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

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The full report is available on the AGRE catalog pdf. Below is the introduction.

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October, 2000
Cure Autism Now
Autism Genetic Resource Exchange Re: AGRE Catalog

Dear Colleagues:

It is a great pleasure to be able to introduce our second edition of the catalog for the Autism Genetic Resource Exchange (AGRE), an unprecedented resource for the study of autism genetics. There is no ques- tion that complex neuropsychiatric diseases such as autism are best approached by collaborative research efforts that pool large sample numbers to obtain sufficient power and meaningful results, rather than groups working independently with smaller samples. The goal of AGRE is to facilitate more rapid progress in identi- fication of the genetic causes of autism and autism spectrum disorders by promoting sharing and collabora- tion. This collection of a large set of multiplex families is a first step in that direction.

AGRE is a DNA repository and family registry, housing a database of genotypes and phenotypic informa- tion available to the entire scientific community. In this second edition of the AGRE catalog, there are a total of 225 families currently available for distribution, 197 of which are multiplex and 144 of these who have not been part of any other genetic study, to the best of our knowledge. As they become available, additional family pedigrees will be posted on our online catalog, which based on the expanding nature of the resource, provides the most up-to-date availability of pedigrees and biomaterials (www.agre.org). Cell lines have been established and quality checked for each individual in this collection.

The diagnosis of autism or P.D.D. has been made using the standard Autism Diagnostic Interview—Revised (ADI-R) algorithm, and all raters have been trained and validated (see accompanying letter from Dr. Catherine Lord). Most of these families have had extensive evaluations by a variety of pediatricians, psychiatrists and other neurodevelopmental specialists. However, these evaluations are not uniform. In order to make this resource available to the scientific community as rapidly as possible, we have chosen to characterize these families in a tier-wise fashion. All of this information will be entered into a centralized database and made available through the AGRE Web site, using the appropriate security precautions, to participating researchers.

ADI information (including regression and verbal vs. non-verbal ratings), family structure, and ethnicity data are available on all catalog families. Autism Diagnostic Observation Schedule (ADOS) evaluations, uni- form pediatric neurological, neurobehavioral and genetic evaluations are currently available on about 50 fam- ilies in this catalog. These data will continue to be collected over the next 12–18 months on the remainder of these catalog families. In addition, an extensive questionnaire regarding a large variety of phenotypic and family history issues, potentially valuable to those attempting to define sub-phenotypes for genetic analysis, will soon be completed.

To date, 200 of these 225 catalog families have been screened for Fragile X by PCR by Dr. Ted Brown. Two families of the 200 families have tested Fragile X positive. In order to rule out other chromosomal abnormal- ities, karyotyping is currently being conducted on the entire catalog family collection, as well as FISH analy- sis, in the laboratory of Dr. David Ledbetter. Another interesting feature of this collection is the high number of multiple births. Some investigators may not want to use this subgroup of patients for genetic studies because of potential environmental confounders. However, these samples are in the catalog and are available. Zygosity has been confirmed by genotyping.

We expect to continue adding families to the AGRE collection over the next few years with the goal of including more than 500 families. We will also continue to collect and compile extensive genotypic and phe- notypic information which can be accessed through AGRE online databases. Data on the existing collection are now available online in a secure Web-based format that investigators can query.

There are several ways to obtain access to the AGRE samples. Scientists and others must apply to the Steering Committee for access. When approved, orders are sent to the AGRE resource at HBDI. DNA and clinical information will be available to any credible scientist for genetic analysis, ranging from whole genome screens to candidate gene analysis. Those who contribute their multiplex families to the resource will be given an equal number of families for analysis, free of cost. Additional multiplex families will be available for a nominal fee, roughly equal to HBDI’s cost, to any interested qualified researcher, whether or not they con- tribute to the gene bank. Thus, those without any previous clinical or laboratory experience in the field of autism will have equal access to these samples for pursuing studies that they believe may lead to a better understanding of autism.

An initial genome screen has been completed on 130 of these 225 families using the James Weber version 6 microsatellite marker set with additional markers selected from the Marshfield Database by Dr. Conrad Gilliam at Columbia University. The genotypic database is available to approved researchers at Web site http://www.agre.org.

Given the three groups of whole genome scans that have recently been completed in the first round of efforts to identify chromosomal loci contributing to autism, the availability of this resource is particularly important for the replication of these results and for helping to narrow loci. Since these samples are available to any qualified researcher at a fraction of the cost that it actually would cost them to ascertain an equal number, this provides a cost-effective and efficient way to replicate and expand on these initial studies. In addition, we hope that it will aid in fostering collaboration between groups working in autism genetics and perhaps, eventually, a central repository and database where information and samples are shared.

We welcome your interest and participation in AGRE. Please feel free to contact any of the members of the AGRE Steering Committee if any questions about this resource remain. Please direct any inquiries to Janice Sowinski, HBDI Division Director, 800-345-4234, Ext. 232, at the Human Biological Data Interchange (HBDI), whose staff provide the day-to-day administration of AGRE, or to Cure Autism Now at 323-549-0500, which provides funding and oversight for this resource.

Sincerely yours,

Daniel H. Geschwind, M.D., Ph.D., for the AGRE

scientific advisory board:
Bruce Miller, M.D.
W. Ted Brown, M.D., Ph.D. Joseph Buxbaum, Ph.D Edwin Cook, M.D.
T. Conrad Gilliam, Ph.D. David Greenberg, Ph.D. David Ledbetter, Ph.D.
Stanley F. Nelson, M.D. Carol Sprouse, E.D. Jerome Rotter, M.D. Gerard Schellenberg, Ph.D. Rudolph Tanzi, Ph.D.
Kirk Wilhelmsen, M.D., Ph.D.

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More With AGRE

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More With Daniel Geschwind

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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 work. In 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.

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

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Fact: Vaccines Do Not Cause Autism.

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