Left Brain Right Brain

S.2449 – Autism CARES Act of 2014 has been introduced as is available for reviewing. CARES stands for “Autism Collaboration, Accountability, Research, Education, and Support” and is the Senate version of the bill to extend planning and funding for autism specific research past September 2014 when the current bill expires.

The bill was introduced by Senator Robert Menendez and Michael Enzi and so far has two more co-sponsors

Sen. Enzi, Michael B. [R-WY]
Sen. Kirk, Mark Steven [R-IL]
Sen. Franken, Al [D-MN]

The text of the proposed bill is copied below. The bill re-authorizes the previous law, extending the dates and funding requested as well as makes some changes.

1) the title is changed from the previous “Combating Autism Act” Combating is noted in the new bill where the word is being stricken from the previous law.

2) the bill would extend the law until 2019.

3) the Interagency Autism Coordinating Commitee would stay as the advisory/coordinating vehicle for autism research

4) The bill designates that the Secretary of the Department of Health and Human Services will chose someone within HHS to oversee autism research, including implementing the IACC’s Strategic Plan and insuring that research is not unnecessarily duplicative.

5) In a number of instances adults are specifically mentioned in the new bill. For example, “by inserting “for children and adults” after “reporting of State epidemiological data””. I.e. epidemiological data will in the future include adults.

6) The IACC will have between 1/3 and 1/2 members who are public representatives. I.e. a minority but a sizable minority will be public members.

7) If I read this correctly, IACC members will continue to be appointed by the Secretary of HHS. They will serve for 4 years, and can be renewed. If a member resigns, s/he will be replaced by someone chosen by the same method as the other appointees.

8) The IACC will continue to produce the Strategic Plan and a Summary of Advances in autism research.

9) In addition, the Secretary of HHS will be required to produce a report “Report on Young Adults and Transitioning Youth”

10) Funding levels–amounts which the bill authorizes to be appropriated–will increase from $161M/year to $190M/year.

This bill must be reconciled with the House bill (H.R.4631, the Combating Autism Reauthorization Act of 2014), pass both houses and get signed by the President. So far, this bill is progressing faster than the previous re-authorization. In that case, the bill did not get passed until the congress was almost out of session.

Here is the bill:

[Congressional Bills 113th Congress]
[From the U.S. Government Printing Office]
[S. 2449 Introduced in Senate (IS)]

113th CONGRESS
2d Session
S. 2449

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

_______________________________________________________________________

IN THE SENATE OF THE UNITED STATES

June 9, 2014

Mr. Menendez (for himself and Mr. Enzi) introduced the following bill;
which was read twice and referred to the Committee on Health,
Education, Labor, and Pensions

_______________________________________________________________________

A BILL

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the “Autism Collaboration,
Accountability, Research, Education, and Support Act of 2014” or the
“Autism CARES Act of 2014”.

SEC. 2. NATIONAL AUTISM SPECTRUM DISORDER INITIATIVE.

(a) In General.–The Secretary of Health and Human Services shall
designate an existing official within the Department of Health and
Human Services to oversee, in consultation with the Secretaries of
Defense and Education, national autism spectrum disorder research,
services, and support activities.
(b) Duties.–The official designated under subsection (a) shall–
(1) implement autism spectrum disorder activities, taking
into account the strategic plan developed by the Interagency
Autism Coordinating Committee under section 399CC(b) of the
Public Health Service Act (42 U.S.C. 280i-2(b)); and
(2) ensure that autism spectrum disorder activities of the
Department of Health and Human Services and of other Federal
departments and agencies are not unnecessarily duplicative.

SEC. 3. RESEARCH PROGRAM.

Section 399AA of the Public Health Service Act (42 U.S.C. 280i) is
amended–
(1) in subsection (a)(1), by inserting “for children and
adults” after “reporting of State epidemiological data”;
(2) in subsection (b)(1)–
(A) by striking “establishment of regional centers
of excellence” and inserting “establishment or
support of regional centers of excellence”; and
(B) by inserting “for children and adults” before
the period at the end;
(3) in subsection (b)(2), by striking “center to be
established” and inserting “center to be established or
supported”; and
(4) in subsection (e), by striking “2014” and inserting
“2019”.

SEC. 4. AUTISM INTERVENTION.

Section 399BB of the Public Health Service Act (42 U.S.C. 280i-1)
is amended–
(1) in subsection (b)(1), by inserting “culturally
competent” after “provide”;
(2) in subsection (c)(2)(A)(ii), by inserting “(which may
include respite care for caregivers of individuals with an
autism spectrum disorder)” after “services and supports”;
(3) in subsection (e)(1)(B)(v), by inserting before the
semicolon the following: “, which may include collaborating
with research centers or networks to provide training for
providers of respite care (as defined in section 2901)”;
(4) in subsection (f), by striking “grants or contracts”
and all that follows through “for individual with” and
inserting “grants or contracts, which may include grants or
contracts to research centers or networks, to determine the
evidence-based practices for interventions to improve the
physical and behavioral health of individuals with”; and
(5) in subsection (g), by striking “2014” and inserting
“2019”.

SEC. 5. INTERAGENCY AUTISM COORDINATING COMMITTEE.

Section 399CC of the Public Health Service Act (42 U.S.C. 280i-2)
is amended–
(1) in subsection (b)–
(A) in paragraph (1)–
(i) by striking “and annually update”;
and
(ii) by striking “intervention” and
inserting “interventions, including school and
community-based interventions”;
(B) by striking paragraph (2);
(C) by redesignating paragraph (1) as paragraph
(2), and inserting before such redesignated paragraph
the following:
“(1) monitor autism spectrum disorder research, and to the
extent practicable services and support activities, across all
Federal departments and agencies, including coordination of
Federal activities with respect to autism spectrum disorder;”;
(D) in paragraph (3), by striking “recommendations
to the Director of NIH”;
(E) in paragraph (4), by inserting before the
semicolon the following: “, and the process by which
public feedback can be better integrated into such
decisions”; and
(F) by striking paragraphs (5) and (6) and
inserting the following:
“(5) develop a strategic plan for the conduct of, and
support for, autism spectrum disorder research and services and
supports for individuals with an autism spectrum disorder and
the families of such individuals, which shall include–
“(A) proposed budgetary requirements; and
“(B) recommendations to ensure that autism
spectrum disorder research, services, and support
activities of the Department of Health and Human
Services and of other Federal departments and agencies
are not unnecessarily duplicative; and
“(6) submit to Congress and the President–
“(A) an annual update on the summary of advances
described in paragraph (2); and
“(B) an annual update to the strategic plan
described in paragraph (5), including any progress made
in achieving the goals outlined in such strategic
plan.”;
(2) in subsection (c)–
(A) in paragraph (1)–
(i) by striking the paragraph heading and
matter preceding subparagraph (A) and inserting
the following:
“(1) Federal membership.–The Committee shall be composed
of the following Federal members–”;
(ii) in subparagraph (C)–
(I) by inserting “, such as the
Administration for Community Living,
Administration for Children and
Families, the Centers for Medicare &
Medicaid Services, the Food and Drug
Administration, and the Health
Resources and Services Administration”
before the semicolon at the end; and
(II) by adding at the end “and”;
(iii) in subparagraph (D)–
(I) by inserting “and the
Department of Defense” after
“Department of Education”; and
(II) by striking at the end “;
and” and inserting a period; and
(iv) by striking subparagraph (E);
(B) in paragraph (2)–
(i) in the paragraph heading, by striking
“Additional” and inserting “Non-federal”;
(ii) in the matter preceding subparagraph
(A), by striking “Not fewer than 6 members of
the Committee, or \1/3\ of the total membership
of the Committee, whichever is greater” and
inserting “Not more than \1/2\, but not fewer
than \1/3\, of the total membership of the
Committee”;
(iii) in subparagraph (A), by striking
“one such member shall be an individual” and
inserting “two such members shall be
individuals”;
(iv) in subparagraph (B), by striking “one
such member shall be a parent or legal
guardian” and inserting “two such members
shall be parents or legal guardians”; and
(v) in subparagraph (C), by striking “one
such member shall be a representative” and
inserting “two such members shall be
representatives”; and
(C) by adding at the end the following:
“(3) Period of appointment; vacancies.–
“(A) Period of appointment for non-federal
members.–Non-Federal members shall serve for a term of
4 years, and may be reappointed for one or more
additional 4-year term.
“(B) Vacancies.–A vacancy on the Committee shall
be filled in the manner in which the original
appointment was made and shall not affect the powers or
duties of the Committee. Any member appointed to fill a
vacancy for an unexpired term shall be appointed for
the remainder of such term. A member may serve after
the expiration of the member’s term until a successor
has been appointed.”;
(3) in subsection (d)–
(A) by striking paragraph (2); and
(B) by redesignating paragraphs (3) and (4) as
paragraphs (2) and (3), respectively; and
(4) in subsection (f), by striking “2014” and inserting
“2019”.

SEC. 6. REPORTS.

Section 399DD of the Public Health Service Act (42 U.S.C. 280i-3)
is amended–
(1) in the section heading, by striking “report” and
inserting “reports”;
(2) in subsection (b), by redesignating paragraphs (1)
through (9) as subparagraphs (A) through (I), respectively, and
realigning the margins accordingly;
(3) by redesignating subsections (a) and (b) as paragraphs
(1) and (2), respectively, and realigning the margins
accordingly;
(4) by inserting after the section heading the following:
“(a) Progress Report.–”;
(5) in subsection (a)(1) (as so redesignated)–
(A) by striking “2 years after the date of
enactment of the Combating Autism Reauthorization Act
of 2011” and inserting “4 years after the date of
enactment of the Autism CARES Act of 2014”;
(B) by inserting “and the Secretary of Defense”
after “the Secretary of Education”; and
(C) by inserting “, and make publicly available,
including through posting on the Internet Web site of
the Department of Health and Human Services,” after
“Representatives”;
(6) in subsection (a)(2) (as so redesignated)–
(A) in subparagraph (A), (as so redesignated), by
striking “Combating Autism Act of 2006” and inserting
“the Autism CARES Act of 2014”;
(B) in subparagraph (B) (as so redesignated), by
striking “particular provision of Combating Autism Act
of 2006” and inserting “amendments made by the Autism
CARES Act of 2014”;
(C) by striking subparagraph (C) (as so
redesignated), and inserting the following:
“(C) information on the incidence and prevalence
of autism spectrum disorder, including available
information on the prevalence of autism spectrum
disorder among children and adults, and identification
of any changes over time with respect to the incidence
and prevalence of autism spectrum disorder;”;
(D) in subparagraph (D) (as so redesignated), by
striking “6-year period beginning on the date of
enactment of the Combating Autism Act of 2006” and
inserting “4-year period beginning on the date of
enactment of the Autism CARES Act of 2014 and, as
appropriate, how this age varies across populations
subgroups”;
(E) in subparagraph (E) (as so redesignated), by
striking “6-year period beginning on the date of
enactment of the Combating Autism Act of 2006” and
inserting “4-year period beginning on the date of
enactment of the Autism CARES Act of 2014 and, as
appropriate, how this age varies across populations
subgroups”;
(F) in subparagraph (F) (as so redesignated), by
inserting “and, as appropriate, how this average time
varies across populations subgroups” after
“disabilities”;
(G) in subparagraph (G) (as so redesignated)–
(i) by striking “including by various
subtypes,” and inserting “including by
severity level as practicable,”; and
(ii) by striking “child may” and
inserting “child or other factors, such as
demographic characteristics, may”; and
(H) by striking subparagraph (I) (as so
redesignated), and inserting the following:
“(I) a description of the actions taken to
implement and the progress made on implementation of
the strategic plan developed by the Interagency Autism
Coordinating Committee.”; and
(7) by adding at the end the following new subsection:
“(b) Report on Young Adults and Transitioning Youth.–
“(1) In general.–Not later than 2 years after the date of
enactment of the Autism CARES Act of 2014, the Secretary of
Health and Human Services, in coordination with the Secretary
of Education and in collaboration with the Secretary of
Transportation, the Secretary of Labor, the Secretary of
Housing and Urban Development, and the Attorney General, shall
prepare and submit to the Committee on Health, Education,
Labor, and Pensions of the Senate and the Committee on Energy
and Commerce of the House of Representatives, a report
concerning young adults with autism spectrum disorder and the
challenges related to the transition from existing school-based
services to those services available during adulthood.
“(2) Contents.–The report submitted under paragraph (1)
shall contain–
“(A) an overview of policies and programs relevant
to young adults with autism spectrum disorder relating
to post-secondary school transitional services,
including an identification of existing Federal laws,
regulations, policies, research, and programs;
“(B) demographic characteristics of youth
transitioning from school-based to community-based
supports;
“(C) proposals on establishing best practices
guidelines to ensure–
“(i) interdisciplinary coordination
between all relevant services providers
receiving Federal funding;
“(ii) coordination with transitioning
youth and the family of such transitioning
youth; and
“(iii) the inclusion of the transitioning
youth’s Individualized Education Program as
prescribed in section 614 of the Individuals
with Disabilities Education Act (20 U.S.C.
1414);
“(D) comprehensive approaches to transitioning
from existing school-based services to services
available during adulthood, including–
“(i) services that increase access to, and
improve integration and completion of, post-
secondary education, peer support, vocational
training (as defined in section 103 of the
Rehabilitation Act of 1973 (29 U.S.C. 723)),
rehabilitation, self-advocacy skills, and
competitive, integrated employment;
“(ii) community-based behavioral supports
and interventions;
“(iii) community-based integrated
residential services, housing, and
transportation;
“(iv) nutrition, health and wellness,
recreational, and social activities;
“(v) personal safety services for
individuals with autism spectrum disorder
related to public safety agencies or the
criminal justice system; and
“(vi) evidence-based approaches for
coordination of resources and services once
individuals have aged out of post-secondary
education; and
“(E) proposals that seek to improve outcomes for
adults with autism spectrum disorder making the
transition from a school-based support system to
adulthood by–
“(i) increasing the effectiveness of
programs that provide transition services;
“(ii) increasing the ability of relevant
service providers to provide supports and
services to underserved populations and
regions;
“(iii) increasing the efficiency of
service delivery to maximize resources and
outcomes, including with respect to the
integration of and collaboration among services
for transitioning youth;
“(iv) ensuring access to all services
necessary to transitioning youth of all
capabilities; and
“(v) encouraging transitioning youth to
utilize all available transition services to
maximize independence, equal opportunity, full
participation, and self-sufficiency.”.

SEC. 7. AUTHORIZATION OF APPROPRIATIONS.

Section 399EE of the Public Health Service Act (42 U.S.C. 280i-4)
is amended–
(1) in subsection (a), by striking “fiscal years 2012
through 2014” and inserting “fiscal years 2015 through
2019”;
(2) in subsection (b), by striking “fiscal years 2011
through 2014” and inserting “fiscal years 2015 through
2019”; and
(3) in subsection (c), by striking “$161,000,000 for each
of fiscal years 2011 through 2014” and inserting
“$190,000,000 for each of fiscal years 2015 through 2019”.

—
By Matt Carey

note: I serve on the IACC as a public member but my comments here and elsewhere are my own.

Congressman Bill Posey has an article on The Hill entitled: Fix the Combating Autism Act. I won’t copy the whole article here, but it begins:

Autism Spectrum Disorder has increased dramatically in the last 25 years. It is a crisis. What will legislators do with a federal program which, after eight years and $1.7 billion, has failed to truly address this crisis? Sadly, Washington is on a path to rush through a five-year reauthorization, raise spending 20 percent and hope for better results without addressing fundamental structural flaws in the current program.

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