know the prevalence of autism in adults. I wish a member of congress applied the scrutiny to that question as we as applied to some of the government panelists. “Mr. So-and-so, you’ve wasted 12 years of my time”

    • Kate December 5, 2012 at 06:57 #

      No problem, Lilady, I was hoping you weren’t suggesting I was Katie Wright.:). I see the real remaining vaccine issue as why do some children get severely ill after vaccines, instead of why do vaccines cause autism; there is nothing necessarily new there, but it is definitely better identified, amplified, and repeated like everything else on the internet by those that experience and report real and difficult life experiences.

      Most every incidence publicly reported of children falling ill after vaccines related to the issue of autism has been associated by those reporting those incidences with what is described as regressive autism.

      I’m not sure how the jump was ever made to attempt to correlate those reports with the rest of the spectrum, or why no one seems to amplify that point, as regressive autism is not a well identified statistical group, but never the less understood as a relatively small subgroup of the spectrum.

      Overall, autism prevalence statistics do not specifically measure increases or decreases of regressive autism.

      A significant finding was the research that showed abnormal brain growth associated specific to males described with regressive autism; perhaps for some reason some of these children are more likely to fall ill when vaccinated, but the vaccines are definitely not causing the abnormal brain growth if that is a factor associated with regressive autism.

      The correlation of illness after vaccines that has been consistently reported and identified associated with regressive autism deserves continued appropriate research, but I’m not completely sure why the conversation ever even extended beyond regressive autism, as this was the only sub-group that even the discredited Wakefield research pursued, or how an “epidemic” if it existed could possibly be linked to it, with no reliable statistics for overall prevalence for regressive autism.

      From all available statistics that exist, it is not likely more than 1 out of 1000 children; If that is the case it wouldn’t be that surprising not to find an individual in a county of 1000 Amish children without a case of regressive autism, or any other demographic group of 1000 children.

      However, it is possible for the majority of the demographic of parents that have ever had a child with regressive autism, in the Western developed world, that fell seriously ill after taking a vaccine to report that at single points on the internet, like AOA, Safe minds, etc. Except, for some rare demographics like the Amish who do not have internet access.

      I’ve heard some people state that hundreds of thousands of people are reporting their children had serious adverse reactions from vaccines associated with autism. I’ve also heard there is a dramatic increase of filicides associated with Autism since the “living everyday with autism” video.

      The internet has an interesting effect on human perception, sometimes regardless of empirical data. The internet provides an avenue for the “perception” of all types of “epidemics”, as information usually does not fully go away and can be repeated for over a decade with the perception as new information. The Walker research on GI issues and Vaccines from 2006 and the “Daily Mail” continuing to report that research as happening yesterday, is a good example of this phenomenon, but only one of almost unlimited other potentials for a headline, a reader, and potential unwarranted conclusions. I think there is an “epidemic” of too much information, that I have been infected by but continue to attempt to fight off for serious information related disorder/disease:). Coming soon to a DSM in the future, “Information Disorder”.:).

      • Lara Lohne December 5, 2012 at 07:31 #

        @Kate, based on everything I have read relating to early development of autism characteristics, it is estimated that 20 to 40% of children regress, meaning they appear to be developing normally, some even well ahead of the developmental curve for their age, have developed language or at least 5 words, for at least three months and then they lose skills. It is generally found that those who regress are between 12 months to two years of age. Which is typically the time the first MMR vaccine is received. Hence the ‘correlation’ of MMR to autism.

        I wouldn’t actually consider 20 to 40 percent of children which go on to develop autism as a small subset, it’s rather a significant amount of the whole, and generally, these will be more severely affected then those who showed characteristics from birth. With my son, he was different from birth, I knew he was, simply because I had had five other children before him. But he also began to regress about 14 months of age as well as began to develop ritualistic and repetitive practices. His regression wasn’t sudden or over night, it was gradual, until suddenly I realized he was no long talking and had seemed to become very introverted, more so then he was anyway. Perhaps my son is an enigma. The thing is, he didn’t have any vaccines, after his 6 months routine ones, until after he was involved in Early Intervention for developmental delay. His regression happened just the same as everyone else’s (when they are honest about how it actually happened) at the same age and without the vaccines.

        Your language is appears sympathetic to their cause, almost apologetic to a point. There are not any physical ailments, sickness that are associated with autism so I’m not entirely sure what you’re talking about. There are common co-morbid conditions that may manifest in some people with autism, but they are certainly not connected to autism by any stretch. My son, for example, is extremely healthy, has a touch of allergy to something (haven’t figured out what yet) but he is robustly healthy and thriving. He doesn’t even have bowel issues. Nothing changed around him at the time of his regression, only he changed, and it was subtle and slow, until I finally realized it about a year later that he wasn’t progressing and had lost skills. That is when I began searching for an evaluation, and it unfortunately took me six months to get it. If he had been seeing a pediatrician regularly, this story might be different, I might have fallen back into the anti-vaccine mind set and blamed the vaccinations he would have received around the same time that his regression began. Perhaps then, it’s fortunate, that he regressed without vaccines, to save me that agony and to make sure I made the best health decisions for him based on facts, rather then anti-vaccine nonsense and superstition, because for some of them, that is what it amounts to.

        There are not hundreds of thousands of people claiming their children became ill and developed autism after vaccination, there aren’t even tens of thousands. There are possibly a few thousand that make this claim, and when they are compared to the rest of the autism population, their numbers are extremely small indeed, they just make the most noise and that makes their numbers appear larger then they really are. I’d be interested to find out if there is history of regression in adults with autism, like there are in today’s generations. Of course I think before we can learn that, we first need to learn what the prevalence of autism is among adults today. This isn’t a new disorder, it’s always been with us, it just hasn’t always been recognized for what it is in previous generations.

  9. Kate December 5, 2012 at 13:20 #

    @ Lara,the largest, most recent study, released this year linked below, a meta-analysis of 85 studies, over the course of decades, suggests close to an average of 25% for regression of language. A limitation though, is some of the studies are inclusive of only individuals with autism disorder, and many of the studies were conducted before the DSMIV broader diagnostic criteria were published. But, if one uses that average, from this recent study, as a standard for regressive autism specific to language, it is about a 3 in 1000 statistic, if one were to base that on the most current prevalence statistics. But, that could be overstating the current prevalence of regressive autism specific to language considering the broadening of the diagnostic criteria. My 1 in 1000 statistic estimate was based on an older CDC statistic, but this more recent study seems to be the current standard as an estimate as it identified close to 25,000 people on the spectrum for study.

    http://www.ncbi.nlm.nih.gov/pubmed/22855372

    I am not sympathetic to the idea that vaccines are the cause of autism as I find the current state of research convincing they don’t. My last post was in support of my pro-vaccine opinion, however I know several people on the spectrum who report their children on the spectrum experienced serious side effects from vaccines that do not blame the vaccines for the autism, but some definitely blame the vaccines for the serious illness associated with the side effects.

    Some suspect their children’s immune system problems may be associated, so I am sympathetic to those type of concerns, respect them, and the limited research associated, regardless of how rare these incidences may be. My child did not make it as a result of a co-morbid condition associated with Autism; that had nothing to do with vaccines, but I would never suggest I understand the parameters of how someone’s child’s experience in life is suppose to match up with, as order in this existence is a happy illusion for those fortunate enough to possess some of it.

    I was one that was fortunate enough to possess a great deal of that order, but my child was blessed with none of it, in his short life. There was no possible way to gain that perspective without living that experience. That’s not a tragedy, it’s just reality as congenital anomalies and genetic mutations are the price of adaptation and survival; the only other rationale I could think of was to blame myself, but if I did that I would be blaming every ancestor I had overcoming their potential much harsher realities for my chance at existence. I determined they deserved more respect than that.

    I’m not sure if you thought I was agreeing with the reports of dramatic increases in filicide and hundreds of thousands of reports of vaccine related side effects, but if I did not make my point clear, I was making a similar point you were making in that the amplification of voices on the internet exceed real data. And the fact that this internet “amplification” phenomenon is far from limited to the vaccine controversy.

    • Sullivan (Matt Carey) December 5, 2012 at 14:55 #

      If the rise in estimated autism prevalence is due to an environmental factor causing a “true” increase via autistic regression, almost all of autism today should be regressive.

      Also worth noting, there is a big difference between an autistic losing language skills and an apparently not autistic regressing and presenting as autistic. I am not sure how well studies capture that.

      • Kate December 6, 2012 at 00:24 #

        The highest percentages of regressive autism reported were in limited clinical samples of autistic disorder at 50%, decades ago along with the often cited 70% of intellectual disability that was reported decades ago in those limited samples. Both factors have been associated, and intellectual disability is one subgroup of co-morbids that has actually decreased in recent CDC government statistics. It seems obvious to me that is, in large part, a result of broadening the diagnostic criteria and greater awareness and access to diagnoses, as intellectual disability is hard to miss in a child.

        But, if the Mercury based preservative conspiracy theorist folks had not extended their theory out to the whole spectrum of prevalence statistics and instead limited it to regressive autism, where it seems that is where most of the direct reported allegations were and are, they might have used that as an argument that the removal of the preservative from childhood vaccines is why intellectual disability has decreased from 41% to 38% of government statistics in the middle of the last decade. Of course, that isn’t an “epidemic” difference, but at least some evidence there is currently no epidemic specific to regressive autism, where the bulk of the allegations have been made.

      • Sullivan (Matt Carey) December 6, 2012 at 17:42 #

        My view is that were I a parent who believed in vaccine causation for my child, I would be very annoyed with the leadership of those organizations. Rather than move with the data and keep themselves relevant from a scientific point of view, they stayed with the vaccine-epidemic viewpoint. Autism Speaks took the position of “there may be small susceptible populations”, a point which is defensible because one can always claim that the size of the “susceptible population” is smaller than the epidemiology studies could detect.

        Such a move would have required a few things–giving up on the vaccine-epidemic, which is accepting that they made a mistake, working with the rest of the autism communities rather than acting as they are the spokespeople for the autism communities, and more. I can’t see these groups accepting any of the above points.

      • futuredave5 December 6, 2012 at 20:01 #

        I have never thought of ‘Autism Speaks’ as one of the anti-vax groups. Maybe I have just missed it, but most every time I hear their name, it is followed by some sentence about how autism research is underfunded.

        I know there are a number of people who resent ‘Autism Speaks’ appointing themselves our spokesmen. As far as I can tell, though, they seem to be doing a pretty good job.

        Not everyone is happy. But I have never seen everyone happy about anything.

  10. kate December 6, 2012 at 22:39 #

    For the first several years much of Autism Speaks Focus was on Regressive Autism. The founder made no secret at that time that was the organization’s main focus: children like his grandson and the families of those children that were disenfranchised. The word disenfranchised is a key point, as these conditions of regressive autism are rare enough in the general population where at that time not much media focus was on the condition other than a few famous people reporting their children had that condition, along with the vaccine concerns. Before that point in time Andrew Wakefield was the only person looking for answers, so he became a hero to some of those parents. Autism Speaks has probably done more to mediate this situation among the general public than any other organization because they followed a defensible path, that still acknowledged valid concerns of parents voicing concerns associated with vaccines.

    From a technical standpoint if one reads the written testimonies autism speaks does the best job of addressing the concerns of all parties, in a respectful and non-critical way. Mr. Wright’s statement that there was a public health crisis and a public services crisis did not invalidate the concerns of the families and individuals on the spectrum who do have significant co-morbid illness, and behaviors associated with a condition that are dangerous to their health. And it also did not invalidate the concerns of those whose focus was on enhanced public services and support.

    As soon as people’s concerns were invalidated whether they were the public services crisis that was not addressed by Mark Blaxill or the public health crisis that was invalidated as not a concern by Carley and Ne’eman, potentially half the people in the room stopped listening to the rest of anything that was said in their testimonies, as they feel their child or their concerns are being completely ignored.

    ASAN historically shuts people out of the process that do not agree with their viewpoints, with no explanation offered at times. Those accounts are numerous from people on the spectrum that attempted to respectfully address concerns of some of the organization’s viewpoints. The same is true for the Grasp organization, as one must go along with the viewpoints of that organization to be accepted there as well. Autism Speaks appears to be working hard to address the concerns of the full spectrum, and does not appear to be unwilling to change, within reason, when it is brought to their attention they have crossed the offensive lines of others.

    There is underlying concerns that these two self advocate organizations don’t really want to be associated with people on the spectrum that are more severely impacted. While ASAN never explicitly identifies that impression, Michael John Carley, from GRASP is not shy about explicitly expressing it, per his statement on NPR in the link and quote below. I don’t see the statement below any less potentially offensive than Burton’s statement in the hearing about people on the spectrum being a burden on society. A major difference is that self-advocates don’t usually call out other self-advocates when they cross the line of reasonable offense toward others on the spectrum. There function is more of support groups for each other, which is understandable, but doesn’t always work well outside of the identified, sometimes unspoken parameters of the those deemed acceptable as part of the support group.

    There lies the corporate leadership advantage of Bob Wright, in his organization; people can feel free to express discontent or disagreement with that organization, in a respectful manner, and not expect to be shut out of the process. As a result Autism Speaks funding continues to increase, as well as the money they now are able to fund for family services, as it was half a million dollars more in 2011 than 2010.

    Unless GRASP and ASAN want to fall under the same fringe elements of the vaccine epidemic folks, they might consider changing with the times, as all concerns of people on the spectrum are becoming better identified and addressed by organizations like Autism Speaks, and most everyone appears to be moving toward one consolidated diagnostic label, if they want to continue a diagnosis helpful for potential services like protection under the ADA.

    http://www.npr.org/templates/story/story.php?storyId=123527833

    “But the change is going to be hard for some people with Asperger’s, says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger’s From the Inside Out. “I personally am probably going to have a very hard time calling myself autistic,” says Carley, who was diagnosed with Asperger’s years ago.

    Many people with Asperger’s take pride in a diagnosis that probably describes some major historical figures, including Albert Einstein and Thomas Edison, Carley says. Under the new system, those people would represent just one extreme of a spectrum. On the other extreme is “somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow,” he says.”

    • Sullivan (Matt Carey) December 7, 2012 at 01:58 #

      “For the first several years much of Autism Speaks Focus was on Regressive Autism. The founder made no secret at that time that was the organization’s main focus: children like his grandson and the families of those children that were disenfranchised.”

      They also made no secret that they were focused on vaccines. Here’s a bit from the main page of their website in 2005:
      http://web.archive.org/web/20050831144510/http://www.autismspeaks.org/autism/index.asp

      Current research indicates that autism has a strong genetic component and may be triggered by environmental factors. Mercury, including the preservative thimerosal, is among the environmental factors currently under scientific investigation. Cure Autism Now (CAN), Autism Speaks and the National Alliance for Autism Research (NAAR) will support and fund research that investigates all theories surrounding potential causes of autism, including whether there is a link between mercury and autism, and we invite researchers to submit proposals in this area.

      Next to it is a big box discussing how David Kirby (whose book promoting the thimerosal/autism hypothesis) had just been on TV in a “debate” about autism.

      “Before that point in time Andrew Wakefield was the only person looking for answers, so he became a hero to some of those parents. “
      Mr. Wakefield was looking to connect the parent reports that came to him though an attorney to his own failed theory about GI problems being caused by persistent measles infections due to vaccination.

      Mr . Wakefield pushed back research on regressive autism about 10 years. People avoided the topic because of the mess he made of the story. Too bad, as people were looking at regressive autism even before he came on the scene. E.g. http://www.ncbi.nlm.nih.gov/pubmed?term=1956739 and http://www.ncbi.nlm.nih.gov/pubmed?term=PMID%3A%207680325.

      “From a technical standpoint if one reads the written testimonies autism speaks does the best job of addressing the concerns of all parties, in a respectful and non-critical way. “

      His oral testimony was quite critical. He also resorted to straw man arguments where he spoke for the federal members who had left. Perhaps that is persuasive to some, not to me.

      “As soon as people’s concerns were invalidated whether they were the public services crisis that was not addressed by Mark Blaxill or the public health crisis that was invalidated as not a concern by Carley and Ne’eman, potentially half the people in the room stopped listening to the rest of anything that was said in their testimonies, as they feel their child or their concerns are being completely ignored.”
      I’ll come back to this later, as it appears you are one of these people who only listened to part. That said, if Mr. Blaxill’s supporters stopped listening when the self advocates spoke, shame on them. I can tell you the self-advocates and the parents who are allies with them were listening closely to all that was said.

      “Autism Speaks appears to be working hard to address the concerns of the full spectrum, and does not appear to be unwilling to change, within reason, when it is brought to their attention they have crossed the offensive lines of others.”

      Really? Let’s see, it took years of pressure to get Autism Speaks to remove two videos. Autism Speaks did so quietly and without apology. I’ll take that over not removing them, but it doesn’t speak to an organization willing to change when something is brought to their attention. More of an organization forced to change.

      “There is underlying concerns that these two self advocate organizations don’t really want to be associated with people on the spectrum that are more severely impacted. While ASAN never explicitly identifies that impression, Michael John Carley, from GRASP is not shy about explicitly expressing it, per his statement on NPR in the link and quote below. “
      I assume you tuned out for Mr. Ne’eman’s testimony. He does not distance himself from people “more severely impacted”. Just because he does not chose to refer to humans as “more severely impacted” does not mean he does not take their concerns to heart.

      “There lies the corporate leadership advantage of Bob Wright, in his organization; people can feel free to express discontent or disagreement with that organization, in a respectful manner, and not expect to be shut out of the process. “
      Again, Really? I can think of three high level executives who have left in recent history. Two resigned over issues involving vaccine research and one left under very sudden and not well explained circumstances.

      “Unless GRASP and ASAN want to fall under the same fringe elements of the vaccine epidemic folks, they might consider changing with the times, as all concerns of people on the spectrum are becoming better identified and addressed by organizations like Autism Speaks, and most everyone appears to be moving toward one consolidated diagnostic label, if they want to continue a diagnosis helpful for potential services like protection under the ADA.”

      I am not autistic but I disagree with the image Mr. Carley appears to be painting with this. At the same time, I note that you are using this to paint both GRASP and ASAN with comments from GRASP. This is particularly troublesome given the direct statements to the contrary in Mr. Ne’eman’s testimony.

      “A major difference is that self-advocates don’t usually call out other self-advocates when they cross the line of reasonable offense toward others on the spectrum.”

      I would encourage you to seek out some self-advocate discussions. You appear to not have much experience with them.

      • Kate December 7, 2012 at 07:23 #

        I did not like the two videos in question, but I would have never seen them if not introduced to them in online autism communities, by self advocates after Autism Speaks removed them from their website. Autism Speaks was approached by members of the “Aspies for Freedom” website, and one of Autism Speaks officials was willing to participate in a public written interview, and publicly admitted the organization had made miss-steps in the past and apologized for offenses taken. That apology is still openly discussed on several websites, and still available on the “Aspies for Freedom” and “Wrong Planet” website.

        Before Wakefield’s research was invalidated as fraud there was a wider valid area of concern for research per GI problems and vaccines. When conclusive evidence was provided that there was no link, Autism Speaks followed along with the rest of science as publicly validating the science as well as the benefits of vaccines outweighing the risks. Their continued research is defensible, whether or not one feels it deserves funding for research.

        Those that disagreed with that decision left on their own accord, but they were not shut out of the process. My point there was more directed at actual people on the spectrum, as Autism Speaks will accept respectful constructive criticism on their websites by people on the spectrum. There is a public record of it and not all the comments are reasonably respectful.

        ASAN has been noted by individuals on the spectrum as not responding to respectful constructive criticism by direct email or ASAN facebook page interaction. It’s not likely one will find any comment of respectful constructive criticism against ASAN on that facebook page, as they are reported deleted without any response. And there is no place to make a comment of constructive criticism on ASAN’s main organizational webpage. There is a public record of this concern as well, by people on the spectrum, but not by the people that identify themselves as being part of the organization. I give Mr. Carley credit for that as at least he provides an individual the opportunity to disagree with him on his organization’s website, whether or not he makes them continue to feel welcome there if they do not agree with the organization’s viewpoints.

        I don’t agree with the underlying concerns some have expressed with ASAN attempting to distance themselves from some people on the spectrum, and have seen no explicit evidence of it; those concerns have been voiced by some on the spectrum that feel they only cater to the support needs of college students on the spectrum per job opportunities they have announced in the past. I am glad to see them provide whatever support they can in that area, through collaboration with private companies, even if the qualification requirements are specific to college students. If the criticisms when voiced were answered by those representing the organization, it’s not likely the concerns would continue as strongly. I can only personally guess they do what they can, and I personally give them credit for what they do, that is good.

        I have been involved in hundreds of conversations with many different self-advocates in the last couple of years and have found a few that will openly disagree with a statement like the one I quoted from Carly, but it is not a usual event that self advocates from the same organization will call out someone when they cross a line of offense like that. They are usually ignored if presented. There is a public record of that, where those voices are allowed.

        The Autism Rights Watch Organization is the first self advocacy organization that I have seen to call out the continued infighting of ASAN with Autism Speaks as “deplorable”. That is a recent event that one can find a record of on the Autism Rights Watch Organization facebook page, in response to ASAN’s most recent protest against Autism Speaks walk event in Washington D.C.

        This is an area that I agree with the Autism Rights Watch organization, as they are a self-advocacy organization comprised of people on the spectrum that are willing to work with other autism organizations, including Autism Speaks, for the greater good of people on the spectrum. Autism Speaks has made miss-steps in the past, admitted that, and apologized for offenses taken, publicly, in online autism communities, but there is nothing of substance documented in the present to warrant these continued protests against Autism Speaks volunteer walks.

        Civil disagreement is reasonable, like Mr. Ne’eman’s constructive criticism of the amount of funding provided in the past for adult research in the hearing; but protests against volunteer walks, not reasonable by any stretch of the evidence that exists, as Autism Speaks is allied with many of the same valid concerns that Ne’eman expressed in the hearing, as much as or more than some other national autism organizations.

        I agree that Mr. Wright’s oral testimony was more critical toward the government’s response, so far, to what he termed as a public health and services crisis, than his written testimony. But, I am not sure what the strawman argument you are referring to is, other than the argument of whether or not there is an epidemic, as that is his opinion that was not defined by either of the government panelists, and would not likely be supported by them. I personally don’t agree with him using that term, unless the CDC is in accordance with it, as the causal factors for the prevalence increase have not been fully determined.

      • Sullivan (Matt Carey) December 7, 2012 at 07:25 #

        Its worth noting: Wakefield’s research results were found to be incorrect independent of his unethical practices.

      • Sullivan (Matt Carey) December 7, 2012 at 07:28 #

        It appears people left of their own accord because they were shut out of the process. Being told to vote for something one knows to be wrong is being asked to allow one’s self to be shut out of the process.

      • Sullivan (Matt Carey) December 7, 2012 at 07:30 #

        Where can one make a comment, critical or otherwise on the Autism Speaks webpage, or almost any orgs main webpage? You are making a lot of straw men

      • Sullivan (Matt Carey) December 7, 2012 at 07:46 #

        There are some good people at autism speaks, and they have morphed over the years. Have they morphed enough? No. Are they a big presence? Yes. Will they stay a big presence? Most likely, but I can think of a few scenarios where they might crash and burn.

        The bottom line is they have come far but have far to go, and I don’t see accepting a job half done. Autism Speaks would not have changed without outside pressure.

        If you are content with them, fine. I’m not. I haven’t given up on them though. There are other orgs where I have given up. Sadly.

  11. Kate December 7, 2012 at 11:04 #

    Most every professional organization has some avenue for constructive criticism or questions, whether Email, a comments section, or a facebook page. I’m not sure if you have visited the autism speaks main website but there are several avenues there were people can respond to Autism Speaks blogs or by email with respectful constructive criticism or questions.

    I have personally attempted to contact the ASAN organization several times with questions and constructive criticism, that I still have a record of. Eventually I was contacted by email by a board member, who spoke off the record as not representing ASAN, identifying that the organization did not have the personnel to respond to questions or constructive criticism by email and told me to quit “badgering” the organization with questions, that they later apologized for as we came to some agreement that a method of input by email to the organization and response at some point in the future would be desirable and reasonable, although they had no control over that potential decision in the future. I still have a record of that email, from that well known board member.

    I also attempted questions on their facebook page presented very respectfully, received no responses, and eventually after several attempts at different times for a response, in the same respectful manner, all my comments were deleted, and I was banned from making any more attempts at questions with no reason given for being banned. I am not the only one on the spectrum reporting this type of experience or concern. Perhaps they will answer questions if someone pays the $35 membership fee, but if there is no general avenue of input and response for civil discussion, including potential issues of disagreement with people on the spectrum, there is no potential for ASAN to speak for some people on the spectrum with their advocacy efforts.

    I’m not suggesting that autism speaks is a perfect advocacy organization or that there is no room for improvement, but at least people on the spectrum can ask them questions of salient concern, and get those questions answered for free; that is a matter of public record easily found with a google search for “autism speaks interview” on either the Aspies for Freedom or Wrong Planet website. If you think I am making a strawman argument with claims that cannot be validated, I don’t mind forwarding those emails to you that evidences what I just discussed, but I would rather not bring the board member’s name from ASAN into public discussion, as they were not speaking in an official capacity for ASAN; they volunteer their efforts there and are not a paid staff member. They gained my respect with their honesty, and I trust you would not share their name if you had the desire to see the validation of my claim.

    Organization’s don’t even get the opportunity to change for success, if they don’t listen to constructive criticism from their supporters or those they indicate they attempt to support. I suppose if enough people on the spectrum voice their concerns of constructive criticism to ASAN they will also have that same advantage that Autism Speaks employs for success.

    • Sullivan (Matt Carey) December 7, 2012 at 14:34 #

      When I entered the search terms ASAN autism in to Google I was presented with their contact page as the second subcategory. Clicking on it gave a number of email addresses and a phone number. Seems very straightforward to me.

      I understand now that you have a desire to criticise ASAN in a public space. You are aware that I am not affiliated with ASAN, are you not? I don’t speak for them.

      I wish you well in your efforts,

      • Kate December 7, 2012 at 21:05 #

        That is exactly how I found their contact page, and their email address for inquiries that I thought might be an effective straightforward way to communicate with the organization, since it was labeled inquiries. I am not affiliated with any organization except for my local support organization, and don’t see that as a requirement to discuss either the perceived shortcoming or strengths of ASAN, Autism Speaks, Grasp or any other organization. I have a sense of fairness in discussing issues, and it does ASAN no good to be left out of that conversation or out bounds of discussion, per identification of the organization’s strengths or weaknesses that could use improvement.

        The board member from ASAN agreed with my assessment of the need of improvement in their public relations efforts, and agreed with one of my other constructive criticisms, that they had actually noted and brought to the attention of the staff in the past that the staff was unwilling to accommodate, documented in the email.

    • Lara Lohne December 7, 2012 at 20:07 #

      Kate, the information you provided is only your particular situation, and since we don’t know the full details of that interaction, or interactions from the sound of it, we cannot, and it would be irresponsible of us to, assume ASAN is as bad as you are attempting to lead us to believe just because of your interactions with them.

      A few key things that bring your argument into speculation regarding your claims, that a board member contacted you off the record and asked you to stop badgering them, leads one to believe you had been sending them several emails over an extended period of time and probably about the same topic and they just did not have the capacity to address it and you took their lack of response as them ignoring you (but you were informed that they don’t have the personnel or means to answer each and every email that gets sent to them). You were then apologized to by the organization for the tone, I suspect, in which the board member who did contact you gave their reply.

      As far as your comments/question posted to their facebook page that went unresponded to and eventually were deleted, perhaps they were not as respectful, nor as constructive as you would like to believe, or have us believe. Perhaps, to them, you came across as cranky, bitter, angry and appeared to be harassing them. In a situation like that, they are well within their right to ban anyone that behaves, or appears to behave in that manner. There are two sides to every story and all we are getting is your side and you clearly have a vendetta against ASAN. I have contacted ASAN in the past, the local chapter to ask if I could bring my son to some of their get-togethers, letting them know I don’t have an ASD but my son does. They responded and told me they don’t have meetups for children and family members, they are for adult self advocates only. But they also suggested some places that might be able to offer me what I was looking for. While their tone might have come across as slightly rude to an individual unversed in the idiosyncrasies of ASD, to me they were simply straight forward and honest, as an individual with ASD is. Not rude, just to the point. So you see, perspective plays a huge role in that. The person who responded to your emails and comments was an adult with ASD. Any response you received from Autism Speaks was from a neurotypical individual. The wording and ‘tone’ will be different, simply because for ASD individuals, it’s about getting to the point, not creating warm fuzzies to make you feel good.

      Please try to keep in mind that your criticism may have been discussed by the board and deemed not a feasible option for the organization to pursue. That doesn’t mean they don’t listen and take into consideration comments, criticism and recommendations that they can make allowance for, it simply means they weighed yours and they were deemed not something they could do. And if you continued to contact them about the same issue multiple times after that, they would have considered that badgering. Since they don’t have staff in place to respond to every email, you need to take that into considering before you condemn them for ignoring you. Obviously since you did get a response and were told why they didn’t respond sooner, they weren’t ignoring you, they just had no way to officially respond.

      That is what I get from your information. It is purely anecdotal and doesn’t by any means give a sample of the interaction everyone has with ASAN when they contact them. Even saying you know others who have said the same thing, you most likely don’t know every autistic in the country, so you and the few that you do know, are most likely not even the majority and possibly the only reason you know these individuals is due to your mutual dislike of ASAN. I am not trying to be disrespectful to you, but you continue to go on and on criticizing ASAN and praising Autism Speaks and not everyone is going to share your opinion and your own experiences are your own experiences and we cannot take them at face value, particularly if we have had different experiences between the two organizations ourselves.

      • Kate December 7, 2012 at 22:39 #

        I was discussing areas that needed improvement, of which the board member agreed with me on several points. It’s not my goal to make ASAN look bad, it is my goal to see improvement within the organization. I would like to see all organizations improve, but I wouldn’t describe that as a vendetta. I’ve praised the good things ASAN has done in my conversation here, and also identified the miss-steps of autism speaks.

        I do see some of the anti-vax websites as potentially dangerous to those might be convinced not to vaccinate their children for valid reasons, but the danger there is for those that are not vaccinated, as the US has retained herd immunity consistently in the last two decades, while other countries have lost it and are the main source of potential communicable disease for those not vaccinated in this country. People in the US, did not take these anti-vax concerns nearly as seriously as they did in some countries in Europe where herd immunity was lost.

        I made the board member’s justification for the short falling of limited staff clear, in the inability to answer inquiries by email, as well as the apology of the board member for that board member’s choice of language. And also complimented the board member; I’m not sure how you are inferring that as me attempting to condemn the organization; my intention was a discussion of needed improvement, part of my point in discussing the issue, was to see if people would perceive my constructive criticism of discussing needed improvement in ASAN, outside of the parameter of the accepted cultural norm here in this particular internet environment. I provided further details, and an offer of validation of my claims because it was identified as a strawman argument.

        So far, Carley seems to fall inside of that boundry, and ASAN seems to be a more respected organization, and perhaps out of bounds for a discussion of improvement in that organization. It’s not out of bounds on the wrongplanet website, as the improvements for ASAN are discussed almost as much as improvements for Autism Speaks. Grasp is nowhere on the radar. And overall people have lost interest discussing either organization. The hearing was not even a hot topic of conversation there.

        The ASAN facebook experience could be the result of poor moderation for all I know, but it still is not acceptable for a professional organization, that should be identified and improved. One might expect moderation accommodating people on the spectrum like what one finds on the wrongplanet website. It is very true that some people on the spectrum can come across harsher than intended, and this is the group that ASAN suggests that they are here to listen to, so it is a good place to have a moderator that keeps this potential in mind, and provides an accommodation for it.

        My intention is to never to communicate in disrespectful terms towards others, in a personal manner, provide a fair analysis of pros and cons, and thoughtfully review my communication to insure I meet that standard. I have been recruited as a moderator in autism communities where diverse opinions are accepted, in acknowledgement of my effort in that area, that I also have a record of. The ASAN board member agreed that my inquiries were presented in a respectful manner, and I do still have a record of them, as indicated in my last post.

        I’ve made it clear that I support and like the good things that ASAN does. If I didn’t sincerely think that my constructive criticisms could potentially enhance the organization I would have not taken the time and effort to pursue them.

        Since the time of my conversation with the board member, action was taken on one of my constructive criticisms, that the board member was previously unable to convince the staff members to change on their own, and I hope at this point they have increased their customer relations staffing at their main office, through email inquiries, as the board member agreed that was a needed area of improvement. One of my suggestions at the time was to clarify on the website that the organization was not currently staffed to answer inquiries, so people would not waste their time and efforts in asking questions, or at least not gain a perception that their questions did not matter to the organization. I don’t see that as unreasonable, and neither did the board member.

  12. Art DeBolt December 31, 2012 at 01:27 #

    There is hope. Dr. Michael J. Goldberg a pediatrician in Tarzana CA has discovered that approximately 90% of the “austistic’ children he sees, test positive for the herpes-6 virus. This virus attacks the brain. He is successfully treating these children, including my 5yr old grandson Eli with anti-viral medications. The following is part of an update to my daughter from Eli’s teacher who started with Eli prior to the anti-viral meds:

    Amy and Josh,
    As a teacher, today was one of those days you dream about in theory, but are not sure it will really happen. I was so emotional by the time Eli’s day ended. I have been teaching for 30 years and have never witnessed anything like today! Amy, as I spoke with you on the phone last night, I was so excited. It was hard to believe then, that today could have topped yesterday. I am starting to realize that there are no limits to what the day will bring! As I mentioned, now that Eli is starting to interact appropriately with his peers, the reinforcement and encouragement from the children adds another positive dimension.

    For more information about this virus and treatment go to NIDS.net.

    Nothing to buy, no therapies, just a medical doctor treating patients who have an illness that manifests itself with autistic like behaviors and mannerisms.

    • Lawrence December 31, 2012 at 02:42 #

      @Art – how exactly are these children contracting the Herpes virus?

      • Arthur DeBolt December 31, 2012 at 02:56 #

        The Dr does not know exactly how the virus is entering the brain. Leave that to a researcher. Dr Goldberg treats the cause of the autistic behaviors by killing off the virus with anti viral medications. The result is a child that can speak, smiles, engages his peers and is ready to learn. Go to http://www.nids.net and check it out.

        Sent from my iPhone

    • Sullivan (Matt Carey) December 31, 2012 at 04:45 #

      What does this have to do with the article above? Looks like nothing to me.

      What fraction of the general population tests positive for hhv6? Close to 100%.

      “Nothing to buy” except the services of a physician whose efforts may not be covered by insurance, tests and drugs. Plus the real but non economic costs of time and possible adverse reactions for the autistic. NIDS is largely a package of the usual alt-med approaches (gfcf plus other diet restrictions), yeast, etc.. He adds SSRI’s which many alt-med types shun.

      There was a commenter here years back who had been heavily into NIDS. Said commenter is a major critic now.

  13. lilady December 31, 2012 at 04:54 #

    Did your grandson’s doctor explain to you that primary infection with HHV – 6 occurs in early childhood (~ 90 % of children will have “evidence” of infection with the HHV – 6 virus) and that the virus remains dormant in the body.

    “The Dr does not know exactly how the virus is entering the brain. Leave that to a researcher. Dr Goldberg treats the cause of the autistic behaviors by killing off the virus with anti viral medications.”

    Antiviral medicines are used to decrease the viral load, if the virus is reactivated…usually only seen in immunocompromised patients and in patients who are undergoing immunosuppressing treatment following organ transplants. There is NO CURE for HHV-6 virus or any other type of Human Herpes Virus infections.

    Here’s the “research” you made reference to:

    http://pathmicro.med.sc.edu/virol/herpes.htm

    Dr. Goldberg is *experimenting* on your grandson and prescribing powerful and not-medically-indicated antiviral medication.

    @ Lawrence: Check out whale.to for Dr. Goldberg and Herpes-6 autism. :-)

    • Arthur DeBolt December 31, 2012 at 05:55 #

      I did not nor did the Dr say the anti-viral meds will “cure” the hhv6 virus. It does “kill off” supress or in your words reduce the viral load sufficient to allow the elimination/supression/ of the “autistic” behaviors and mannerisms that has prevented my grandson from speaking, engaging other children and participating in typical 5 yr old behaviors. Valtrex a powerful antiviral med?? Hardly. Not medically indicated??? The results contradict that statement… visable to all who know my grandson, including teachers, speech therapists, who refer his change in 60 days as “a miracle” and “not the same child. Experimenting? How so? A blood test indicates the presence of a virus whose host is the brain. The child presents with autistic like symptoms. An anitviral med is perscribed by the physician and the majority of the symptoms dissappear within 60 days. The child is bright eyed, smiling, engaging and compliant. No tantrums, no head banging, sleeping through the night. The cost of this “experiment” an office visit and a perscription med. Sure beats the $50K his insurance company has spent on two years of ABA therapy (30hrs a week) with no meaningfull results. My grandson is only one of Dr. Goldberg’s patients who are experiencing real results. Say what you want, I finally have a grandson that runs to me, gives me a hug and says hi papa. What therapy do you recommend?? Date: Mon, 31 Dec 2012 04:54:30 +0000 To: artdebolt@msn.com

      • Sullivan (Matt Carey) December 31, 2012 at 06:21 #

        I note you didn’t address the fact that the virus is in almost everyone, making the test useless. Except as a marketing ploy.

        If the host is the brain, why does the virus show up in a blood test?

        I wish your grandchild well. I can be happy for his progress and not accept that NIDS has a sound basis at the same time. I can also expect that a biological plausibility be established before considering a treatment. I apologize in advance, but internet anecdotes are common and have often failed under scrutiny.

        ” The child is bright eyed, smiling, engaging and compliant.”

        As are a great deal of autistics. Compliant is another discussion, though. The point for this discussion is that I prefer people not promote inaccurate pictures of autism.

      • Lara Lohne December 31, 2012 at 06:47 #

        My oldest born has HHP6, she had several roseola rashes as a small child. She is the only one of my children who ever had such rashes (although I’m sure all the others have been exposed to it since most people have been), but she’s not the one who has autism so not sure your doctor’s theories are correct just from my own anecdotal experiences. And my child who is autistic has always been bright, smiling and affectionate. Generally, my son remains that way all the time unless he is feeling overload, then he will retreat to his chair, sometimes to his bedroom, and stim for a little while. After he has regulated himself, he’s back to his happy, smiling self again. Is it the stimming that is bothering you? Everyone stims, it’s just more obvious in autistics. Haven’t you ever found yourself bouncing your leg without realizing it, or tapping your fingers or doing some other little meaningless activity that you didn’t realize you were doing until you noticed it and then realized you had been doing it for a while? That’s stimming. Regardless, given the data on HHV 6 and how prominent it is in the population, and that roughly 1% of the population falls on the spectrum, it can’t be plausible that HHV 6 is causing autism, especially when one considers all the genetic research that has been done.

  14. lilady December 31, 2012 at 06:59 #

    Mr DeBolt: Out of respect for Mr. Carey, I will not engage you any further, except to provide you with the Treatment Guidelines for a patient who has HHV-6 “in the brain”.

    http://cid.oxfordjournals.org/content/47/3/303.full

    You should be very glad that your grandson does not have HHV-6 encephalitis…it is a devastating viral infection.

    -lilady, RN, BSc-Nursing, Public Health Nurse/Clinician-Epidemiologist (Retired)

    • Arthur DeBolt December 31, 2012 at 14:40 #

      I am not sure what you mean when you say ‘out of respect’ for Mr. Carey. I don’t believe there is any disrespect conveyed or intended in my comments and certainly none taken by your or Mr. Carey’s comments. I am not in the medical or scientific field, I am a businessman. I am not the type of person that will repeat or continue a process that does not provide the intended result. Mr. Cary says the blood test was a marketing ploy. A ploy to sell what? A $300 office visit? I attended the first appointment make sure this Dr was not selling, “snake oil” or some other gimick to my vulnerable daughter and husband seeking help for their son. What I found was a caring practicing pediatric physician who sees autistic children on Thursdays apart from his regular practice. He obviously has a theory/belief that there is a medical component to this malady. He treats that theoretical medical component with a perscription medication and wonder of wonders the autistic behaviors cease. If my grandson’s and the other children’s improvements are anecdotal at what number does anecdotal cease and the treatment become accepted? This begs the question are these children truly autistic or are they ill with a condition that does not allow their immune systems to fight off a virus that manifests itself with autistic like behaviors and mannerisms? As a businessman my question to the medical community is, “Where is your curiosity?” You have a “lone” physician who has developed a medically based protocol that works on these childen labeled “autistic”. You nor Mr. Carey did not answer my question, “What therapy do you recommend?” BTW. I am glad my grandson does not have HHV-6 encephalitis, nor polio, aids and especially autism! Date: Mon, 31 Dec 2012 06:59:30 +0000 To: artdebolt@msn.com

      • Lara Lohne December 31, 2012 at 17:33 #

        Your Dr. Goldberg is no different from all the other doctors who treat autistic children with chelation or MMS enemas. Those are people who also believe autism has a medical component, yet there is no data showing that those beliefs are founded in fact or scientifically based observations. This is not treatment, it is experimentation plain and simple. And honestly, you sound just like those parents screaming on the internet that, “Vaccines injured my child and now he/she has autism!” Why is it so hard for people like you to get that autism is not a medical condition, it is neurological and is so because the brain is constructed and wired differently and that is based on genetics, not a virus.

        Normal, typical progress of an autistic child, without intervention, will eventually result in the child lessening their ‘autistic behaviors’ (whatever that is referring to, I still don’t know) as they learn to self regulate. That is a normal part of the progression. See, here’s the thing, in the real, true, scientific community, research is done first to determine plausibility of a hypothesis, if that hypothesis shows plausibility, then additional testing is done to see if it is replicatable in multiple study subjects, and if that is true the hypothesis becomes a theory, and then additional study is done to find out how universal it is and that can go on for several years. Once that is done, the data is analyzed and a conclusion is drawn. If the conclusion is obvious improvement for the greater majority of the study group, then it is put up for additional screening for safety and whatnot. In order for a procedure to become a standard medical practice, particularly one involving pharmaceuticals, the process of researching to determine if it’s safe, effective and a worthwhile treatment is lengthy and done before it is approved for use. Your doctor is just acting like Doctor Frankenstein, nothing more then that.

        And for the record, it saddens me that yet another parent/grand parent of an autistic child cannot accept that child for who they are and instead must try to ‘fix’ him. And the fact you stated having autism was ‘especially’ bad, compared to polio, encephalitis and aids is most telling also. Think about the language you use regarding that child, he will understand it, even if you don’t think him capable of it. Your priorities are clearly skewed and you are clearly pedaling for this doctor. Do you honestly think a conman, particularly one who preys on families of autistic children is going to be anything but caring, concerned and friendly? Honestly you are naive if you believe that, because conmen, are very charismatic, otherwise they couldn’t be conmen. Please take this nonsense somewhere else, particularly since it isn’t even relevant to the topic of this post.

      • Chris December 31, 2012 at 17:34 #

        It looks like you are spamming.

        Come back after Dr. Goldberg has done some well designed studies that conform to ethical rules in regards to human subjects and has published the results. You might want to help him write the grant to get funding.

  15. Science Mom December 31, 2012 at 15:14 #

    Mr. DeBolt, if Dr. Goldberg’s “treatment” is so effective then why hasn’t he published his observations? Shouldn’t a good doctor rely upon research as a guide rather than experimenting on their own? Charlatans rely upon testimonials and gullible people like you to spread the word. Giving a child anti-viral medications when not warranted is abuse. I have no doubt that the teachers observations, if even real can be rationally explained otherwise.

    • Lawrence December 31, 2012 at 15:26 #

      Exactly – if he’s not a researcher or working on a grant / recognized clinical study, then he’s conducting experiments on children without proper supervision.

    • Lawrence December 31, 2012 at 16:14 #

      @Science Mom – a quick check of PubMed doesn’t show anything on NDIS or anything else published by Dr. Goldberg.

      I also found nothing noted in the Clinical Trials database either – so what we have here is someone who has come up with a “novel” treatment without any peer-reviewed trials – true unsupervised experimentation if I ever saw it.

  16. lilady December 31, 2012 at 17:43 #

    Let’s go back over Mr. DeBolt’s statements…

    “The Dr does not know exactly how the virus is entering the brain. Leave that to a researcher. Dr Goldberg treats the cause of the autistic behaviors by killing off the virus with anti viral medications.”

    - If the “virus is entering the brain”, then the child has HHV-6 encephalitis.

    http://www.webmd.com/a-to-z-guides/understanding-encephalitis-basics

    - Dr. Goldberg is treating autistic behaviors “by killing off the virus with anti-viral medications”.

    I provided Mr. Debolt with links to two articles, about the prevalence of infection with the HHV-6 virus, information about the dormancy of the virus (and other human herpes infections) and the reactivation of the HHV-6 virus. The second link I provided to Mr. Debolt was the Treatment Guidelines from the IDSA for Herpes that “enters the brain” (herpes encephalitis).

    Mr. DeBolt has persisted now with his thread-derailing posts, in spite of Matt Carey’s comment to stay on topic, and in spite of my comment to respect Mr. Carey’s request to not pursue a debate with Mr. DeBolt.

    Mr. DeBolt has made some other statements about Valtrex oral antiviral medication being prescribed to his grandson for HHV-6 treatment (or for ‘killing off the virus’).

    “Valtrex a powerful antiviral med?? Hardly. Not medically indicated???”

    And this one directed at me…

    “What therapy do you recommend?”

    Valtrex is a powerful antiviral medication and it is not-medically-indicated for primary HHV-6 infection, or to decrease the viral load of the virus and certainly NOT for “killing off the virus”. From the current Physician’s Prescribing Sheet provided by manufacturer of Valtrex, the ONLY indications for prescribing Valtrex for pediatric patients:

    http://us.gsk.com/products/assets/us_valtrex.pdf

    “Pediatric Patients

    Cold Sores (Herpes Labialis): VALTREX is indicated for the treatment of cold sores
    (herpes labialis) in pediatric patients aged greater than or equal to 12 years. The efficacy of VALTREX initiated after the development of clinical signs of a cold sore (e.g., papule, vesicle, or ulcer) has not been established.

    Chickenpox: VALTREX is indicated for the treatment of chickenpox in
    immunocompetent pediatric patients aged 2 to less than 18 years. Based on efficacy data from clinical studies with oral acyclovir, treatment with VALTREX should be initiated within 24 hours after the onset of rash [see Clinical Studies (14.4)].”

    The *treatment* that Mr. DeBolt’s grandson is undergoing isn’t even “experimental”…it is a form of child abuse when credulous parents allow a quack to medicate a child with powerful not-medically-indicated anti-viral medications, to *treat/recover/cure* an autistic child.

    • Lawrence December 31, 2012 at 18:26 #

      @lilady – I believe I was attempting to stress that Mr. Debolt is advocating for experimentation on children, without any regulatory supervision…….which is exactly the case & should be reported to the proper authorities.

      • lilady January 1, 2013 at 18:08 #

        @ Lawrence: I concurred with Matt Carey’s wish to not permit Mr. DeBolt to derail this blog, but when DeBolt came back with more “information” about the actual *treatment* provided to his autistic grandchild, I felt that he needed more accurate information.

        Yes, you and other posters stated succinctly that the child is being subjected to experimentation. I believe that we all have provided him with ample information about this quackery and I only hope that he shares this information with the child’s parents.

      • Arthur DeBolt January 1, 2013 at 20:29 #

        Quackery? Are these doctors quacks as well? “Dr. Goldberg has spent the last thirty years developing the evidence to suppot a biologic or neuroinflammatory model to explain autism. Now mainstream science is catching up, and sophisicated research tools support this model”. Nancy Kimas, MD Professor of Medicine, Microbiology and Immunology; University of Miami Miller School of Medicine “Dr. Goldberg suspected from very early that autism was the consequence of an inflammatory process and thus amenable for treatment. Over the years, the epidemic increase of the prevalence of this dreadful condition has strengthened this hypothesis”.Ismael Mena, MD Emeritus Professor Radiological Sciences UCLA School of Medicine “Dr. Goldberg’s knowledge basei s greater than anyone else’s in this treatment area. He is the best expert in this field, in my opinion. I could have taken my son to any autism doctor in the world and I chose Dr. Goldberg”. Bruce L Russell MD, FAAFP You can view Dr. Goldberg’s testimony before a congressional committee at the following link:

        http://www.neuroimmunedr.com/What_s_New/Committee_Testimony/committee_testimony.html or Read his book, The Myth of Autism or go to this web site http://www.nids.net

        There is nothing worse than a closed mind. Date: Tue, 1 Jan 2013 18:08:12 +0000 To: artdebolt@msn.com

      • Sullivan (Matt Carey) January 1, 2013 at 22:58 #

        All,

        I pointed out that this has nothing to do with the discussion at hand as a flag that this is basically spam ( or spam by proxy). Don’t feel constrained in responding.

      • Lara Lohne January 2, 2013 at 02:48 #

        Personally, anyone who refers to autism as “this dreadful condition” is a quack in my book, because if they knew anything about autism, using such language would not be something they would do. Credible doctors know that autism in and of itself really is not the issue, anyone who tries to say otherwise is selling something.

      • Sullivan (Matt Carey) January 1, 2013 at 23:56 #

        “Dr. Goldberg has spent the last thirty years developing the evidence to suppot a biologic or neuroinflammatory model to explain autism. Now mainstream science is catching up, and sophisicated research tools support this model”.

        First, this is a quote from his website, correct? Basically a sales pitch.

        Take a look at his congressional testimony. Does he mention neuroinflammation in it? No. He started talking about yhst after 2005 when the research on neuroinflammation first came out. It is easy to claim now that his work has been involved in neuroimflammation.

        He’s been “developing evidence”? When doe he plan to share it?

        The fact that he was invited by Dan Burton to testify before a congressional committee does not impress me. Quite the opposite. Burton collected pretty much everyone he could find who would claim vaccines cause autism. You won’t find inflammation mentioned once in Dr. Goldman’s testimony. You will find vaccines mentioned repeatedly.

      • Arthur DeBolt January 2, 2013 at 00:58 #

        I find it interesting that Mr. Carey will not answer my simple questions. Are the physicians quoted quacks as well? I wil answer his: First: The quote is not from the website. Why are you afraid to view it? Closed mind again? Second: Sales pitch. Selling what. an office visit and a perscription that is filled a pharmacy. What are you selling Matt? Third: Congressional Testimony. If neuro inflamation wasn’t discovered until 2005 and his testimony is in 2000 why would you expect to find it. If he has been developing evidence (ie sucess in his protocol) for 30 years does that not include advances in research that have occurred with that 30 year period that he may incorporate today in his model? Fourth: Developing evidence, when will he share it? He has on http://www.nids.net the site you are afraid to visit and his book ‘The Myth of Autism” which I am sure you either lack the curiosity, the funds or the library card to read it. Every thing is explained. Fifth: Burton: your not impressed. So what! I didn’t direct you to burton. Another red herring by you. Sixth: Vacinnes. You did not read the article. If you had you would have seen two paragraphs that mentioned vaccine.Here is what Dr. G said: “The issue of vaccines is an important one. Again, one must understand the problem in terms of the new altered immune state (part of the bigger picture), rather than necessarily the vaccines themselves. Most doctors would agree that not vaccinating in this country would be a disaster…” “… Likewise, in discussing the current Autistic / NIDS epidemic, while there may be a possible “triggering” factor with Rubella, Measles, “multiple” vaccines, one must understand this as only one of a possible combination of stresses causing dysfunction, within the concept of a preexisting “immune reactive or “stressed” state. Vaccines (by themselves) remain an unlikely cause of Autism. ” What is truly sad Matt is that you cannot even conduct an honest discussion. You have to resort to distorting the facts trusting that the sheep that follow you will not do their own independent reading. I hope none of you reading this and believing Matt have childen labeled autistic. A physician friend of my daughter took his 11 year old daughter to see Dr. Goldberg on Dec. 27 . I asked what was his opinion as a physician. He said, “we had a two hour appointment and a bill for $350, he is not doing this for the money”. About his treatment protocol. “In the future they will say he is 50 years ahead of his time”. Date: Tue, 1 Jan 2013 23:56:08 +0000 To: artdebolt@msn.com

      • Sullivan (Matt Carey) January 2, 2013 at 01:43 #

        Why didn’t I answer your question? Perhaps because it wasn’t addressed to me, as I have not referred to Dr. Goldman as a quack. Seems simple enough.

        I apologize for mixing up his website (which I have read) with reviews for his book. Reviews by the board members of his organization. It is still a sales pitch by people who are not independent of the good doctor.

        I’m afraid to look at his site? That’s simple troll bait. Don’t claim some sort of moral high ground if you resort to such baiting.

        ” If neuro inflamation wasn’t discovered until 2005 and his testimony is in 2000 why would you expect to find it.”

        Because he claims he was working on it then. You see, he wasn’t working on neuroinflammation the or now. Saying so now makes him look visionary.

        I read the testimony (it isn’t an article, it is a transcript of his testimony). Again, you are baiting. It mentions vaccines 12 times. Congressman Burton was gathering people who would implicate vaccines in any way, directly or indirectly. Dr. Goldman stands in the company of Andrew Wakefield as a witness for those hearings. You are the one who put out congressional testimony as something that would lend credibility to Dr. Goldman. I’m just letting you know that doesn’t work.

        I certainly hope that in 50 years we are far beyond the sorts of random guesses that are behind Goldman’s approach.

        As you have demonstrated with your links to the testimony, NIDS has been around for a long time. You aren’t the first to promote it for the doctor. You won’t be the last. Just because your persona acts as though it is new, don’t act like the rest of us have never heard of it.

  17. lilady January 2, 2013 at 00:24 #

    Sorry Matt Carey…

    Mr. DeBolt who is actually spamming this comments with his anecdotal stories, has not replied to my links about HHV-6 and HHV-6 “in the brain” (encephalitis), and to the link I provided him from the manufacturer of the anti-viral drug “Valtrex”.

    His grandson does not have HHV-1 or Herpes Zoster (Chicken Pox), which are the ONLY herpes viruses that respond to treatment with oral “Valtrex”.

    At this point, I can only conclude that he is shilling for Dr. Goldberg.

    • Arthur DeBolt January 2, 2013 at 01:38 #

      Sorry I haven’t replied to you sooner. Regarding your comment about HHV-6 etc . I would refer you to Dr. Goldbergs book “The Myth of Autism” for his explanation of that particular virus and its role. I am not in the medical field and not qualified to answer your question. Why are you “sorry” for Matt Carey. He seems to be a big boy and certainly he can handle himself in a discussion with a businessman sharing information about a success that all should be excited about. As for spamming. I’m not that tech savy to do it. I am “spreading the word” about Dr. Goldberg’s successful treatment of my grandson that provides real results and hope for a productive life in an otherwise hopeless situation. As to being a shill that conotes a financial interest in the person being ‘shilled’ for. I have no financial interest in Dr. Goldberg, his practice etc. My grandson started the protocol http://www.nids.net (if you dare view it) and in 60 days his change is nothing short of a miracle. On the other hand I do have a question for you. Statistically at what number (percentage) of sucessful outcomes does a process cease to be considered anecdotal and become predictable? Date: Wed, 2 Jan 2013 00:24:37 +0000 To: artdebolt@msn.com

      • Sullivan (Matt Carey) January 2, 2013 at 02:24 #

        Mr. Debolt,

        You misunderstand the argument. It isn’t the number of anecdotes it is the fact that they are anecdotes. There were many anecdotes about trans-dermal chelation years back. Miraculous improvements. Funny thing, the chelator isn’t absorbed transdermally. Just an example.

        How about a case study? One patient, whose amazing progress has been reported with the theory presented for peer review? That would be a start. A small start.

      • Arthur DeBolt January 2, 2013 at 02:34 #

        Thank you for your answer and your advice. I will ask the doctor about a case study and peer review

        Sent from my iPhone

    • Sullivan (Matt Carey) January 2, 2013 at 01:44 #

      Agreed.

  18. lilady January 2, 2013 at 05:21 #

    Mr. DeBolt you admit you are not qualified to comment on Goldman Protocol (TM)…yet you continually tout his *treatment/recovery/cure* of autism.

    You’ve been provided with ample links to information about the HHV-6 virus, the HHV-6 virus when it “enters the brain” (encephalitis), The Treatment Guidelines from the IDSA for HHV-6 encephalitis and the Physician’s prescribing information for Valtrex.

    You are unable to dispute any of the information I have provided and just keep touting Dr. Goldman’s book.

    I am “sorry for Matt Carey” because you keep posting your nonsense which is not based in science and not based in research, in an effort to derail this post. You have finally admitted that you are NOT qualified in any way to discuss Dr. Goldman’s treatments. (“I am not in the medical field and not qualified to answer your question.”)

    Mr DeBolt, I AM in the medical field and qualified to comment about HHV-6, HHV-6 encephalitis and prescribed anti-viral medication to treat HHV-6 encephalitis. I am also the parent of a developmentally disabled child, since deceased, who was born with a rare genetic disorder who had pronounced autistic-like behaviors.

    Unless you can refute all the links I provided to you, I consider you a person who has no qualifications and is spouting anecdotal testimonials.

    • Arthur DeBolt January 2, 2013 at 15:14 #

      What I find troubling about my responses to my initial post, which by the way has everything to do with the high costs related to autism ($50k US per year spent by my daughter on ABA, Speech and occupational therapies and no others) is the closed minded unwillingness to even consider there may be a medical component to what is called autism. There is a saying “When you cannot figure out what is going on, follow the money”. My grandsons ABA therapist who has not seen him in the 60 days he has been on the meds could not believe it was the same child. She said, “I’m going to be out of a job”. I said no your therapy is now going to be in the context that he can learn not be trained. The head of Special Education for the school district commented after learning of my grandson’s improvement, “This will never fly in the school district, it will affect too many jobs.” There is obviously too much money in preserving the status quo and protecting the golden fleece of autism. Regarding Mr. Carey I did a little research and actually find that we have somethings in common; we are both not in the medical field, we live in the same state, we have a passion to help not only our own children but others as well and we don’t tolerate the charlatens and those that would prey on the vulnerable parents of our children. Our differences; I do not believe any one person or group has a lock on good ideas, I tend to look at the glass as half full not half empty. All I know is what I see and that is my grandson in his first 60 days on an anti-viral med and a slight modification in his diet, is a happy, smiling, talking, singing and engaging little boy. In the scientific world you dismiss it as ‘anecdotal’ and yet offer no equivelent alternative. Dr. Goldberg is a practicing pediatrician who treats his patients for what he has found to be an illness that manifests itself with autistic like behaviors and mannerisms. He is not a researcher, he is a physician. Date: Wed, 2 Jan 2013 05:21:29 +0000 To: artdebolt@msn.com

      • Lara Lohne January 2, 2013 at 18:45 #

        One thing that strikes me as curious, is why you automatically assume any and all progress is due to this anti-viral treatment that according to what we know from science is highly speculative at best, and not due to your grandson’s own ability to progress? Your talking points are invalid, granted my own personal experience with my own son is anecdotal, just as yours is, but what makes yours so uncompelling to me, is similar progression happened in my son, without any major treatments or therapies or interventions, other then what he was getting at his preschool twice per week for two hours per day.

        We did try the therapy route, but the stress of getting to these appointments (no car makes things very difficult on a family with an autistic child) and that it was actually harming my son’s health, him being in diapers still but having full command of his bowels and bladder, while he was out of the house and wearing pants, meant that for as many as 10 hours or more each Wednesday, he was holding in everything, from the time we left the house at 7AM until we would get home in the evening, after all the therapy and the time it took to get to and from each appointment, around 5:30 or 6PM. And they changed his therapist four times in three months and each change meant he started over at square one.

        If we had been able to space things out more, or if we had been able to keep the same therapist, the therapy he was being given could have been beneficial, but we had to go at the time that our name came up on the waiting list or be left behind. In the end, it turned out to not be worth it. But I did continue to work with him at home, the sensory play and motor control muscle strengthening activities and even the play therapy we attended briefly was all incorporated into our home life. There is no doubt that this therapy had some significant benefits to my son; for example, I am able to clip his nails and cut his hair without him going into transports of terror. But the majority of the progress he has made, in his language, social functioning and executive functioning has been him, and was just something that was in him all along, and came out once he was ready and able to do so.

        The vast majority of the progress he has made has been in the past six months. He’s not had any therapy sessions since October of last year. Too many people forget, autism is developmental delay, not stasis and everyone with autism progresses, at their own pace, even without intervention or therapy. Early Intervention can help significantly, in my son’s case, I believe it allowed him to know the tools were there for him to use, should he need to, but I wasn’t expecting anything miraculous, because my son has autism, and I have accepted that and am not looking to cure him, just to make sure he’s happy and healthy and loved. I give him the support he needs and he does the rest. You are not a ‘glass is half full’ type of person, because you believe that autism needs to be cured. That in and of itself is the single most damaging attitude toward everyone in the autism community, because ‘needing a cure’ automatically means there is something wrong. Just because a person with autism is not like you, doesn’t mean they aren’t exactly what they were meant to be like, and who are you, or anyone else to say that is untrue?

        This doctor is experimenting on your grandson, and you don’t know what long term harm his ‘treatment’ might have. That is why things need to be studied before they are released for general use in the public, there is a great deal more to medical interventions, not only what you are subjecting your grandson to but every other medical intervention, then progress or benefits reported. There is also the risk of damage or injury from said intervention, some of which might not be known for years down the road. A really good example of that would be the prescription drug Fen Phen, if you recall that. It worked really well for weight loss, but at the cost of damaging people’s hearts resulting in high risk of death to cardiac arrest. I think that experience in pharmaceutical interventions has taught us, just because something is effective, doesn’t mean it is worth it, in the long run, and these medications need more vigorous safety studies before they are approved for use. So your doctor might not be a researcher, but if his treatments had an validity, why hasn’t someone volunteered to actually do a controlled trial for safety and effectiveness? Something like that would actually make pharmaceutical companies a lot of money if it worked as you claim, so why aren’t they willing to fund a study to make his treatment valid and approved? My guess is his treatment isn’t all that it’s cracked up, by you, to be. Until science shows us otherwise, I choose not to rely on your anecdotal experience, especially since my own anecdotal experience contradicts yours as far as progress in an autistic child goes. You won’t ever know if the progress was your grandson’s own doing, which 9 times out of 10 is going to be the case. You instead place all your eggs in this unproven and unethical basket and now come here touting its benefits and are for some reason offended that we don’t believe you. Perhaps it’s time you take your sales pitch elsewhere to people who are more gullible to fantastical claims, because we aren’t buying it here.

      • Chris January 2, 2013 at 18:45 #

        It still does not excuse your spamming of an unproven and possibly dangerous treatment.

      • Chris January 2, 2013 at 19:02 #

        Reply meant for Mr. DeBolt.

      • Lara Lohne January 2, 2013 at 19:08 #

        Wow, new year and completely forgetting it already. My statement that my son hasn’t been to a therapy session since October of last year, should be interpreted as October 2011. Sorry for any confusion.

      • Sullivan (Matt Carey) January 2, 2013 at 21:47 #

        The head of Special Education for the school district commented after learning of my grandson’s improvement, “This will never fly in the school district, it will affect too many jobs.” There is obviously too much money in preserving the status quo and protecting the golden fleece of autism.

        With all due respect, anyone who has dealt with a school district on special education, especially for a child with great needs, would find the above anecdote difficult to believe.

        If you present a child to a school district with great improvement, districts are pleased. Pleased and they move to cut services to you.

        Districts see autistic children who have the greatest needs as *costing* jobs. Placing such a child in a less restrictive environment is cheaper and *saves* money *and* jobs.

        Presenting autism as “the golden fleece” of school districts is a statement no one who has had first hand experience would ever say.

      • Sullivan (Matt Carey) January 2, 2013 at 21:50 #

        “Our differences; I do not believe any one person or group has a lock on good ideas, I tend to look at the glass as half full not half empty”

        Straw man arguments, both.

      • Sullivan (Matt Carey) January 2, 2013 at 22:09 #

        Mr. Debolt,

        Your comments are getting more and more into personally attacking me. That doesn’t bother me, but it does make me wonder. I wonder why someone who has no history of dicussing autism on the internet chose this site and this article, which have nothing to do with NIDS. The easiest answer is random chance brought you here and for some reason you have no interest discussing your experiences elsewhere. But we are going over the same ground over and over, with you trying to ramp up the heat to take a discussion into an argument.

        I wish you and your family well. Show disrespect for those who continue with this discussion and you will be banned.

  19. Lawrence January 2, 2013 at 15:50 #

    @Arthur DeBolt – once again, I point out that Dr. Goldberg is experimenting on children. There are reasons why we have regulations and clinical processes in place to make sure that these treatments are actually safe & effective.

    If there is such a huge improvement & it has occurred in multiple individuals, why hasn’t this been part of any published work or why aren’t there on-going clinical studies to determine if this is a real and effective treatment?

    Unfortunately, we’ve seen way to many charlatans and quacks to take anything at face value – and the fact that I can’t find anything in the medical literature (PubMed or ClinicalTrials.gov) related to this, means that no actual testing has been done.

    I would ask some very pointed questions – like why isn’t Dr. Goldberg putting this treatment to the test or getting actual researchers involved?

  20. Science Mom January 3, 2013 at 01:28 #

    Quackery? Are these doctors quacks as well? “Dr. Goldberg has spent the last thirty years developing the evidence to suppot a biologic or neuroinflammatory model to explain autism.

    A quick look at your list of “doctors” who are shilling for Goldman does scream “quack” to me. They are not independent and they have their own dodgy clinics which sell alternative snake-oil except Dr. Mena. I also wanted to ask where all of this evidence is if Goldberg has been “studying” it for the last thirty years but then you hoarked this one up:

    He has on http://www.nids.net the site you are afraid to visit and his book ‘The Myth of Autism” which I am sure you either lack the curiosity, the funds or the library card to read it. Every thing is explained.

    Um no DeBolt; it’s not all explained. That is not how science is disseminated; anyone can write a damn book but not everyone can get past the scrutiny of experts in the field. Colour me unimpressed as a scientist.

    What are you selling Matt?

    Stick it up your arse DeBolt and do some background before making such accusations.

    “… Likewise, in discussing the current Autistic / NIDS epidemic, while there may be a possible “triggering” factor with Rubella, Measles, “multiple” vaccines, one must understand this as only one of a possible combination of stresses causing dysfunction, within the concept of a preexisting “immune reactive or “stressed” state. Vaccines (by themselves) remain an unlikely cause of Autism. ”

    Spare me; we all know what this is double-speak for. Anyone who would say this is a hack and clearly incompetent.

    • Arthur DeBolt January 3, 2013 at 02:41 #

      I’ve never seen such name calling outside of an elementary school playground. Hey Matt if this continues are you going to ban them as well?

      Sent from my iPhone

      • Chris January 3, 2013 at 04:02 #

        You are promoting a therapy repeatedly without valid evidence. That by definition is “spamming.” Plus promoting the use of an anti-viral therapy and can promote resistance to the medication, both are dangerous.

      • Arthur DeBolt January 3, 2013 at 05:28 #

        Brilliant statement. Don’t use an anti viral to fight an active viral infection because you might develop a resistance to the medication when you get what? A viral infection that may be devastating? Is a viral illness that manifests itself with autistic like symptoms not worthy of treatment in your universe?

        With this post I will leave you and your closed minds with one last question. How can you have an epidemic that is genetically or behaviourly based. You can’t !

        Sent from my iPhone

      • Lara Lohne January 3, 2013 at 07:16 #

        Wasn’t there a post recently that covered the ‘genetic epidemic’ question? I don’t remember if it was here or another blog I read, but it was referring to increases in Down’s Syndrome I believe, which is clearly genetic. Further, just because autism has genetic based causes, doesn’t mean we are seeing an epidemic increase in it. The increase in prevalence is not due to more actual cases, but better awareness, better assessment and expanded diagnostic criteria. Autism has always been with us, just ask the many adults who have autism, and I’m not talking about young adults just leaving high school. I’m talking about the many adults that have just recently been diagnosed or are attempting to get evaluation to be diagnosed. For children it’s easy, not so for adults, even when the clearly display the same characteristics of their offspring. The actual cases of autism are not rising, we are just able to spot it better in the current generation. But it has always been there and in roughly the same numbers as what we see in children today.

        You have not given us any reason to believe that this viral infection thing is real. Just because you say it is, and some random doctor who believes vaccines are involved somehow says it, doesn’t mean it is true. Where is the evidence to support your claim? If you can’t provide that, then you are wasting your time here. Get the evidence, then come back. If you can’t get the evidence, then your claim is not based in scientific fact, but in whimsy and fairy tales. Autistic-like behavior is not the same as autism also. My older brother had cerebral palsy, he had autistic like behaviors but was not ever given an autism diagnosis. And there are significant differences between his behaviors and my son’s behaviors also. And I’m still curious what ‘autistic like behaviors’ you find so offensive that you need to medicate them out of your grandson? Why do you not see your grandson as a whole person even with autism? Why do you need him to be different and why do you need him to be cured? What if it turns out that his progress has nothing what so ever to do with this unproven quack anti-viral therapy and just the normal progress of your grandson’s autism? You strike me as a very uncaring person if you are so willing to subject your grandson to such treatment and not able to accept him for who he is. The science does not support your story, that being the case, we are not going to believe your story. And who is it that has been calling you names? I’ve not seen anything of the sort, actually.

      • Chris January 3, 2013 at 04:08 #

        Ugh, my editing is terrible:

        Plus promoting the use of an anti-viral therapy that has side effects and can promote resistance to the medication is doubly dangerous.

      • Chris January 3, 2013 at 15:00 #

        Mr. DeBolt:

        Don’t use an anti viral to fight an active viral infection because you might develop a resistance to the medication when you get what? A viral infection that may be devastating?

        Exactly. Anti-virals are not benign, and the viruses will evolve resistance. This is precisely why HIV treatment involves triple therapy that changes.

        And autism is not a viral disease.

  21. Science Mom January 3, 2013 at 03:47 #

    I’ve never seen such name calling outside of an elementary school playground.

    I didn’t call you any names but you aren’t short on the passive-aggressiveness. Don’t like it when it’s turned on you?

    Hey Matt if this continues are you going to ban them as well?

    You need protection? Put your big boy panties on if you are going to come onto a new site with proclamations of grandeur by yet another self-published charlatan. Your shtick isn’t new at all.

  22. Science Mom January 3, 2013 at 14:56 #

    Don’t use an anti viral to fight an active viral infection because you might develop a resistance to the medication when you get what? A viral infection that may be devastating? Is a viral illness that manifests itself with autistic like symptoms not worthy of treatment in your universe?

    The mere presence of a viral antigen is not diagnostic for an active and even clinically-relevant infection that warrants treatment with anti-viral medications, particularly long-term.

    With this post I will leave you and your closed minds with one last question. How can you have an epidemic that is genetically or behaviourly based. You can’t !

    Pardon me but aren’t you just a “business man”? What expertise do you possess in the realm of biological sciences that warrant such ignorant statements?

  23. lilady January 3, 2013 at 18:13 #

    I want to know why Dr. Goldman is prescribing Valtrex anti-viral for *treatment* of a supposed HHV-6 *active* infection when the indications for the use of Valtrex DO NOT include HHV-6?

    http://www.rxlist.com/valtrex-side-effects-drug-center.htm

    “Valtrex (valacyclovir) is an antiviral medication that is used to treat infections with herpes zoster (shingles), herpes simplex genitalis (genital herpes), and herpes labialis (cold sores). Valtrex is available in generic form. It is taken as caplets that may be taken with or without food….”

    I also want to know why Dr. Goldman is prescribing Valtrex for extended periods of time for a pediatric patient, when the only safety studies are with treating kids who have labialis HHV-1 infections and Herpes Zoster infections, with short courses of treatment?

    “Clinical Trials Experience in Pediatric Patients

    The safety profile of VALTREX (valacyclovir hydrochloride) has been studied in 177 pediatric patients 1 month to < 18 years of age. Sixty-five of these pediatric patients, 12 to < 18 years of age, received oral caplets for 1 to 2 days for treatment of cold sores. The remaining 112 pediatric patients, 1 month to < 12 years of age, participated in 3 pharmacokinetic and safety studies and received valacyclovir oral suspension. Fifty-one of these 112 pediatric patients received oral suspension for 3 to 6 days. The frequency, intensity, and nature of clinical adverse reactions and laboratory abnormalities were similar
    to those seen in adults."

    I provided the Physician's Prescribing Information (drug insert) up thread to DeBolt, yet
    he is still touting this physician's care…which leads me to believe that all of his comments are *suspect*.

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