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The proposed Autism CARES Act of 2014 (Senate Bill 2449)

21 Jun

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.

Meeting of the Interagency Autism Coordinating Committee: July 8, 2014

20 Jun

The U.S. Interagency Autism Coordinating Committee (IACC) will hold a full committee meeting on July 8. People can attend in person or listen and watch remotely. I would strongly encourage autistics and parents to be heard by submitting public comments (via IACCPublicInquiries@mail.nih.gov)

The announcement is below.

Meeting of the Interagency Autism Coordinating Committee

Please join us for an IACC Full Committee meeting that will take place on Tuesday, July 8, 2014 from 9:00 a.m. to 5:00 p.m. ET at The Neuroscience Center, 6001 Executive Boulevard, Conference Rooms C and D, Rockville, Maryland 20852. 

Onsite registration will begin at 8:00a.m.

Agenda: The committee will discuss committee business, agency updates and issues related to autism spectrum disorder (ASD) research and services activities.

Meeting location:

The Neuroscience Center

6001 Executive Boulevard, Conference Rooms C and D

Rockville, Maryland 20852

 

 Nearest Metro stop:

White Flint Metro Station – Red Line

In the interest of security, visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit upon entrance to the Neuroscience Center.

Pre-Registration:

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Please visit the IACC website for access and information about registering.

Public Comment – Deadlines:

Notification of intent to present oral comments: Monday, June 30th by 5:00p.m. ET

Submission of written/electronic statement for oral comments: Tuesday, July 1st by 5:00p.m. ET

Submission of written comments: Tuesday, July 1st by 5:00p.m. ET

 

Remote Access:

The meeting will be remotely accessible by videocast  (http://videocast.nih.gov/) and conference call.  Members of the public who participate using the conference call phone number will only be able to listen to the meeting.
Conference Call Access
USA/Canada Phone Number: 888-946-7606

Access code: 9653752

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed below at least five days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at helpdeskiacc@gmail.com or call the IACC Technical Support Help Line at 415-652-8023.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov


By Matt Carey

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

IACC meeting coming up: submit comments now

20 Jun

The U.S. Interagency Autism Coordinating Committee (IACC) will hold a meeting on July 8th. Public comments will be accepted until July 1st. I would strongly encourage stakeholders to submit public comments. Be heard. The contact email address is: IACCPublicInquiries@mail.nih.gov

Here is the call for comments from the meeting announcement:

Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. Eastern on Monday, June 30, 2014, with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. Eastern on Tuesday, July 1, 2014. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on the number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline.

In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 5:00 p.m. Eastern on Tuesday, July 1, 2014. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. Eastern, Tuesday, July 1, 2014 will be presented to the Committee prior to the meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. EST, July 1, 2014 deadline through July 7, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. All written public comments and oral public comment statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record.


By Matt Carey

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

An open letter to Congressman Posey

14 Jun

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

IACC releases 2013 Strategic Plan Update

20 May

The U.S. Interagency Autism Coordinating Committee releases each year an update the Strategic Plan for ASD Research. This year’s update differs from previous years in that the format was more retrospective: an accounting of the changes in research and understanding in the past five years.

Below is the press release from the Office of Autism Research Coordination announcing the update:

2013 IACC Strategic Plan Update Provides Accounting of ASD Research Progress Over Last 5 Years (pdf-45KB)

The Interagency Autism Coordinating Committee (IACC) has released its 2013 Strategic Plan Update, which provides an overview of funding and scientific advances made in autism research since 2009, when the IACC Strategic Plan for ASD Research was first published. Approximately $1.5 billion has been dedicated to ASD research over the past 5 years through the combined efforts of U.S. government agencies and private organizations. The 2013 Strategic Plan Update describes funding trends and research advances that capture the significant progress that has been made in all seven critical research areas of the Strategic Plan over the past 5 years, providing an accounting for which funding and research goals have been achieved and identifying key areas where intensified efforts are warranted.

IACC Chair and NIMH Director Dr. Thomas Insel said, “The state of the science has dramatically changed in the ASD field over the last 5 years. The 2013 Strategic Plan Update provides an accounting of that change, through investments and the evolution of research since the 2009 publication of the original Strategic Plan. This investment has translated to progress in all seven research areas outlined by the Plan,” which include risk factors, treatments and interventions, services, lifespan issues, and surveillance and infrastructure.

Since the release of the first IACC Strategic Plan in 2009, scientific advances have been made in the understanding of the key windows of fetal and infant development, when changes in gene expression, brain architecture and behavior can be linked to the later development of autism, along with potential environmental contributors to ASD risk such as parental age, maternal health conditions and prematurity. Advances have also been made in the development of new and improved screening tools, demonstration of the efficacy of various early intervention strategies, and increased information about critical services gaps, such as transition and housing, as well as data supporting effective services strategies. Research infrastructure has also greatly expanded in the past 5 years, with shared data repositories providing an unprecedented opportunity for collaboration and large-scale data analysis.

In most research areas, including those where funding fully met recommendations, the Committee suggested that additional investment would be needed to fully achieve the aspirational goals of making appropriate diagnosis, intervention and services available to all individuals with ASD, including people of all ages, cultural groups and levels of ability.

The 2013 Update identified several overarching themes that have emerged and that the Committee felt were critical for accelerating the progress of ASD research in the next 5 years. These include:

Scaling up screening tools, interventions, and services approaches for transition from lab to community settings.
Promoting inclusion of research subjects from the full range of ASD disability, from all periods of the lifespan, and from underserved populations.
Translating “practice to research,” by encouraging study of current real-world practices to inform research studies.
Characterizing the heterogeneity of ASD, including genotypes, subtypes, and co-morbid health conditions, in order to develop a personalized medicine approach.
Leveraging existing infrastructure to increase research speed and efficiency.
Applying strategies from other fields to ASD research.
Standardizing the ways in which outcomes are measured in clinical trials and services research to determine the effectiveness of interventions and services.
In the 2013 Strategic Plan Update, the IACC provides the most detailed accounting to date, using both quantitative and qualitative data. This included review of detailed portfolio analysis data and the literature, as well as consultation with over 25 external experts and review of comments received from the public, to assess progress across all objectives and aspirational goals described in the Strategic Plan since its initial conception.

Overall, the Committee hopes that this latest IACC Strategic Plan Update will provide Congress, federal agencies, advocates, and people with autism and their families with helpful information about important research progress that has been made to date, as well as areas that need further attention, in order to support a robust research effort that will lead to enhanced interventions, services and opportunities for people with autism across cultures, across the full spectrum of ability, and across the lifespan.


By Matt Carey

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

Hearing tomorrow on Examining the Federal Response to Autism Spectrum Disorders

19 May

The Committee on Oversight and Government Reform through the subcommittee on Government Operations will be holding a hearing tomorrow (May 20): Examining the Federal Response to Autism Spectrum Disorders

Testifying will be:

Thomas R. Insel, M.D.
Director, National Institute of Mental Health
Chair, Interagency Autism Coordinating Committee

Mr. Michael K. Yudin
Acting Assistant Secretary, Office of Special Education and Rehabilitative Services
U.S. Department of Education

Marcia Crosse, Ph.D.
Director, Health Care
U.S. Government Accountability Office

Likely this is based partly on the Government Accountability Office report last year: Better Data and More Coordination Needed to Help Avoid the Potential for Unnecessary Duplication and the introduction of the reauthorization bill for the Combating Autism Act.


By Matt Carey

Combating Autism Reauthorization Act of 2014

17 May

The text of the bill to reauthorize the Combating Autism Act is below.

A few notes:

The bill does include the “Combating” term that is the topic of controversy. This is contrary to what I wrote in my previous article on the reauthorization.

There are not two legislatively appointed representatives to the IACC as previously reported but four. Two from the House. Two from the Senate.

There is a strong emphasis on focusing on adult autistics. Consider the last section “REPORT TO CONGRESS ON DEMOGRAPHICS AND NEEDS OF ADULTS WITH AUTISM SPECTRUM DISORDER”

Much as I desperately would love to see this work done, I do not generally support legislative mandated research. This is a report to congress to inform them on an area which, frankly, they need to hear about.

The demographics and needs of autistic adults is a huge hole in the body of knowledge we have about autism. And while politically active groups are wasting their time and money on congressional hearings to validate their failed views on vaccines,


By Matt Carey
note: I serve as a public member to the IACC but all comments and views here and elsewhere are my own.

text of the proposed bill:

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 “Combating Autism Reauthorization Act
of 2014”.

SEC. 2. REAUTHORIZATION OF PROGRAMS RELATING TO AUTISM.

(a) National Autism Spectrum Disorder Initiative.–Part R of title
III of the Public Health Service Act (42 U.S.C. 280i et seq.) is
amended–
(1) by redesignating sections 399AA through 399EE as
sections 399BB through 399FF, respectively; and
(2) by inserting before section 399BB, as redesignated, the
following:

“SEC. 399AA. NATIONAL AUTISM SPECTRUM DISORDER INITIATIVE.

“(a) Establishment.–For the purposes described in subsection (b),
the Secretary shall designate an official within the Department of
Health and Human Services to establish and oversee a National Autism
Spectrum Disorder Initiative (in this section referred to as the
`Initiative’).
“(b) Purposes.–The purposes of the Initiative shall be–
“(1) to implement a strategic plan for the conduct of, and
support for, autism spectrum disorder research, taking into
account the strategic plan developed by the Interagency Autism
Coordinating Committee under section 399DD(b); and
“(2) to ensure that autism spectrum disorder research
programs and activities of the Department of Health and Human
Services are not unnecessarily duplicative of other Federal
research programs and activities.”.
(b) Developmental Disabilities Surveillance and Research Program.–
Section 399BB of the Public Health Service Act (42 U.S.C. 280i), as
redesignated, is amended–
(1) in subsection (a), by inserting “for children and
adults” after “reporting of State epidemiological data”;
(2) in subsection (b)(1), by striking “establishment of
regional centers of excellence” and inserting “establishment
or support of regional centers of excellence”;
(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”.
(c) Autism Education, Early Detection, and Intervention.–Section
399CC(g) of the Public Health Service Act (42 U.S.C. 280i-1), as
redesignated, is amended by striking “2014” and inserting “2019”.
(d) Interagency Autism Coordinating Committee.–
(1) Appointment of members by congressional leaders.–
Section 399DD(c)(1) of the Public Health Service Act (42 U.S.C.
280i-2(c)(1)), as redesignated, is amended–
(A) in subparagraph (D), by striking “and” at the
end;
(B) by redesignating subparagraph (E) as
subparagraph (I); and
(C) by inserting after subparagraph (D) the
following:
“(E) one member appointed by the Speaker of the
House of Representatives;
“(F) one member appointed by the majority leader
of the Senate;
“(G) one member appointed by the minority leader
of the House of Representatives;
“(H) one member appointed by the minority leader
of the Senate; and”.
(2) Preventing duplication.–Section 399DD(b) of the Public
Health Service Act (42 U.S.C. 280i-2(b)), as redesignated, is
amended–
(A) in paragraph (5), by striking “and” at the
end;
(B) by redesignating paragraph (6) as paragraph
(7); and
(C) by inserting after paragraph (5) the following:
“(6) include in such strategic plan recommendations to
ensure that autism spectrum disorder research programs and
activities of the Department of Health and Human Services are
not unnecessarily duplicative of other Federal research
programs and activities; and”.
(3) Extension of sunset provision.–Section 399DD(f) of the
Public Health Service Act (42 U.S.C. 280i-2), as redesignated,
is amended by striking “2014” and inserting “2019”.
(e) Report to Congress.–Section 399EE of the Public Health Service
Act (42 U.S.C. 280i-3), as redesignated, is amended–
(1) in subsection (a), by striking “Combating Autism
Reauthorization Act of 2011” and inserting “Combating Autism
Reauthorization Act of 2014”; and
(2) in subsection (b)–
(A) in paragraph (1), by striking “provisions of
the Combating Autism Act of 2006” and inserting
“provisions of this part, section 404H, and section
409C”;
(B) in paragraph (2), by striking “provisions of
Combating Autism Act of 2006” and inserting
“provisions of this part, section 404H, and section
409C”;
(C) in paragraph (3), by striking “Combating
Autism Act of 2006” and inserting “Combating Autism
Reauthorization Act of 2011”;
(D) in paragraphs (4) and (5), by striking “over
the 6-year period beginning on” each place it appears
and inserting “since”;
(E) in paragraph (8), by striking “and” at the
end;
(F) in paragraph (9), by striking the period at the
end and inserting “; and”; and
(G) by adding at the end the following:
“(10) 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.”.
(f) Authorization of Appropriations.–Section 399FF of the Public
Health Service Act (42 U.S.C. 280i-4), as redesignated, is amended–
(1) in subsection (a)–
(A) by striking “399AA” and inserting “399BB”;
and
(B) by striking “fiscal years 2012 through 2014”
and inserting “fiscal years 2015 through 2019”;
(2) in subsection (b)–
(A) by striking “399BB” and inserting “399CC”;
and
(B) by striking “fiscal years 2011 through 2014”
and inserting “fiscal years 2015 through 2019”; and
(3) in subsection (c)–
(A) by striking “399CC” and inserting “399DD”;
and
(B) 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”.

SEC. 3. REPORT TO CONGRESS ON DEMOGRAPHICS AND NEEDS OF ADULTS WITH
AUTISM SPECTRUM DISORDER.

(a) In General.–Not later than 24 months after the date of
enactment of this Act, the Comptroller General of the United States
shall complete a study and submit to the Congress a report on the
demographics and needs, if any, of individuals in the United States
with an autism spectrum disorder (in this section referred to as
“ASD”).
(b) Issues To Be Addressed.–The study and report under subsection
(a) shall–
(1) address the demographics of individuals with ASD making
the transition from a school-based support system to adulthood;
(2) address the needs, if any, of adults with ASD with
respect to–
(A) community integration;
(B) housing and residential supports;
(C) employment;
(D) transportation;
(E) vocational training and rehabilitation;
(F) continued education;
(G) health care and social services;
(H) speech therapy;
(I) public safety; and
(J) day habilitation activities, including those to
provide a safe, respectful, and stimulating environment
that allows participants to become active members of
their community;
(3) provide an overview of Federal, State, and local
government policies and programs, and any available private
(including private nonprofit) sector assistance, for addressing
the needs identified in paragraph (2); and
(4) provide policy recommendations to–
(A) improve outcomes for adults with ASD making the
transition from a school-based support system to
adulthood;
(B) enhance the effectiveness of the policies,
programs, and assistance described in paragraph (3);
(C) ensure integration of and collaboration among
services for addressing the needs of adults with ASD;
and
(D) encourage independent living, equal
opportunity, full participation, and economic self-
sufficiency.
(c) Survey.–
(1) In general.–In carrying out this section, the
Comptroller General shall conduct a survey of public and
private sector stakeholders on–
(A) the needs, if any, of adults with ASD;
(B) the services and resources available for
addressing such needs; and
(C) the effectiveness of such services and
resources.
(2) Stakeholders.–The stakeholders to be surveyed under
paragraph (1) include the following:
(A) Individuals from the business community
representing both large and small businesses.
(B) Institutions of higher education, community
colleges, vocational schools, and university centers
for excellence in developmental disabilities.
(C) Social service providers, including case
management experts and health care providers.
(D) Vocational rehabilitation experts.
(E) State and local housing departments and
nonprofit organizations that provide housing services
for individuals with disabilities.
(F) Individuals with ASD, parents of individuals
with ASD, and representatives from advocacy groups that
focus on individuals with ASD.
(G) Officials or employees of the Federal
Government responsible for overseeing disability
services at each of the following departments and
agencies:
(i) The Department of Health and Human
Services, including the Administration for
Children and Families, the Centers for Disease
Control and Prevention, the Centers for
Medicare & Medicaid Services, the Health
Resources and Services Administration, and the
Administration for Community Living.
(ii) The Department of Education.
(iii) The Department of Housing and Urban
Development.
(iv) The Department of Labor.
(v) The Department of Justice.
(vi) The Department of Transportation.
(vii) Any other Federal departments and
agencies determined appropriate by the
Comptroller General.

IACC Issues Statement Regarding Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder

7 Apr

The update of the DSM to the DSM-5 was met with a great deal of discussion by the autism communities. The U.S. Interagency Autism Coordinating Committee (IACC) has prepared a statement “IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder“. The statement can be found online and as a pdf.

The press release for the statement is below.

For Immediate Release
Wednesday, April 2, 2014

Contact: Office of Autism Research Coordination/NIH
E-mail: IACCPublicInquiries@mail.nih.gov
Phone: (301) 443-6040

IACC Issues Statement Regarding Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder (PDF – 115 KB)

Today, on World Autism Awareness Day 2014, the Interagency Autism Coordinating Committee (IACC) issued a statement regarding the scientific, practice, and policy implications of changes in the diagnostic criteria for Autism Spectrum Disorder (ASD) that were made in the most recent update of the Diagnostic and Statistical Manual of Mental Disorders (DSM). This link exits the Interagency Autism Coordinating Committee Web site

In 2013, DSM was revised for the release of its fifth edition, consolidating previous autism-related diagnoses together into a single “autism spectrum disorder” diagnosis defined by two groups of symptoms—social communication impairments and restricted, repetitive behaviors—while including intellectual and language disabilities as additional labels that can be added onto a primary ASD diagnosis.[1, 2] To address a variety of issues surrounding the implementation of the new criteria, the IACC assembled a planning group composed of IACC members and invited experts in the field to advise the IACC on this subject.[3] Based on the group’s findings, the IACC issued a statement, describing a range of scientific, practice, and policy implications that have arisen as a result of the changes in the DSM criteria, and providing recommendations for future research and implementation of the new criteria.

“The new criteria reflect advances in our understanding of ASD. At the same time, many in the community have raised questions about how the changes will affect people in the community,” stated Dr. Geraldine Dawson, who chaired the DSM-5 planning group. “In this report, we considered how the diagnostic changes might affect individuals and families, as well as the future of the field, and tried to anticipate needs that will arise in the research, clinical practice, and services arenas. We hope this report will help address some of the concerns that have been raised and provide valuable guidance to individuals, families and professionals.”

In the statement, the IACC acknowledged concerns about the potential for changes in the diagnostic criteria to impact access to services, urging that, “Any revision of the diagnostic criteria must be made with great care so as to not have the unintended consequence of reducing critical services aimed at improving the ability of persons with autism.” The Committee recommended research to further assess the reliability and validity of the DSM-5 ASD criteria, and to understand the potential impact of these new criteria on diagnosis, prevalence estimates, and access to services.

The IACC also identified several key practice and policy issues that will be important for the community to consider as DSM-5 is implemented in real-world settings, especially with respect to services. As the new criteria have not yet been rigorously tested in young children, adults and ethnically-diverse populations, the Committee cautioned clinicians to pay special attention to individuals with obvious ASD symptoms who narrowly missed being diagnosed with ASD according to the new criteria. In addition, the Committee strongly emphasized that, “Services should be based on need rather than diagnosis; it would not be appropriate for a child to be denied ASD-specific services because he or she does not meet full DSM-5 criteria if a qualified clinician or educator determines that the child could benefit from those services.”

With this statement and its list of recommendations for future research, practice and policy, the IACC endeavors to support implementation of DSM-5 with appropriate caution and rigor. Using these criteria to benefit people with ASD remains the primary goal, ensuring access to interventions, services and supports that will help people on the autism spectrum optimize their health and well-being, and meaningfully participate in all aspects of community life.

References

1 American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Health Disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

2 Diagnostic Criteria for ASD from the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)

3 Roster of the IACC DSM-5 Planning Group

DSM-5 Resources

Additional resources related to the DSM-5 and autism spectrum disorder can be found on the IACC website.

Note: I serve as a public member to the IACC but my statements here and elsewhere are my own.


By Matt Carey

IACC Meeting this Tuesday

6 Apr

The U.S. Interagency Autism Coordinating Committee (IACC) will meet this Tuesday, April 8. The meeting will be held at the NIH campus in Bethesda, Maryland. For those who can not attend in person, the meeting is videocast live and a listen-in conference call number is available (Dial: 888-950-8042, Access code: 8689681)

The draft agenda is below.

9:00 AM Welcome, Introductions, Roll Call and Approval of Minutes

Thomas Insel, M.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), NIMH and
Executive Secretary, IACC

9:15 Science Update

Thomas Insel, M.D.
Director, NIMH and Chair, IACC

9:30 CDC Prevalence

Jon Baio, Ed.S.
Epidemiologist
U.S. Centers for Disease Control and Prevention (CDC)

10:00 Birth to 5: Watch Me Thrive!

Linda Smith
Deputy Assistant Secretary and Inter-Departmental Liaison
Early Childhood Development
Administration for Children and Families (ACF)

10:15 Break

10:30 The White House BRAIN Initiative

Story Landis, Ph.D.
Director, National Institute of Neurological Disorders and Stroke (NINDS)

10:45 Autism Research Program (ARP), Congressionally Directed Medical
Research Programs (CDMRP)

Donna Kimbark, Ph.D.
Program Manager, Autism Research Program, Congressionally Directed
Medical Research Programs
U.S. Department of Defense (DoD)

11:15 Teaching a Neurodiversity Course

John Elder Robison
Self Advocate, Parent, Author
Neurodiversity Scholar in Residence
College of William & Mary

11:35 Lunch

1:00 PM Public Comment

1:45 Discussion of Public Comment

2:00 Services Research for Autism Spectrum Disorder across the Lifespan
(ServASD)

Denise Juliano-Bult, M.S.W.
Program Chief, National Institute of Mental Health (NIMH)

2:15 TBD

2:30 Committee Business

Thomas Insel, M.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), (NIMH) and
Executive Secretary, IACC

3:30 Break

3:45 Committee Business – continued

4:00 Round Robin

5:00 Adjournment

Note: I serve as a public member to the IACC but all statements here and elsewhere are my own.


By Matt Carey

Meeting of the Interagency Autism Coordinating Committee

11 Mar

The U.S. Interagency Autism Coordinating Committee (IACC) will meet next month. People are invited to attend in person, by phone or webinar. People are also invited to submit written comments or present comments live.

Note: I serve as a public member to the IACC but all comments and opinions here and elsewhere are my own.

Here is the announcement:

Meeting of the Interagency Autism Coordinating Committee

Please join us for an IACC Full Committee meeting that will take place on Tuesday, April 8, 2014 from 9:00 a.m. to 5:00 p.m. ET at the National Institutes of Health, 31 Center Drive, Building 31, C Wing, 6th Floor, Conference Room 10, Bethesda, MD 20892. Onsite registration will begin at 8:00a.m.

Agenda: The committee will discuss committee business, agency updates and issues related to autism spectrum disorder (ASD) research and services activities.

Meeting location:
National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 10
Bethesda, MD 20892

Nearest Metro stop:
Medical Center – Red Line

In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit.

Pre-Registration:
The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Please visit the IACC website for access and information about registering.

Public Comment – Deadlines:
Notification of intent to present oral comments: Tuesday, April 1st by 5:00p.m. ET
Submission of written/electronic statement for oral comments: Wednesday, April 2nd by 5:00p.m. ET
Submission of written comments: Wednesday, April 2nd by 5:00p.m. ET

Remote Access:
The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will only be able to listen to the meeting.

Conference Call Access
USA/Canada Phone Number: 888-950-8042
Access code: 8689681

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least five days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at helpdeskiacc@gmail.com or call the IACC Technical Support Help Line at 415-652-8023.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov