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Upcoming Joint Conference Call of the IACC Subcommittee on Safety and IACC Services Subcommittee

7 Jul

As noted recently here, there is a conference call meeting for the Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and IACC Services Subcommittee on Monday. The time has been changed.

UPDATE: TIME CHANGE – Joint Meeting of Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and IACC Services Subcommittee

Due to a potentially unavoidable schedule conflict on Monday afternoon, the time of the conference call of the IACC Subcommittee on Safety and the IACC Services Subcommittee has changed to 8:00a.m. to 10:00a.m. ET on Monday, July 11, 2011 to ensure that the call will still be able to take place.  We apologize for any inconvenience that may be caused by the time change.  The purpose of the call is to discuss issues related to seclusion and restraint and autism spectrum disorder (ASD).  The Services Subcommittee will also discuss plans for the upcoming IACC Services Workshop/Town Hall that will take place on September 15-16, 2011 in Bethesda, MD.

The conference call will be accessible by the phone number and access code provided below.  Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-391-6569
Access code: 3061094

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 seven days prior to the meeting.  If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming 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 8185a
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

Is there a backup plan for the Combating Autism Reauthorization Act?

7 Jul

On May 26th, Representative Christopher Smith of New Jersey introduced House Resolution 2005: the Combating Autism Reauthorization Act of 2011 (CARA). This has some momentum, with 38 cosponsors in the house (there are another 21 sponsors in the Senate).

What I found interesting when I searched for the CARA that there are two more bills in the works on autism (both introduced on the same day as CARA): the National Autism Spectrum Disorders Initiative Act of 2011 and the Autism Spectrum Disorders Services Act of 2011.

The Text is below. They are modifications to existing laws, so being out of context they aren’t obvious as to what they are accomplishing. But we can see a few things. The National Autism Spectrum Disorders Initiative Act of 2011 is more thorough. For example, it is the one of the two bills that includes funding levels. The National Autism Spectrum Disorders Initiative Act of 2011 does not authorize money to be appropriated.

The National Autism Spectrum Disorders Initiative Act of 2011 would put coordination of autism research directly under the Secretary of Health and Human Services. The Autism Spectrum Disorders Services Act of 2011 continues the Interagency Autism Coordinating Committee, which currently coordinates autism research in the United States.

Here is bill H.R.2006, (House Resolution 2006),

H.R.2006 — National Autism Spectrum Disorders Initiative Act of 2011 (Introduced in House – IH)

HR 2006 IH

112th CONGRESS

1st Session

H. R. 2006

To establish a National Autism Spectrum Disorders Initiative , and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

May 26, 2011

Mr. SMITH of New Jersey (for himself and Mr. DOYLE) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To establish a National Autism Spectrum Disorders Initiative , 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 `National Autism Spectrum Disorders Initiative Act of 2011 ‘.

SEC. 2. ESTABLISHMENT OF THE NATIONAL AUTISM SPECTRUM DISORDERS INITIATIVE .

Part R of title III of the Public Health Service Act (42 U.S.C. 280i et seq.) is amended–

(1) by redesignating section 399E (42 U.S.C. 280i-4) as section 399FF; and

(2) by inserting after section 399DD the following:

`SEC. 399EE. ESTABLISHMENT OF THE NATIONAL AUTISM SPECTRUM DISORDERS INITIATIVE .

`(a) In General- There is established in the Office of the Secretary of Health and Human Services the National Autism Spectrum Disorders Initiative (referred to in this Act as the `Initiative’ ). The principal goal of the Initiative is to improve the lives of persons with autism spectrum disorders through research focused on prevention, treatment, services, and cures.

`(b) Duties of the Secretary Under the Initiative – The Secretary (or the Secretary’s designee) shall–

`(1) act as the primary Federal official with responsibility for overseeing all research on autism spectrum disorders conducted or supported by the National Institutes of Health;

`(2) approve the strategic plan described in section 399CC(b)(5) and be responsible for its implementation;

`(3) receive directly from the President and the Director of the Office of Management and Budget all funds available for autism spectrum disorder activities of the National Institutes of Health;

`(4) from the amounts received under paragraph (3) for the fiscal year, allocate, in consultation with the Director of the National Institutes of Health, to the agencies of the National Institutes of Health in accordance with the strategic plan all amounts available for such year for carrying out autism spectrum disorder activities;

`(5) to the extent practicable, allocate amounts under paragraph (4) not later than 30 days after the date on which the Secretary receives the amounts described under paragraph (3);

`(6) have authority to reallocate up to 3 percent of the total amount allocated under paragraph (4) as needs change and opportunities arise;

`(7) plan and evaluate research and other activities related to autism spectrum disorders conducted or supported by the agencies of the National Institutes of Health, evaluating the activities of each of such agencies and providing for the periodic reevaluation of such activities;

`(8) maintain communications with all relevant departments and agencies of the Federal Government to ensure the timely transmission of information concerning autism spectrum disorders ; and

`(9) carry out this subsection in consultation with the heads of the agencies of the National Institutes of Health, with the advisory councils of such agencies, and with the Interagency Autism Coordinating Committee.

`(c) Sunset Provision- This section shall not apply after the date that is 7 years after the date of the enactment of this section.’.

SEC. 3. ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO AUTISM SPECTRUM DISORDERS .

Section 409C of the Public Health Service Act (42 U.S.C. 284g) is amended–

(1) in subsection (a)(1), by striking `basic and clinical research’ and inserting `basic, clinical, and translational research’;

(2) in subsection (b)–

(A) in paragraph (2)–

(i) by striking `basic and clinical research’ and inserting `basic, clinical, and translational research’; and

(ii) by inserting `, building upon the recommendations set forth in the most recent strategic plan for autism spectrum disorders of the Interagency Autism Coordinating Committee established under section 399CC’ before the period at the end of the second sentence; and

(B) by adding at the end the following:

`(6) DEFINITION- In this section, the term `translational’, with respect to research, means emphasizing the development and delivery of effective new therapies to patients.’; and

(3) in subsection (c), by inserting `, biosamples relevant to environmental exposures,’ after `tissues’.

SEC. 4. CLARIFYING AMENDMENTS WITH RESPECT TO AUTISM INTERVENTION.

Section 399BB(f) of the Public Health Service Act (42 U.S.C. 280i-1(f)) is amended–

(a) by inserting `to research networks’ after `contracts’; and

(b) by striking `interventions for individuals’ and inserting `interventions to improve the physical and behavioral health and well-being of individuals’.

Here is bill H.R.2007, (House Resolution 2007), Autism Spectrum Disorders Services Act of 2011:

SEC. 2. INTERAGENCY AUTISM COORDINATING COMMITTEE.

Section 399CC of the Public Health Service Act (42 U.S.C. 280i-2) is amended–

(1) in subsection (a), by striking `within the Department of Health and Human Services’ and inserting `of Federal agencies’;

(2) in subsection (b)–

(A) in paragraph (1), by inserting `and the families of such individuals’ before the semicolon at the end;

(B) in paragraph (2)–

(i) by inserting `, evaluate, and assess’ after `monitor’; and

(ii) by inserting `and facilitate collaboration among Federal agencies regarding such activities’ before the semicolon at the end;

(C) in paragraph (3), by inserting `and other appropriate Federal Government department and agency heads’ after `Secretary’;

(D) in paragraph (4), by inserting `and other appropriate Federal Government department and agency heads’ after `Secretary’;

(E) in paragraph (5), by inserting `and services and supports for individuals with autism spectrum disorder and the families of such individuals’ after `research’; and

(F) in paragraph (6), by striking `submit to the Congress’ and inserting `submit to the President, who shall review and transmit to Congress,’;

(3) in subsection (c)–

(A) in paragraph (1) in subparagraph (D), by inserting `, the Department of Defense, the National Council on Disability, the Department of Housing and Urban Development, the Department of Justice, and the Department of Labor’ before the semicolon at the end;

(B) in paragraph (2)–

(i) in the matter preceding subparagraph (A), by striking `fewer than 6 members of the Committee, or 1/3 of the total membership of the Committee, whichever is greater,’ and inserting `less than 1/2 of the total membership of the Committee’;

(ii) in subparagraph (A), by striking `one such member shall be an individual’ and inserting `2 such members shall be individuals’;

(iii) in subparagraph (B)–

(I) by striking `one such member shall be a parent or legal guardian’ and inserting `2 such members shall be a parent or a legal guardian’; and

(II) by striking `and’ at the end;

(iv) in subparagraph (C)–

(I) by striking `one such member shall be a representative’ and inserting `2 such members shall be representatives’; and

(II) by striking the period at the end and inserting `; and’; and

(v) by adding at the end the following:

`(D) at least 2 such members shall be clinicians who treat individuals with autism spectrum disorder.’;

(4) in subsection (d) in paragraph (2), by inserting `, except that the term of any member appointed under subsection (c)(2)(C) shall expire if such member no longer represents the organization described in such subsection’ after `additional 4 year term’;

(5) in subsection (e), by striking the first sentence and inserting `In carrying out its functions, the Committee may convene workshop and conferences. The Committee shall establish a subcommittee on research on autism spectrum disorders, a subcommittee on services and supports for individuals with autism spectrum disorders and the families of such individuals, and such other subcommittees as the Committee determines appropriate. Such subcommittees shall vote separately on matters within their respective jurisdictions.’; and

(6) by adding at the end the following:

`(f) Report- Not later than 1 year after the date of enactment of the Autism Spectrum Disorders Services Act of 2011 and annually thereafter, the Comptroller General of the United States shall submit a report to Congress concerning the progress of the Federal Government in implementing the strategic plan for autism spectrum disorder research and services and supports for individuals with autism spectrum disorder and the families of such individuals.’.

SEC. 3. SERVICES FOR INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS.

Part R of title III of the Public Health Service Act (42 U.S.C. 280i et seq.) is amended–

(1) by redesignating section 399EE (relating to authorization of appropriaations) as section 399FF; and

(2) by inserting after section 399DD the following:

`SEC. 399EE. PLANNING AND DEMONSTRATION GRANT FOR SERVICES FOR CHILDREN, TRANSITIONING YOUTH, AND ADULTS.

`(a) In General- To assist selected eligible entities in providing appropriate services to children, youth with autism spectrum disorders who are transitioning from secondary education to careers or postsecondary education (referred to in this section as `transitioning youth’), adults with autism spectrum disorders, and individuals of any age with autism spectrum disorders who may be at risk due to behavioral and preventable environmental factors, such as wandering (referred to in this section as `individuals at risk’), the Secretary shall establish–

`(1) a one-time, single-year planning grant program for eligible entities; and

`(2) a multiyear service provision demonstration grant program for selected eligible entities.

`(b) Purpose of Grants- Grants shall be awarded to eligible entities to provide all or part of the funding needed to carry out programs that focus critical aspects of life for children, transitioning youth, and adults with autism spectrum disorders (including adults not eligible for developmental disability services provided by a State), such as–

`(1) postsecondary education, peer support, vocational training, self-advocacy skills, and employment;

`(2) community-based behavioral supports and interventions;

`(3) residential services, housing, and transportation;

`(4) nutrition, health and wellness, and recreational and social activities; and

`(5) personal safety for individuals at risk and the needs of individuals with autism spectrum disorders who become involved with the criminal justice system.

`(c) Eligible Entity- An eligible entity desiring to receive a grant under this section shall be a State or other public or private nonprofit organization, including a State Council on Developmental Disabilities, as defined in section 102 of the Developmental Disabilities Assistance and Bill of Rights Act of 2000.

`(d) Planning Grants-

`(1) IN GENERAL- The Secretary shall award one-time grants to eligible entities to support the planning and development of initiatives that will expand and enhance service delivery systems for children, individuals at risk, transitioning youth, and adults with autism spectrum disorders.

`(2) APPLICATION- In order to receive such a grant, an eligible entity shall–

`(A) submit an application at such time and containing such information as the Secretary may require; and

`(B) demonstrate the ability to carry out such planning grant in coordination with the applicable State Council on Developmental Disabilities and organizations representing or serving individuals with autism spectrum disorders and the families of such individuals.

`(e) Implementation Grants-

`(1) IN GENERAL- The Secretary shall award grants to eligible entities that have received a planning grant under subsection (d) to enable such entities to provide appropriate services to children, individuals at risk, transitioning youth, and adults with autism spectrum disorders.

`(2) APPLICATION- In order to receive a grant under paragraph (1), the eligible entity shall submit an application at such time and containing such information as the Secretary may require, including–

`(A) the services that the eligible entity proposes to provide and the expected outcomes for the individuals who receive such services;

`(B) the number of individuals who will be served by such grant, including an estimate of the individuals in underserved areas who will be served by such grant;

`(C) the ways in which services will be coordinated among both public and nonprofit providers of services for children, transitioning youth, and adults with disabilities, including community-based services;

`(D) where applicable, the process through which the eligible entity will distribute funds to a range of community-based or nonprofit providers of services, including local governments, and the capacity of such entity to provide such services;

`(E) the process through which the eligible entity will monitor and evaluate the outcome of activities funded through the grant, including the effect of the activities upon individuals who receive such services;

`(F) where applicable, the plans of the eligible entity to coordinate and streamline transitions from youth to adult services;

`(G) the process by which the eligible entity will ensure compliance with the integration requirement under section 302 of the Americans With Disabilities Act of 1990; and

`(H) a description of how such services may be sustained following the grant period.

`(f) Evaluation- The Secretary shall contract with a third-party organization with expertise in evaluation to evaluate such demonstration grant program and, not later than 180 days after the conclusion of the grant program under subsection (e), submit a report to the Secretary. The evaluation and report may include an analysis of whether and to what extent the services provided through the grant program described in this section resulted in improved safety, health, education, employment, and community integration outcomes or other measures, as the Secretary determines appropriate.

`(g) Administrative Expenses- Of the amounts appropriated to carry out this section, the Secretary shall set aside not more than 7 percent for administrative expenses, including the expenses related to carrying out the evaluation described in subsection (f).

`(h) Supplement, Not Supplant- Demonstration grant funds provided under this section shall supplement, not supplant, existing treatments, interventions, and services for individuals with autism spectrum disorders.

`SEC. 399EE-1. NATIONAL TECHNICAL ASSISTANCE CENTER FOR AUTISM TREATMENTS, INTERVENTIONS, AND SERVICES.

`(a) Establishment of National Technical Assistance Center for Autism Treatments, Interventions, and Services- The Secretary shall award a grant to a national nonprofit organization for the establishment and maintenance of a national technical assistance center.

`(b) Eligibility- An organization shall be eligible to receive a grant under subsection (a) if the organization–

`(1) has demonstrated knowledge and expertise in serving children with autism and adults with autism and the families of such individuals;

`(2) has demonstrated knowledge of how to translate research to practice, and present information in a way that is easily accessible and understandable to the family members of individuals with autism ;

`(3) has demonstrated capacity of training educators, health care providers, family members, and others to support the needs of individuals with autism ;

`(4) has demonstrated capacity of disseminating information throughout the United States; and

`(5) has demonstrated capacity to establish and maintain a Web site through which to disseminate information in an easily accessible manner.

`(c) Use of Funds- The national technical assistance center established under this section shall–

`(1) gather and disseminate information on evidence-based treatments, interventions, and services for children with autism and adults with autism , including best practices in delivering such treatments, interventions, and services, and make this information available to State agencies with responsibilities under section 399BB(c)(2), local communities, and individuals;

`(2) gather and disseminate information on activities of the Interagency Autism Coordinating Committee established under section 399CC;

`(3) provide analysis of activities funded under the Autism Spectrum Disorders Services Act of 2011, including–

`(A) the effectiveness of State and community-based models for delivering comprehensive services to individuals with autism ;

`(B) identification and dissemination of best practices emerging from States, community-based organizations, nonprofit providers, and local governments receiving demonstration grants under this subpart;

`(C) the State-by-State availability of, and gaps in, services for individuals with autism spectrum disorders, including information on services or service gaps in rural areas; and

`(D) levels of funding and funding sources of services for individuals with autism spectrum disorders in States;

`(4) provide technical assistance to States and organizations funded under this part;

`(5) gather and disseminate information about autism spectrum disorders;

`(6) establish and maintain a Web site through which to disseminate the information gathered under this section in an easily accessible manner;

`(7) establish partnerships with advocacy organizations to disseminate accurate information on education, service-provision, and support options and provide assistance in navigating service-provision systems; and

`(8) gather and disseminate other information as determined appropriate by the Secretary.’.

SEC. 4. AUTHORIZATION OF APPROPRIATIONS.

Section 399FF of the Public Health Service Act (42 U.S.C. 240i-4), as redesignated by section 3(1), is amended by adding at the end the following:

`(d) Planning and Demonstration Grant for Services for Children, Transitioning Youth, and Adults- To carry out section 399EE, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $80,000,000.

`(2) For fiscal year 2013, $90,000.000.

`(3) For fiscal year 2014, $100,000,000.

`(4) For fiscal year 2015, $110,000,000.

`(5) For fiscal year 2016, $120,000,000.

`(e) National Technical Assistance Center for Autism Treatments, Interventions, and Services- To carry out section 399EE-1, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $2,000,000.

`(2) For fiscal year 2013, $2,100,000.

`(3) For fiscal year 2014, $2,200,000.

`(4) For fiscal year 2015, $2,300,000.

`(5) For fiscal year 2016, $2,400,000.’.

SEC. 5. GAO STUDY ON SERVICE PROVISION AND FINANCING.

Not later than 1 year after the date of enactment of this Act, the Comptroller General of the United States shall release a report that examines the following issues:

(1) The ways in which autism services and treatments are currently financed in the United States.

(2) Current policies for public and private health insurance coverage of autism treatments, interventions, and services.

(3) Geographic and regional disparities in provision of services across the lifespan of individuals with autism , levels of community-based versus institutional services, and coverage for such services.

(4) Ways in which to improve financing of autism treatments, interventions, and services, so as to ensure a minimum level of coverage across the United States.

(5) Gaps in financing and availability of services for adults on the autism spectrum, focusing particularly on the needs of adults not eligible for developmental disability services provided by the State.

(6) Areas of need to improve the quality of services available to individuals on the autism spectrum in cross-disability contexts, such as vocational rehabilitation and centers for independent living.

(7) Findings from replicable studies that indicate an increased risk of mortality for individuals with autism due to preventable circumstances such as wandering, exposure, drowning, and untreated seizure disorders.

SEC. 6. EMERGING NEEDS PROTECTION AND ADVOCACY PROGRAM FOR INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS.

(a) Initiatives on Autism Spectrum Disorders- Title I of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.) is amended by adding at the end the following:

`Subpart F–Initiatives on Autism Spectrum Disorders

`SEC. 171. EMERGING NEEDS PROTECTION AND ADVOCACY PROGRAM.

`(a) In General- The Secretary shall make grants to protection and advocacy systems for the purpose of enabling such systems to address the needs of individuals with autism spectrum disorders.

`(b) Services Provided- Services provided under this section may include the provision of–

`(1) information, referrals, and advice;

`(2) individual and family advocacy;

`(3) legal representation;

`(4) specific assistance in self-advocacy and assistance in capacity building for organizations that advocate on behalf of individuals with autism spectrum disorder; or

`(5) training to individuals with autism spectrum disorders, the families of such individuals, or advocates for individuals with autism spectrum disorders.

`(c) Eligibility- To be eligible to receive a grant under this section, a protection and advocacy system shall–

`(1) have the right and authority to investigate incidents of abuse and neglect of youth and adults with autism spectrum disorders if the incidents are reported to the protection and advocacy system or if there is probable cause to believe that the incidents occurred;

`(2) have the right and authority to pursue administrative, legal, and other appropriate remedies and approaches to ensure the protection of youth and adults with autism spectrum disorders; and

`(3) have the rights and authorities, including access authority, described in section 143 of this Act and section 105 of the Protection and Advocacy for Individuals with Mental Illness Act.

`(d) Grant Amounts- The Secretary shall make grants under this section during each fiscal year beginning on October 1 to protection and advocacy systems as follows:

`(1) APPROPRIATIONS LESS THAN $6,700,000- With respect to any fiscal year for which the amount appropriated under subsection (i) is less than $6,700,000, the Secretary shall make grants from such amount to protection and advocacy systems that apply for a grant under this section in the amounts described in paragraph (3).

`(2) APPROPRIATIONS OF $6,700,000 OR MORE-

`(A) IN GENERAL- With respect to any fiscal year for which the amount appropriated under subsection (i) is $6,700,000 or more, the Secretary shall make grants from such amount to protection and advocacy systems under this section in accordance with subparagraph (B).

`(B) AMOUNT OF GRANT- Subject to paragraph (3), the amount of a grant to a protection and advocacy system under subparagraph (A) shall be equal to an amount bearing the same ratio to the total amount appropriated for the fiscal year involved as the population of the State, Territory, or Consortium in which the grantee is located bears to the cumulative population of all States, Territories, and the Consortium that receive such grants.

`(3) MINIMUM AMOUNTS-

`(A) IN GENERAL- The amount of a grant under this section shall not be less than–

`(i) in the case of a protection and advocacy system located in a State, $120,000; and

`(ii) in the case of a protection and advocacy system located in a Territory or Consortium, $60,000.

`(B) ADJUSTMENTS TO MINIMUM AMOUNTS-

`(i) IN GENERAL- In the case of a fiscal year (referred to in this subparagraph as the `current fiscal year’) in which the total amount appropriated under subsection (i) is $10,000,000 or more, and such amount appropriated exceeds the total amount appropriated under such subsection for the preceding fiscal year, the Secretary shall increase the minimum grant amounts under subparagraph (A) by a percentage equal to the percentage by which the total amount appropriated for the current fiscal year exceeds the amount appropriated for the previous fiscal year.

`(ii) EXCEPTION- Clause (i) shall not apply in the case that the total amount appropriated for the current fiscal year is less than the amount appropriated for any fiscal year in the period between the date of enactment of the Combating Autism Reauthorization Act of 2011 and such current fiscal year.

`(C) APPLICABILITY OF ADJUSTMENTS- An increase in the minimum grant amounts under subparagraph (B) shall be effective for each subsequent fiscal year.

`(4) LOWER APPROPRIATION YEARS- In the case of a fiscal year for which the amount appropriated under subsection (i) is insufficient to satisfy the requirements of paragraph (3) for each protection and advocacy system that applies for a grant under this section, the Secretary shall award grants in the amounts described in paragraph (3) to as many protection and advocacy systems as the amount appropriated allows.

`(5) DEFINITIONS- For purposes of this subsection and subsection (e):

`(A) CONSORTIUM- The term `Consortium’ means an American Indian Consortium, as defined in section 102(1).

`(B) STATE- The term `State’ means each of the 50 States of the United States, the District of Columbia, and the Commonwealth of Puerto Rico.

`(C) TERRITORY- The term `Territory’ means American Samoa, the Commonwealth of the Northern Mariana Islands, Guam, and the United States Virgin Islands.

`(e) Carryover- Any amount paid to a protection and advocacy system that serves a Consortium, State, or Territory for a fiscal year under this section that remains unobligated at the end of such fiscal year shall remain available to such system for obligation during the next fiscal year for the purposes for which such amount was originally provided.

`(f) Direct Payment- Notwithstanding any other provision of law, the Secretary shall pay directly to any protection and advocacy system that complies with the provisions of this section, the total amount of the grant for such system, unless the system provides otherwise for such payment.

`(g) Administrative, Reporting, and Oversight Requirements- To the extent practicable, reporting, monitoring, program financing, and other administrative and oversight requirements established by the Secretary under this section shall be consistent with the other administrative, reporting, and oversight requirements for a protection and advocacy system.

`(h) Annual Report- Each protection and advocacy system that receives a payment under this section shall submit an annual report to the Secretary concerning the services provided to individuals with autism spectrum disorders by such system.

`(i) Authorization of Appropriations- To carry out this section, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $8,000,000.

`(2) For fiscal year 2013, $9,000,000.

`(3) For fiscal year 2014, $10,000,000.

`(4) For fiscal year 2015, $11,000,000.

`(5) For fiscal year 2016, $12,000,000.

`(j) Definition- In this section, the term `protection and advocacy system’ means a protection and advocacy system established under section 143.

`(k) Technical Assistance-

`(1) APPROPRIATIONS OF LESS THAN $6,750,000- For a fiscal year for which the amount appropriated to carry out this section is less than $6,750,000, the Secretary shall set aside the greater of–

`(A) 1 percent of the funds appropriated; or

`(B) $25,000, to make a grant to a national organization with experience in providing training and technical assistance to protection and advocacy systems to provide such training and technical assistance.

`(2) APPROPRIATIONS OF NOT LESS THAN $6,750,000- For a fiscal year for which the amount appropriated to carry out this section is not less than $6,750,000, the Secretary shall set aside 2 percent of the funds appropriated to make a grant to a national organization with experience in providing training and technical assistance to protection and advocacy systems to provide such training and technical assistance.

Autism Talk TV – Fly Away – Interview with Janet Grillo and Ashley Rickards

6 Jul

Alex Plank, founder of WrongPlanet and filmmaker, interviewed Janet Grillo and Ashley Rickards of the movie Fly Away. As you will hear, Janet Grillo is the parent of autistic child. The interview is on the WrongPlanet YouTube Channel, and is embedded below:

I have not had the chance to see Fly Away yet, and for those of you like me, here is the trailer for the movie from the Fly Away website:

Fly Away Trailer from Fly Away on Vimeo.

Autism Spring

5 Jul

Autism Spring is a recent blog post by Dr. Thomas Insel. Dr. Insel is the director of the National Institute of Mental Health (NIMH) and the chair of the Interagency Autism Coordinating Committee.

As a rule, I try to not copy other articles in their entirety. As a taxpayer, I feel that work by the government is in a different category, and so I present the entire article below.

I find it very interesting to read what Dr. Insel finds important in autism research. At the same time, I think it is important to present this without much in the way of commentary (until whatever discussion unfolds, of course).

Looking back over NIMH related events these past few months, one might wonder if this has been Autism Spring. It has certainly been a busy season for autism spectrum disorder (ASD): a White House meeting, unprecedented press coverage, and the largest International Meeting for Autism Research (IMFAR) to date. But perhaps most exciting has been the early scientific harvest evident in a series of high-profile papers published over the past two months. Some of these discoveries with autism have implications for mental disorders like schizophrenia and mood disorders, which increasingly are being addressed as neurodevelopmental disorders.

While the new findings range from epidemiology to new diagnostic tests, here I will focus on new insights into the molecular basis of autism. Three studies, written up in the June issue of Neuron, based their findings on data from the Simons Simplex Collection.1,2,3 The Simons Foundation funded the collection of careful clinical descriptions and DNA from over 1,000 children with autism who were the only affected member of their families; such families are referred to as simplex, in contrast to multiplex families, which have multiple affected members. The new reports look specifically at copy number variations (CNVs). These are rare, structural changes in the genome leading to a deletion or duplication of a segment of DNA. Many of these are de novo, meaning that the duplication or deletion is not found in the genome of either parent but develop in the DNA of germ cells (egg or sperm) over the life of one parent. Small de novo changes in DNA sequence, which occur in all of us, demonstrate that effects can be genetic without necessarily being inherited. And, of course, these germ cell changes may be the result of environmental factors, increasing with parental age.

The results are both intriguing and frustrating. Intriguing, in that children with ASD were found to have many more CNVs. These CNVs were more likely to be larger and more frequently involved specific genes than those found in unaffected siblings. But only 1 in 38 affected children had a recurrent CNV, meaning a CNV that appeared in any of the other children in the study. Of these recurrent CNVs, six genomic regions were discovered to be associated with ASD, including four duplications of the chromosome 7q11.23 region. This region is deleted in Williams-Buren syndrome, a disorder with hyper-social, hyper-verbal behavior that, in some ways, appears as the inverse of the autism phenotype. Unfortunately, the papers did not describe whether these recurrent CNVs were associated with distinct clinical characteristics.

The frustration comes from the relative rarity and complexity of these de novo CNVs. In two separate studies of this same sample using different techniques, only about 8 percent of ASD children in simplex families had CNVs. Add this number to the 8 percent with a mutation known to cause autism, such as Fragile X or tuberous sclerosis, and that still leaves more than 80 percent of ASD children with no evident genomic cause for their disorder. Traditional estimates of the heritability of ASD range as high as 90 percent. It is quite possible that these heritability estimates were too high, but even if the heritability were less, as Scharff and Zoghbi noted in an essay that accompanied these three Neuron papers, “the results are humbling.”4

Of course, there are more genomic risk factors to be found, given that the CNVs identified in these studies are large (100,000 bases or greater). As the technology for genomic research improves, smaller CNVs are likely to be identified. These papers estimate that there may be 200-300 CNVs in the genome contributing to ASD. The next step in this journey will involve sequencing all the coding regions of the genome, no doubt with even more variations emerging.

But there are more questions than answers in these projections. Many CNVs are incidental (2 percent occur in unaffected siblings), many different genes may be affected by the known CNVs, and the biological significance of any of these mutations remains to be determined. Indeed, an independent paper looking at the interaction of proteins from genes implicated in ASD found networks centered on two synaptic proteins: Shank 3 and PSD95.5 A separate analysis of the genes thought to be implicated in ASD identified a network that included genes involved in synapse formation, axon targeting, and neuronal motility.6 All of this suggests that, from a genomic perspective, autism is a synaptic disease.

Why is this important? If nothing else, these humbling results beg for more exploration of the brain. And one of the most exciting studies , just out, reports that RNA expression patterns in post-mortem brains yield some surprising clues. RNA is the key intermediary for translating DNA into protein. Patterns of RNA expression define which proteins will be expressed, determining the function of each cell. In ASD brains, the expected differences in expression between different regions of the brain are less distinct, as if mature cortical patterns have not developed. While the differences in expression are complex, they converge around a few key pathways and may reflect differences in RNA splicing. For instance, with brain maturation, genes are spliced in different regions to yield different fragments of RNA and different protein products. We need much more study of this process in ASD, but this initial project of frontal and temporal cortex suggests that whatever the DNA variations in ASD may be, the RNA fragments are strikingly abnormal.

If the CNVs discovered in genomic DNA reflect a fundamental genomic instability in ASD, could there be somatic mutations (mutations found in neurons but not in blood cells) in ASD brains? Perhaps the biology of cancer, with mutations in oncogenes and tumor suppressor genes found only in the tumor, will be a useful model for the biology of ASD, with mutations found only in the cortex.

Oliver Wendell Holmes once said, “I wouldn’t give a fig for the simplicity on this side of complexity; I’d give my right arm for the simplicity on the far side of complexity.” We are, unfortunately, not near the far side of complexity of autism. These recent studies raise questions about the limits of genetics, even with the enormous power of our current techniques. Genetic signals will be complex and may not converge as we would hope around a simple developmental mechanism or pathway. Post-mortem brain analysis may be highly informative, but we have little tissue from ASD children, and comparisons with age-matched tissue continue to be a challenge.

The great uncharted territory of environmental factors remains, which might begin to explain the infrequent mutation rate and apparent increase in autism prevalence. Here, we are stymied by a different kind of complexity. Most evidence points to environmental factors acting in the second trimester, two or more years before a diagnosis of ASD. Several studies funded by NIH are looking for differences in the gestational environment of children later diagnosed with ASD. The answers — and there will be answers — will no doubt merge genetic risk and environmental exposure to help us reach the far side of the complexity of ASD.

1) Levy D, Ronemus M, Yamrom B, Lee YH, Leotta A, Kendall J, Marks S, Lakshmi B, Pai D, Ye K, Buja A, Krieger A, Yoon S, Troge J, Rodgers L, Iossifov I, Wigler M. Rare de novo and transmitted copy-number variation in autistic spectrum disorders. Neuron. 2011 Jun 9;70(5):886-97. PubMed PMID: 21658582.
2) Sanders SJ, Ercan-Sencicek AG, Hus V, Luo R, Murtha MT, Moreno-De-Luca D, Chu SH, Moreau MP, Gupta AR, Thomson SA, Mason CE, Bilguvar K, Celestino-Soper PB, Choi M, Crawford EL, Davis L, Davis Wright NR, Dhodapkar RM, Dicola M, Dilullo NM, Fernandez TV, Fielding-Singh V, Fishman DO, Frahm S, Garagaloyan R, Goh GS, Kammela S, Klei L, Lowe JK, Lund SC, McGrew AD, Meyer KA, Moffat WJ, Murdoch JD, O’Roak BJ, Ober GT, Pottenger RS, Raubeson MJ, Song Y, Wang Q, Yaspan BL, Yu TW, Yurkiewicz IR, Beaudet AL, Cantor RM, Curland M, Grice DE, Günel M, Lifton RP, Mane SM, Martin DM, Shaw CA, Sheldon M, Tischfield JA, Walsh CA, Morrow EM, Ledbetter DH, Fombonne E, Lord C, Martin CL, Brooks AI, Sutcliffe JS, Cook EH Jr, Geschwind D, Roeder K, Devlin B, State MW. Multiple Recurrent De Novo CNVs, Including Duplications of the 7q11.23 Williams Syndrome Region, Are Strongly Associated with Autism. Neuron. 2011 Jun 9;70(5):863-85. PubMed PMID: 21658581.
3) Gilman SR, Iossifov I, Levy D, Ronemus M, Wigler M, Vitkup D. Rare de novo variants associated with autism implicate a large functional network of genes involved in formation and function of synapses. Neuron. 2011 Jun 9;70(5):898-907. PubMed PMID: 21658583.
4) Schaaf CP, Zoghbi HY. Solving the autism puzzle a few pieces at a time. Neuron. 2011 Jun 9;70(5):806-8. PubMed PMID: 21658575.
5) Sakai Y, Shaw CA, Dawson BC, Dugas DV, Al-Mohtaseb Z, Hill DE, Zoghbi HY. Protein interactome reveals converging molecular pathways among autism disorders. Sci Transl Med. 2011 Jun 8;3(86):86ra49. PubMed PMID: 21653829.
6) Voineagu I, Wang X, Johnston P, Lowe JK, Tian Y, Horvath S, Mill J, Cantor RM, Blencowe MJ, Geschwind DH. Transcriptomic analysis of autistic brain reveals convergent molecular pathology. Nature. 2011 Jun 16;474: 380-86. PMID: 21614001.

Upcoming Joint Conference Call of the IACC Subcommittee on Safety and IACC Services Subcommittee

3 Jul

The Interagency Autism Coordinating Committee will hold a conference call for the Safety and Services subcommittes on July 11. Should the Combating Autism Reauthorization Act (CARA) not pass (or another bill to continue the IACC), this will likely be the final IACC meeting.

The conference call is only 2 hours. It is worthwhile, in my experience, to listen in on what subjects are being discussed and how priorities are being set. Safety and services subcommittees will likely discuss topics such as wandering, which has been a recent focus of the IACC and the subcommittees.

Here is the announcement:

Joint Meeting of Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and IACC Services Subcommittee

Please join us for a conference call of the IACC Subcommittee on Safety and the IACC Services Subcommittee on Monday, July 11, 2011 from 2:00 p.m. to 4:00 p.m. ET to discuss issues related to seclusion and restraint and autism spectrum disorder (ASD).  The Services Subcommittee will also discuss plans for the upcoming IACC Services Workshop/Town Hall that will take place on September 15-16, 2011 in Bethesda, MD.

The conference call will be accessible by the phone number and access code provided below.  Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-391-6569
Access code: 3061094

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 seven days prior to the meeting.  If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming 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 8185a
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

Upcoming IACC Full Committee Meeting – July 19, 2011

2 Jul

The Interagency Autism Coordinating Committee will meet again on July 19. Should the Combating Autism Reauthorization Act (CARA) not pass (or another bill to continue the IACC), this will likely be the final IACC meeting.

The meetings are long, but I have found them to be very worthwhile to listen in or review later (when audio/video is posted on the NIH website). It is interesting to see how the process works and what topics are discussed and prioritized.

Here is the announcement:

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Please join us for an IACC Full Committee meeting that will take place on Tuesday, July 19, 2011 from 10:00 a.m. to 5:00 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The IACC meeting will feature invited speakers and discussion of committee business items including the 2011 IACC Summary of Advances, subcommittee activities related to seclusion and restraint, and an update on plans for the Fall 2011 IACC Services Workshop.

Meeting location:
The Bethesda Marriott – Map and Directions

5151 Pooks Hill Road
Bethesda, MD  20814

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.

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 be able to listen to the meeting, but will not be heard.
Conference Call Access
USA/Canada Phone Number: 800-369-1814
Access code: 7791752

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 seven days prior to the meeting.  If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming 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 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Mother walks free from court after strangling autistic son with belt

2 Jul

Perhaps someone can explain this case and this decision to me: Mother walks free from court after strangling autistic son with belt.

Yvonne Freaney, 50, admitted she killed her son Glen, 11, with a coat belt in an airport hotel room.

Freaney told police she killed Glen so “no one could point fingers at him” when he was in heaven.

Mother-of-four Freaney also tried to kill herself but botched her attempts to slash her wrists – and was found alive by ambulance crews.

She was cleared of murder but admitted manslaughter by diminished responsibility. Judge Mr Justice Wyn Williams allowed her to walk free with a supervision order.

John Charles Rees, defending, said: “She was undoubtably a loving mother to all her children and killed Glen out of love not malice.

The mother is described as having a personality disorder and having suffered much abuse. There has to be more.

And why does the news story go into such detail about the child’s disability. Does that have anything to do with the murder? After all the description of how significant were the disabilities, the father was quoted: “The tragedy of his death still causes us great pain. He was a wonderful friendly boy and very much loved by us all and we miss him deeply.”

Grand Jury says special education underfunded

1 Jul

This sounded like it could be a good news story. Grand Jury says special education underfunded is a news story out of Ridgecrest California. (If you aren’t familiar with the geography, Ridgecrest is in the southern part of the Owens River valley north of LA in what would be a desert/rural area except for China Lake military base and Edwards Air Force Base).

I was hoping for something in the story pointing out that the amount of money going into Special Education was too low. Not that I want to hear that our good friends in Ridgecrest but, hey, I assume they aren’t getting the funding they need in these tough times.

The story starts out with the cost of Special Ed in the district:

The Sierra Sands Unified School District spent nearly $4.14 million for special education, and nearly $421,000 came from the district’s general fund, according to a just-released Kern County Grand Jury report. The district also spent nearly $11,000 for transportation.

They then make a statement I see all too rarely:

The report said the children of California are entitled to a free and appropriate education by court and legislative mandate.

They got it right. The children of California are entitled to a free and appropriate public education (FAPE). Not “the special education students” as is all too often the focus. No, all children are entitled to FAPE.

We just don’t hear people complaining about the mandate to provide FAPE to non special ed students. And this is where the story starts down that path:

“Like many mandates, the mandating authorities do not fully fund the mandated services,” the report stated. “In 2010-11, the Kern County Grand Jury studied all of the school districts in Kern County to determine costs above and beyond the funds that come to them from the state and federal governments for special education.”

Guess what. The districts pay more for regular students than they get from state and federal government allotments, too. Heck, from what I’ve seen, the state and federal governments don’t live up to their commitments to the mainstream population either, leaving the local governments to backfill.

The term “unfunded mandates” is used a lot. In some ways, it might be better if the IDEA hadn’t promised any money to the local school districts. That way the focus would be on the term “mandated”, not “unfunded”. Then we could ask a simple question: why does the federal government have to mandate that special education students receive an appropriate education? Shouldn’t it be just assumed that all children have a right to an appropriate education? Why do we even question this for special ed students?

You can read the rest of the story. It’s short. But again, I have to ask, why do we have to mandate an appropriate education for special education students? Why single them out? Everyone deserves an appropriate education.

Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care

29 Jun

With apologies for opening the subject of the Amish and autism once again, a recent paper in the journal Pediatrics explores vaccination and the Amish: Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care. Seth Mnookin has already discussed this at The Panic Virus at PLoS blogs in Anecdotal Amish-don’t-vaccinate claims disproved by fact-based study.

What is worrisome here is the fact that the nderimmunization amongst the Amish is resulting from parental fears. In a very different study from 2001, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, most Amish parents who chose to not vaccinate were citing availability and convenience rather than fear as the reason.

To repeat–in 10 years the reasons for non-vaccinating amongst the Amish have changed from convenience to fear. We can’t say exactly why, but it seems quite plausible that the focus on autism, vaccines and the Amish could have played a role.

Given that the “Amish Anomaly” notion seems destined to linger on, I have written up another summary of the history and the facts of the story.

Dan Olmsted, now the owner of the Age of Autism, was once an editor for UPI. It was during his UPI time that he took on the autism/vaccine question that has since dominated his professional life. Back in 2005 he ran a series of stories which investigated the proposed link between autism and vaccines and, in specific, mercury. It was right around the time that the David Kirby/Lyn Redwood book “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy.” was published. This was likely the high water mark for the public’s acceptance of the vaccines-causation idea.

One of the ideas that Mr. Olmsted explored was that of the Amish. He started with the belief that they don’t vaccinate and set out to investigate whether this correlated with a lower autism prevalence. The idea of the Amish being a largely unvaccinated population was set out years earlier. David Kirby describes in Evidence of Harm how Lyn Redwood of SafeMinds discussed this in a presentation she made to congress in the year 2000.

Mr. Olmsted described his investigation starting in a piece, The Age of Autism: Mercury and the Amish . There was plenty of data even then which Mr. Olmsted could have considered which went against his hypothesis. Since then even more data has mounted against the idea.

And, yet, it persists. Often the “Amish don’t vaccinate and they don’t have autism” story pops up in internet discussions following news stories. Books have incorporated the idea. Of course it ends up in alternative medicine books on autism such as Kenneth Bock’s “Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies”. The idea can be found in other boos as well, including “Timeless Secrets of Health and Rejuvenation” (2007) and “Cry for Health: Health: the Casualty of Modern Times” (2010). Again, this is a reason to revisit the debunking of this myth. The myth lives on, even in the face of facts.

In his 2005 UPI article, Mr. Olmsted started out with the assumption that the Amish don’t vaccinate. He set out to see if he could find autistics amongst the Amish, but didn’t look into the vaccination question with any depth:

So I turned to the 22,000 Amish in Lancaster County, Pa. I didn’t expect to find many, if any, vaccinated Amish: they have a religious exemption from the otherwise mandatory U.S. vaccination schedule.

As is well known now, the Amish do not have a religious exemption from the vaccine schedule. They do not have a religious prohibition against vaccination.

This was something Mr. Olmsted could easily have confirmed at the time. He might have checked the 1993 book Amish Society by John Andrew Hostetler (1993), in which he would have found the following statements about medicine:

“Some are more reluctant than others to accept immunization, but it is rare that an Amish person will cite a biblical text to object to a demonstrated medical need…” ….””If the Amish are slow to accept preventive measures, it doesn’t mean they religiously opposed to them…”

He might have made more than a cursory effort to contact people at the Clinic for Special Children in Strasburg, Pennsylvania. The Clinic, aside from serving special needs children (including autistics) runs vaccine clinics and has for some many years. In a piece explaining Mr. Olmsted’s failures, Mark Blaxill (also of the Age of Autism) explained that the Clinic did not return Mr. Olmsted’s phone call. No mention is given why Mr. Olmsted didn’t go to the clinic in his visits to Lancaster County

Had Mr. Olmsted done so, he would have known that this statement, again from his 2005 piece, was incorrect when he relied on a source who claimed a very low immunization rate:

That mother said a minority of younger Amish have begun getting their children vaccinated, though a local doctor who has treated thousands of Amish said the rate is still less than 1 percent.

He also made a misleading statement:

When German measles broke out among Amish in Pennsylvania in 1991, the CDC reported that just one of 51 pregnant women they studied had ever been vaccinated against it.

What is left vague in this statement was the fact that the 51 pregnant women were those who contracted German measles. Not surprising that those infected were largely unvaccinated. This doesn’t tell us what fraction of the whole population were vaccinated though, and is quite misleading.

One might wonder why Mr. Olmsted was not aware that the Amish participated in the eradication of Polio. Conversely, he might have questioned how polio was eradicated if the Amish did not vaccinate. Here is a March of Dimes photo from a 1959 vaccine clinic:


(from March of Dimes By David W. Rose, 2003)

An article available to Mr. Olmsted at the time of his 2005 article, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, discussed the reasons why Amish parents did not vaccinate their children. While some did cite “religious or philosophical objections”, the majority said they would vaccinate if “vaccination were offered locally”:

Among Amish parents who did not vaccinate their children, only 25% (13 of 51) identified either religious or philosophical objections as a factor; 51% (26 of 51) reported that vaccinating was not a priority compared with other activities of daily life. Seventy-three percent (36 of 49) would vaccinate their children if vaccination were offered locally.

Since Mr. Olmsted’s original series, more data has come in refuting the “Amish Anomaly”. In 2006, a paper was published: Vaccination usage among an old-order Amish community in Illinois. Here is the abstract:

The Old-Order Amish have low rates of vaccination and are at increased risk for vaccine-preventable diseases. A written survey was mailed to all Amish households in the largest Amish community in Illinois inquiring about their vaccination status and that of their children. In this survey, the Amish do not universally reject vaccines, adequate vaccination coverage in Amish communities can be achieved, and Amish objections to vaccines might not be for religious reasons.

It is clear that the Amish do vaccinate and that it would have been simple for Mr. Olmsted to find accurate information about this at the time. It was certainly more difficult for Mr. Olmsted to ascertain what the prevalence of autism might be amongst the Amish. He made the assertion: ““there are only a few of them [autistic Amish] in the United States”.

Of the “few” Amish autistics Mr. Olmsted could find, six were being treated by Lawrence Leichtman. The children were unvaccinated but the doctor who reported them to Mr. Olmsted attributed their autism to high mercury levels. This is not surprising as Dr. Leichtman was one of the early alt-med practitioners working in autism, being part of the secretin fad of the 1990’s. One wonders if the “elevated mercury” levels in these children would stand up to tests performed by qualified medical toxicologists.

Another six autistic Amish, nearly under Mr. Olmsted’s nose at the time of his article, were being treated by the Clinic for Special Children in Lancaster, PA. Six children who had PDD or Autism were at that time being treated and written up for a study in the New England Journal of Medicine. They were missed by Mr. Olmsted. He has since argued that these children are syndromic and, thus, somehow not as relevant to his story. Those arguments aside, this was a clear miss for Mr. Olmsted.

In 2010, a study was presented at IMFAR: Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

A preliminary number of 1 in 271 is a far cry from “little” or no autism amongst the Amish. Given the limitations of working within a community like the Amish, it is surprisingly close to the 1 in 100 often cited as the autism prevalence estimate for the general U.S. population. The study was being prepared for submission when I checked with the lead author last fall. It will be interesting to see what the final number is obtained for the prevalence.

The IMFAR abstract was available, I believe, before Dan Olmsted’s book, The Age of Autism, went to press. Instead of including this information, he chose to paint autism as rare amongst the Amish using quotes he obtained in 2005 and unsupported statements like, “the most aggressive possible count of autistic Amish comes to fewer than 20 cases, which would give us a rate of no more than 1 in 10,000.” It seems unlikely, given the low sales figures, that The Age of Autism will be reprinted. If that should happen, I wonder if Mr. Olmsted will correct this misinformation. The facts are clearly against him. Certainly, his review of internet sources and cursory tour of Lancaster County hardly counts as “aggressive”.

The “Amish don’t vaccinate and don’t have autism” idea was never very well supported. Now, with more data in, it is just plain wrong. It would be a good and honorable thing for Mr. Olmsted himself to make this clear. Good. Honorable. And not going to happen.

Early Diagnoses of Autism Spectrum Disorders in Massachusetts Birth Cohorts, 2001–2005

28 Jun

More kids are being diagnosed autistic before age 3, at least if data from Massachusetts are generalizable. Early Diagnoses of Autism Spectrum Disorders in Massachusetts Birth Cohorts, 2001–2005 is a study in the journal Pediatrics. Of course the question will be posed: is this due to a shift to earlier ages of diagnosis, a true increase in the number of autistic children or a combination of the two.

Here is the abstract:

OBJECTIVE: We examined trends in autism spectrum disorder diagnoses by age 36 months (early diagnoses) and identified characteristics associated with early diagnoses.

METHODS: Massachusetts birth certificate and early-intervention program data were linked to identify infants born between 2001 and 2005 who were enrolled in early intervention and receiving autism-related services before age 36 months (through December 31, 2008). Trends in early autism spectrum disorders were examined using Cochran-Armitage trend tests. ?2 Statistics were used to compare distributions of selected characteristics for children with and without autism spectrum disorders. Multivariate logistic regression analyses were conducted to identify independent predictors of early diagnoses.

RESULTS: A total of 3013 children (77.5 per 10 000 study population births) were enrolled in early intervention for autism spectrum disorder by age 36 months. Autism spectrum disorder incidence increased from 56 per 10 000 infants among the 2001 birth cohort to 93 per 10 000 infants in 2005. Infants of mothers younger than 24 years of age, whose primary language was not English or who were foreign-born had lower odds of an early autism spectrum disorder diagnosis. Maternal age older than 30 years was associated with increased odds of an early autism spectrum disorder diagnosis. Odds of early autism spectrum disorders were 4.5 (95% confidence interval: 4.1–5.0) times higher for boys than girls.

CONCLUSIONS: Early autism spectrum disorder diagnoses are increasing in Massachusetts, reflecting the national trend observed among older children. Linkage of early-intervention program data with population-based vital statistics is valuable for monitoring autism spectrum disorder trends and planning developmental and educational service needs.

There is a lower “risk” for children of younger mothers and for children whose mothers do not use English as a primary language. This is consistent with many studies showing lower prevalence rates amongst disadvantaged groups.

The study above was interesting to me in that another study (which I can’t find as of yet on the Pediatrics website, but is in the news) has come out which shows Many Pediatricians Aren’t Testing Tots for Developmental Delays. According to the news story about the study,

MONDAY, June 27 (HealthDay News) — Although there’s been some improvement in the number of pediatricians checking toddlers for developmental delays, more than half still don’t routinely do so, a new study finds.

In 2002, just 23 percent of pediatricians reported always or almost always using one or more standardized developmental screening tools for infants and toddlers up to 35 months of age. By 2009, that number had risen to just under 48 percent, reported the study.

Pediatricians are doing more formal screening for developmental delays. This should push the average age of diagnoses even lower. But even as recently as 2009, only about half of pediatricians were doing these evaluations.

But, if there is any constant to the world of autism research news, it is that reports conflict. Just a few weeks ago, there was a bunch of stories about another Pediatrics study. For example: Not enough evidence for routine screening for autism, Canadian researchers say

Why not screen for autism routinely? Here’s a section of that story:

He expressed concern about the impact on parents and children if there is a false positive or false negative for autism spectrum disorder. The neurodevelopmental disorder has symptoms that can include differences in social and communication skills, motor skills and sometimes intellectual abilities.

“And with any test there is always a risk that you assume that the test will say you have autism when in fact you don’t have autism.”

Gorter is also quick to say that parents who have any concerns about their child’s functioning should seek help, and “if they do have a diagnosis of autism, to be on the wait list and get the services.”

“If a child is healthy, there are no parental concerns, is then screening better than not screening? That is the question.”

Well, this is one of those questions where I have an opinion. Yes, it is good to screen. I’ve dealt with both false positives and false negatives. Yes, both are difficult (to put it mildly). Leave aside the questions of how important getting early services may be: I think they are valuable. Also, over time I’ve read many accounts of parents being disillusioned by doctors who missed their children’s autism. This is a factor which I believe plays a significant role in much of what goes wrong in the autism parent communities. Pediatricians need to keep the trust of the parents, and early diagnosis is something which can go a long way towards achieving that goal.

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