I wrote a lengthy response to the article in the comments and I copy it below as an open letter to the Congressman.
As always, all comments and views are my own.
Congressman Posey,
I appreciate your attention to the autism communities, but I wish you would seek out and understand the positions of a greater number of viewpoints within the communities. So far, you appear to be listening primarily to the minority of parent-advocates who promote the failed idea of a vaccine-induced epidemic. The autism communities are much more broad than that. And our needs reflect that.
I notice that in this article you don’t mention vaccines, while elsehwere you have been vocal on this topic. I notice that the Coalition that you mention avoids discussion of vaccines as well, while their members are all very strong proponents of the failed notion of a vaccine-induced autism epidemic.
Are you aware that most autism parents do not believe that vaccines cause autism? About 40% recently answered that they felt this was a possible cause. Likely much fewer believe that vaccines were responsible for their own child’s autism.
And the science available says that minority is wrong. We have a limited amount of resources. While you may think of this in terms of money, I think of this in terms of quality researchers. There just aren’t that many to focus on all the questions of autism etiology. Should we keep going back to the question of autism and vaccines after over a decade of negative results?
If one wants to discuss failures, the failure of the vaccine-hypothesis is one of the greatest not within our communities, but within scientific research in general. Many millions of dollars, many researcher man-hours and again and again we see the same answer: no.
That was a lot of duplicative research. The studies approached the questions from various angles and replicated the answers. Questions have been posed and answered about thimerosal and the MMR–they do not increase autism risk. Those who lobby you for increased attention for vaccines deny the results of multiple studies, multiple groups.
You asked a question at a recent hearing. You asked about which studies have been performed on thimerosal without Poul Thorsen as an author. Why were you not aware of the many such studies? You or a staffer could easily use Pubmed and verify this. Much more to the point, why are you propagating this ad hominem attack on the autism-vaccine research? I decry the actions of Poul Thorsen. Not just as a taxpayer who doesn’t want to see money stolen. As an autism parent I decry his actions for feeding the groups who promote the idea of a vaccine-induced autism epidemic. In working on such important topics, Thorsen held a public trust and he betrayed that trust. The cost to Americans in general and to the autism communities in specific has been far greater than the value of the funds he took. Your statements are a part of the fallout of that damage.
Autism is a hugely important topic which deserves a great deal of attention. We don’t need to invoke epidemics or terms like “crisis” in order to take this seriously. We need accurate information. So far, we don’t really have accurate information on the prevalence and incidence of autism over time. A comment out this week in the scientific literature addresses exactly this issue: can we trust the autism prevalence estimates?
“I was recently made aware of some suggested changes proposed by a coalition of national autism organizations representing those children and adults most severely affected by autism, the Autism Reform Policy Coalition. These organizations represent those living with autism every day.”
With all due respect, these groups do not “represent those living with autism every day”. They are a coalition of small parent-advocate groups focused on the failed idea of a vaccine-induced epidemic of autism. There isn’t a group of autistics in the coalition. There isn’t a group with the majority view that vaccines are not involved in the etiology of autism. There isn’t a group that allows members to elect officers. They represent themselves, a small group of officers, many shared across the supposedly separate organizations listed in the coalition. They are vocal, but they do not represent the communities.
These groups also largely promote pseudo-medical “therapies” which include some which are useless and even harmful. Frankly, some are abusive. These “therapies” are often sold with the idea that they “heal vaccine injury”. This is why so many of us in the autism communities speak out against the vaccine-induced-autism-epidemic. The idea is not just wrong, it causes harm. A great deal of harm.
“At a recently called House Oversight Subcommittee meeting, Dr. Insel admitted that after eight years and spending $1.7 billion, the programs developed in the CAA have failed to determine the causes of the enormous increase of the prevalence of autism…”
I’ll let Dr. Insel respond to what he did or did not say in the hearing. I will say that he is very much aware of the research showing that at least a sizable fraction of the increase in the prevalence of identified autism is due to social influences. I know this because I’ve seen him interview one of the key researchers involved with this work.
We know that at least some of the increase is due to social influences. Note the phrase “at least”. Changes in the way we identify and classify autism have driven part of the increase. Changes in awareness also, some not quantified. And this is not limited to an expansion of autism to include more individuals without intellectual disability. A recent study looking at the UCLA/Utah data taken in the 1980’s showed that a large fraction of those with severe and profound intellectual disability were not recognized as autistic at the time.
The CDC estimates of the prevalence of identified autism always include large fractions of children who were not previously identified autistic.
Think about that–we have been misclassifying people for decades. There is a large population–adults and children–who are not getting the services and supports they need. If anything rises to the level of crisis, it is this. And yet the coalition you mention actively denies the existence of these unidentified autistics.
Think about that when you assert that they represent those affected by autism.
Is the actual fraction of the population with autism increasing? This is a very different question that the question of whether the fraction of the population identified with autism is increasing. We can answer the latter question–yes, we have many more identified with autism today than before. We can answer the “why” of that question at least in part–social influences have driven the rate of identified autism up. As to the former question–how much of the increase represents a “true” increase in autism prevalence, we don’t know. Two groups have estimated that between 4 and 11% of the increase is “real”. And likely genetic. Children of older parents have an increased risk of autism, and parents are having children later in life. Recall that Down Syndrome, a genetic condition, risk increases with maternal age.
Keep in mind, social influences are “real”. Understanding and quantifying those are important. For one, to help quantify a possible secular increase in autism incidence. For another, if we understand the social influences we can better identify those who remain under served and under supported.
Let’s look at the questions posed by the increase in identified autism. First, there are social influences and we should be responding to those data. Second, actual increases in autism incidence could include genetic etiologies. Will we ever know what the “true” prevalence of autism has been over history? Possibly (maybe even likely) not. But do we need an “epidemic” of autism to focus seriously on environmental risk factors? No. We do not. In fact, by focusing attention on the increased prevalence (which we know to be at least largely driven socially) we will not only be likely looking in the wrong place for drivers of increased prevalence, we will miss those risk factors which are not increasing with time.
Consider Congental Rubella Syndrome. Likely the first identified factor increasing autism risk. Is there a way to identify the impact of vaccination on the fraction of autism prevalence due to CRS? No. There’s just too much noise in the signal. But, researchers recently did quantify this–the number of autism cases *prevented* over the past decade by this simple public health measure.
To put things simply–there is no known environmental risk factor increasing autism prevalence. There are multiple social factors increasing the prevalence of identified autism. There are known genetic risk factors which increase the risk of autism. If we were to base our funding decisions on the data on hand, we would put little into environmental risk factors and more into social drivers and genetic research. I do not suggest this as a wise course of action. Instead I present this as an example of the failed and flawed logic of the Coalition. They would claim that genetic research has failed (it hasn’t) and that the basis for environmental risk factors is stronger than it is.
For the record, I sit on the IACC. My comments here and elsewhere are my own: they do not represent the views of the IACC. Having spent the past few years actively involved with the IACC, and years before that intently observing the IACC, I will say that the IACC does what Congress structured it to do. It does it well enough that other advocacy groups would like to emulate this effort. It does not–because it can not–direct which research actually gets performed.
But to suggest that the IACC strategic plan sits unread is false. You write:
“Instead, the IACC plan sits on a shelf while the NIH actually funds autism research through an entirely different set of processes and priorities, completely divorced from the strategic plan. ”
This poses many questions. First, have you read the Plan? You suggest that when you state that it sits on a shelf. If not, why not? Second, to state this ignores the process through which the Plan is drafted. The federal members of the IACC include representatives from most of the agencies which fund autism research. Directors of various Institutes of the NIH, CDC, representatives from DoD and FDA not only are present for the drafting of the Plan, they participate in the process. Decision makers in the Federal Government are well aware of the Strategic Plan.
With all due respect, the phrase “while the NIH actually funds autism research through an entirely different set of processes and priorities, completely divorced from the strategic plan ” is just plain incorrect. First, funders of autism research within the Federal government are not limited to the NIH. Second, the data speaks for itself: the vast majority of topics in the Plan are funded. Some underfunded, some overfunded. But funded. Are we to assume this is just a random coincidence?
Consider if you will just one of the outside funders of autism research: the Simons Foundation. Much of their focus has been on genetics. Their contribution has been very substantial. Rather than attack the focus on genetics research and claim (incorrectly as many in the Coalition have done) that genetics research has not been fruitful, I say thank you, very much, to private funders for the research they have funded in genetics and elsewhere.
While on the topic of genetics, there are two myths promoted by groups such as those in the Coalition. First, that there can be no genetic epidemic. This is not true, as genetically driven risk factors due to aging parents can drive a “true” increase in autism prevalence. The second myth is that genetic conditions are not treatable while environmental caused conditions are. As a person with an environmentally caused disability, I can say that with certainty that environmental does not equate with treatable. As to genetic conditions, one of the hot areas of autism treatment research has involved Fragile-X syndrome, a genetic condition. People with Down Syndrome, a genetic condition, are living longer and healthier lives due to a better understanding of the health conditions associated with DS. If we ignore genetic research, as those on the Coalition urge us to do, we close the doors to many potential avenues for treatment research.
We don’t need to label autism as a “crisis” or an “epidemic” to take it seriously. Likely, about 2.5% of the population is autistics. A sizable minority whose substantial needs deserve attention. Much more, what has become increasingly more obvious over the past decade: the needs of that 2.5% are very diverse. Research focused on, say, the important topic of supporting young adults in the mainstream workplace will not likely address the needs of the nonverbal adolescent with intellectual disability. For these reasons and more, more attention, more funding, should be focused on autism.
And we need to accept something that perhaps Congress doesn’t want to hear: we need to be in this for the long haul. We need a long term focus on autism. Since my child was first diagnosed I have heard simplistic answers from groups in and like those in the Coalition. If it was all so simple as “it’s vaccines and here is the cure of the day for vaccine injury” this discussion would not be ongoing. But it’s not. The simplistic approach offered by the Coaltion has been and continues to be a false path. We need to lay the groundwork to understand the biology behind autism. We need to understand the supports needed by this population–diverse in presentation and age. And this is no easy task. For decades people have recognized that autism is not a single condition.
Has the CAA succeeded? In very simplistic terms, the funding level for autism research has grown since the first CAA was enacted in 2006. When Federal stimulus funds became available, there was a Strategic Plan in place to justify allocating a large amount of those funds to autism research. As funding levels have declined, autism has been able to hold relatively steady. Can we say with certainty that the CAA is responsible for this? Possibly not, but it seems very likely. And for that I thank congress.
There’s an old saying in the science community: there’s more politics in science than science in politics. We need less politics in autism science, not more. There’s a line between advocacy and politics. One example where that line is being crossed has been the Oversight hearings focused on vaccines. They have been damaging to the communities. Another is the plan to make members of the IACC politically appointed by Congress. Another is the repeated efforts to keep the vaccine-epidemic idea alive through political action, while the idea has failed scientifically.
We need a mechanism whereby funding can be channeled to quality researchers who are working on topics which will improve the lives of all autistics. I hope we can keep the focus on that and not on how to increase the political presence of a few parent advocates with failed ideas. Don’t get me wrong: the current structure is far from ideal. But as we create a new structure, let’s keep ourselves focused on the real needs of the entire community.
Matthew J. Carey
Left Brain Right Brain 
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