Advancement in Pediatric Autism Research Act (S 512) | March 2, 1999 #AutisticHistory #StopBigAutism


[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]


S 512 IS

106th CONGRESS

1st Session

S. 512

To amend the Public Health Service Act to provide for the expansion, intensification, and coordination of the activities of the Department of Health and Human Services with respect to research on autism.

IN THE SENATE OF THE UNITED STATES

March 2, 1999

Mr. GORTON (for himself, Mrs. FEINSTEIN, Mr. LAUTENBERG, Mr. TORRICELLI, Mr. LIEBERMAN, and Mr. EDWARDS) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions

A BILL

To amend the Public Health Service Act to provide for the expansion, intensification, and coordination of the activities of the Department of Health and Human Services with respect to research on autism.

  • 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 `Advancement in Pediatric Autism Research Act’.

SEC. 2. FINDINGS.

  • The Congress finds as follows:
  • (1) Infantile autism and autism spectrum disorders are biologically-based neurodevelopmental diseases that cause severe impairments in language and communication and generally manifest in young children sometime during the first two years of life.
  • (2) Best estimates indicate that 1 in 500 children born today will be diagnosed with an autism spectrum disorder and that 400,000 Americans have autism or an autism spectrum disorder.
  • (3) There is little information on the prevalence of autism and other pervasive developmental disabilities in the United States. There have never been any national prevalence studies in the United States, and the two studies that were conducted in the 1980s examined only selected areas of the country. Recent studies in Canada, Europe, and Japan suggest that the prevalence of classic autism alone may be 300 percent to 400 percent higher than previously estimated.
  • (4) Three quarters of those with infantile autism spend their adult lives in institutions or group homes, and usually enter institutions by the age of 13.
  • (5) The cost of caring for individuals with autism and autism spectrum disorder is great, and is estimated to be $13.3 billion per year solely for direct costs.
  • (6) The rapid advancements in biomedical science suggest that effective treatments and a cure for autism are attainable if–
  • (A) there is appropriate coordination of the efforts of the various agencies of the Federal Government involved in biomedical research on autism and autism spectrum disorders;
  • (B) there is an increased understanding of autism and autism spectrum disorders by the scientific and medical communities involved in autism research and treatment; and
  • (C) sufficient funds are allocated to research.
  • (7) The discovery of effective treatments and a cure for autism will be greatly enhanced when scientists and epidemiologists have an accurate understanding of the prevalence and incidence of autism.
  • (8) Recent research suggests that environmental factors may contribute to autism. As a result, contributing causes of autism, if identified, may be preventable.
  • (9) Finding the answers to the causes of autism and related developmental disabilities may help researchers to understand other disorders, ranging from learning problems, to hyperactivity, to communications deficits that affect millions of Americans.
  • (10) Specifically, more knowledge is needed concerning–
  • (A) the underlying causes of autism and autism spectrum disorders, how to treat the underlying abnormality or abnormalities causing the severe symptoms of autism, and how to prevent these abnormalities from occurring in the future;
  • (B) the epidemiology of, and the identification of risk factors for, infantile autism and autism spectrum disorders;
  • (C) the development of methods for early medical diagnosis and functional assessment of individuals with autism and autism spectrum disorders, including identification and assessment of the subtypes within the autism spectrum disorders, for the purpose of monitoring the course of the disease and developing medically sound strategies for improving the outcomes of such individuals;
  • (D) existing biomedical and diagnostic data that are relevant to autism and autism spectrum disorders for dissemination to medical

personnel, particularly pediatricians, to aid in the early diagnosis and treatment of this disease; and

  • (E) the costs incurred in educating and caring for individuals with autism and autism spectrum disorders.
  • (11) In 1998, the National Institutes of Health announced a program of research on autism and autism spectrum disorders. A sufficient level of funding should be made available for carrying out the program.

SEC. 3. EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES OF NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH ON AUTISM.

  • Part B of title IV of the Public Health Service Act (42 U.S.C. 284 et seq.) is amended by adding at the end the following section:

`AUTISM

  • `SEC. 409C. (a) IN GENERAL-
  • `(1) EXPANSION OF ACTIVITIES- The Director of NIH (in this section referred to as the `Director’) shall expand, intensify, and coordinate the activities of the National Institutes of Health with respect to research on autism.
  • `(2) ADMINISTRATION OF PROGRAM; COLLABORATION AMONG AGENCIES- The Director shall carry out this section acting through the Director of the National Institute of Mental Health and in collaboration with any other agencies that the Director determines appropriate.
  • `(b) CENTERS OF EXCELLENCE-
  • `(1) IN GENERAL- The Director shall under subsection (a)(1) make awards of grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding research on autism.
  • `(2) RESEARCH- Each center under paragraph (1) shall conduct basic and clinical research into the cause, diagnosis, early detection, prevention, control, and treatment of autism, including research in the fields of developmental neurobiology, genetics, and psychopharmacology.
  • `(3) SERVICES FOR PATIENTS- A center under paragraph (1) may expend amounts provided under such paragraph to carry out a program to make individuals aware of opportunities to participate as subjects in research conducted by the centers. The program may provide fees to such subjects. The program may, in accordance with such criteria as the Director may establish, provide to such subjects health care, referrals for health and other services, and such incidental services as will facilitate the participation of individuals as such subjects.
  • `(4) COORDINATION OF CENTERS; REPORTS- The Director shall, as appropriate, provide for the coordination of information among centers under paragraph (1) and ensure regular communication between such centers, and may require the periodic preparation of reports on the activities of the centers and the submission of the reports to the Director.
  • `(5) ORGANIZATION OF CENTERS- Each center under paragraph (1) shall use the facilities of a single institution, or be formed from a consortium of cooperating institutions, meeting such requirements as may be prescribed by the Director.
  • `(6) NUMBER OF CENTERS; DURATION OF SUPPORT- The Director shall, subject to the extent of amounts made available in appropriations Acts, provide for the establishment of not less than five centers under paragraph (1). Support of such a center may be for a period not exceeding 5 years. Such period may be extended for one or more additional periods not exceeding 5 years if the operations of such center have been reviewed by an appropriate technical and scientific peer review group established by the Director and if such group has recommended to the Director that such period should be extended.
  • `(c) FACILITATION OF RESEARCH- The Director shall under subsection (a)(1) provide for a program under which samples of tissues and genetic materials that are of use in research on autism are donated, collected, preserved, and made available for such research. The program shall be carried out in accordance with accepted scientific and medical standards for the donation, collection, and preservation of such samples.
  • `(d) PUBLIC INPUT- The Director shall under subsection (a)(1) provide for means through which the public can obtain information on the existing and planned programs and activities of the National Institutes of Health with respect to autism and through which the Director can receive comments from the public regarding such programs and activities.
  • `(e) FUNDING- For the purpose of carrying out this section, there are authorized to be appropriated $33,000,000 for fiscal year 2000, and such sums as may be necessary for each of the fiscal years 2001 through 2004. Such authorizations of appropriations are in addition to any other authorization of appropriations that is available for such purpose.’.

SEC. 4. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH PROGRAMS.

  • (a) NATIONAL AUTISM AND PERVASIVE DEVELOPMENTAL DISABILITIES SURVEILLANCE PROGRAM- The Secretary of Health and Human Services (in this Act referred to as the `Secretary’), acting through the Director of the Centers for Disease Control and Prevention, may make awards of grants and cooperative agreements for the collection, analysis, and reporting of data on autism and pervasive developmental disabilities. An entity may receive such an award only if the entity is a public or nonprofit private entity (including health departments of States and political subdivisions of States, and including universities and other educational entities). In making such awards, the Secretary may provide direct technical assistance in lieu of cash.
  • (b) CENTERS OF EXCELLENCE IN AUTISM AND PERVASIVE DEVELOPMENTAL DISABILITIES EPIDEMIOLOGY-
  • (1) IN GENERAL- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall (subject to the extent of amounts made available in appropriations Acts)

establish not less than 3, and not more than 5, regional centers of excellence in autism and pervasive developmental disabilities epidemiology for the purpose of collecting and analyzing information on the number, incidence, correlates, and causes of autism and related developmental disabilities.

  • (2) RECIPIENTS OF AWARDS FOR ESTABLISHMENT OF CENTERS- Centers under paragraph (1) shall be established and operated through the awarding of grants or cooperative agreements to public or nonprofit private entities that conduct research, including health departments of States and political subdivisions of States, and including universities and other educational entities.
  • (3) CERTAIN REQUIREMENTS- An award for a center under paragraph (1) may be made only if the entity involved submits to the Secretary an application containing such agreements and information as the Secretary may require, including an agreement that the center involved will operate in accordance with the following:
  • (A) The center will collect, analyze, and report autism and pervasive developmental disabilities data according to guidelines prescribed by the Director, after consultation with relevant State and local public health officials, private sector developmental disability researchers, and advocates for those with developmental disabilities.
  • (B) The center will assist with the development and coordination of State autism and pervasive developmental disabilities surveillance efforts within a region.
  • (C) The center will provide education, training, and clinical skills improvement for health professionals aimed at better understanding and treatment of autism and related developmental disabilities.
  • (D) The center will identify eligible cases and controls through its surveillance systems and conduct research into factors which may cause autism and related developmental disabilities. Each program will develop or extend an area of special research expertise (including genetics, environmental exposure to contaminants, immunology, and other relevant research specialty areas).
  • (c) CLEARINGHOUSE- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall carry out the following:
  • (1) The Secretary shall establish a clearinghouse within the Centers for Disease Control and Prevention for the collection and storage of data generated from the monitoring programs created by this Act. Through the clearinghouse, such Centers shall serve as the coordinating agency for autism and pervasive developmental disabilities surveillance activities. The functions of such a clearinghouse shall include facilitating the coordination of research and policy development relating to the epidemiology of autism and other pervasive developmental disabilities.
  • (2) The Secretary, acting through the Centers for Disease Control and Prevention, shall coordinate the Federal response to requests for assistance from State health department officials regarding potential or alleged autism or developmental disability clusters.
  • (d) DEFINITION- In this Act, the term `State’ means each of the several States, the District of Columbia, the Commonwealth of Puerto Rico, American Samoa, Guam, the Commonwealth of the Northern Mariana Islands, the Virgin Islands, and the Trust Territory of the Pacific Islands.
  • (e) AUTHORIZATION OF APPROPRIATIONS- To carry out this section, there is authorized to be appropriated $7,500,000 for each of the fiscal years 2000 through 2004.

SEC. 5. INFORMATION AND EDUCATION.

  • (a) IN GENERAL- The Secretary shall establish and implement a program to provide information and education on autism to health professionals and the general public, including information and education on advances in the diagnosis and treatment of autism and training and continuing education through programs for scientists, physicians, and other health professionals who provide care for patients with autism.
  • (b) STIPENDS- The Secretary may use amounts made available under this section to provide stipends for health professionals who are enrolled in training programs under this section.
  • (c) AUTHORIZATION OF APPROPRIATIONS- To carry out this section, there is authorized to be appropriated $6,000,000 for each of the fiscal years 2000 through 2004.

SEC. 6. INTER-AGENCY AUTISM COORDINATING COMMITTEE.

  • (a) ESTABLISHMENT- The Secretary shall establish a committee to be known as the `Autism Coordinating Committee’ (in this section referred to as the `Committee’) to coordinate all efforts within the Department of Health and Human Services concerning autism, including activities carried out through the National Institutes of Health and the Centers for Disease Control and Prevention under this Act (and the amendment made by this Act).
  • (b) MEMBERSHIP-
  • (1) IN GENERAL- The Committee shall be composed of the Directors of such national research institutes, of the Centers for Disease Control and Prevention, and of such other agencies and such other officials as the Secretary determines appropriate.
  • (2) ADDITIONAL MEMBERS- If determined appropriate by the Secretary, the Secretary may appoint to the Committee–
  • (A) parents or legal guardians of individuals with autism or other pervasive developmental disorders; and
  • (B) representatives of other governmental agencies that serve children with autism such as the Department of Education.
  • (c) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; OTHER PROVISIONS- The following shall apply with respect to the Committee:
  • (1) The Committee shall receive necessary and appropriate administrative support from the Department of Health and Human Services.
  • (2) Members of the Committee appointed under subsection (b)(2)(A) shall serve for a term of 3 years, and may serve for an unlimited number of terms if reappointed.
  • (3) The Committee shall meet not less than 2 times per year.
  • (4) Members of the Committee shall not receive additional compensation for their service. Such members may receive reimbursement for appropriate and additional expenses that are incurred through service on the Committee which would not have incurred had they not been a member of the Committee.

SEC. 7. REPORT TO CONGRESS.

  • Not later than January 1, 2000, and each January 1 thereafter, the Secretary shall prepare and submit to the appropriate committees of Congress, a report concerning the implementation of this Act and the amendments made by this Act.

END


More With Cure Autism Now

Cure Autism Now: POLITICAL ACTION ALERT | May 13, 2001

POLITICAL ACTION ALERT – Sunday, May 13, 2001 We need the immediate help of everyone in the developmentally disabled community! A group of families have recently begun an effort to get some tax relief for the more than three million families in the US who have children with developmental disabilities. The basic idea is to […]

Cure Autism Now: Antibiotics for Autism | December 2000

Antibiotics for Autism Ivanhoe Broadcast News December 2000 Antibiotics for Autism Antibiotics for AutismTelevision News Service/Medical BreakthroughsIvanhoe Broadcast News, Inc. December 2000 (Ivanhoe Newswire) — According to the National Institute of Mental Health, about 1 in every 500 people has autism — a developmental disorder that affects language and social skills. For years it’s been largely […]

Cure Autism Now Parent Advisory Board as of June 1996

The CAN Parent Advisory Board The CAN international parent board will monitor research efforts from around the world, circulate the latest findings among the scientific work group, and coordinate fundraising. CAN believes that it is the interaction between concerned parents and researchers in the field that will help keep motivation high and the pace of […]

Loading…

Something went wrong. Please refresh the page and/or try again.



Note/Warning:

Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.


The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.


Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.


[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]


Fact: Vaccines Do Not Cause Autism.



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: