House Bill HR997 : Advancement in Pediatric Autism Research Act | March 4, 1999 #AutisticHistory

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


The following is the full text of House Bill HR997 

HR 997 IH

106th CONGRESS

1st Session

H. R. 997

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

IN THE HOUSE OF REPRESENTATIVES

March 4, 1999

Mr. GREENWOOD (for himself, Mr. SMITH of New Jersey, Mr. ACKERMAN, Mr. BALDACCI, Mr. BORSKI, Mr. BOUCHER, Mr. COSTELLO, Mr. FROST, Mr. GREEN of Texas, Mr. HINCHEY, Ms. KILPATRICK, Mr. LAFALCE, Mr. LOBIONDO, Mr. MCNULTY, Mr. PAYNE, Ms. ROS-LEHTINEN, Mr. ROTHMAN, Mr. SHAYS, Mr. SHOWS, Mrs. TAUSCHER, and Ms. VELAZQUEZ) introduced the following bill; which was referred to the Committee on Commerce

A BILL

To amend the Public Health Service Act to provide for the expansion, intensification, and coordination of the activities of the National Institutes of Health 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. 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. 5. 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 ex officio members in accordance with paragraph (2) and 11 appointed members in accordance with paragraph (3).
  • (2) EX OFFICIO MEMBERS- The following officials shall serve as ex officio members of the Committee:
  • (A) The Director of the National Institutes of Health.
  • (B) The Director of the National Institute on Mental Health.
  • (C) The Director of the Centers for Disease Control and Prevention.
  • (D) The Administrator of the Health Resources and Services Administration.
  • (3) APPOINTED MEMBERS- Appointments to the Committee shall be made in accordance with the following:
  • (A) Two members shall be research scientists with demonstrated achievements in research related to autism and related developmental disabilities. The scientists shall be appointed by the Secretary in consultation with the National Academy of Sciences.
  • (B) Five members shall be representatives of the 5 national organizations whose primary emphasis is on research into autism and other pervasive developmental disabilities. One representative from each of such organizations shall be appointed by the Secretary in consultation with the National Academy of Sciences.
  • (C) Two members shall be clinicians whose practice is primarily devoted to the treatment of individuals with autism and other pervasive developmental disabilities. The clinicians shall be appointed by the Secretary in consultation with the Institute of Medicine and the National Academy of Sciences.
  • (D) Two members shall be individuals who are the parents or legal guardians of a person or persons with autism or other pervasive developmental disabilities. The individuals shall be appointed by the Secretary in consultation with the ex officio members under paragraph (1) and the 5 national organizations referred to in subparagraph (B).
  • (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 shall be appointed 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. 6. 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



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.


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