Archived | Autism Speaks: AGRE Hits Publication Milestone | July 2007 #NotAnAutisticAlly

AGRE Hits Publication Milestone

The Autism Genetic Resource Exchange (AGRE) reached a milestone this week, as the 101st publication citing the AGRE database was published.

The largest private collection of families with two or more children with autism, AGRE accelerates the pace of autism research by providing clinical and genetic information to qualified researchers.

AGRE was created by Cure Autism Now in 1997 to advance genetic research in autism spectrum disorders. AGRE psychometricians, physicians, and phlebotomists travel nationwide administering standardized assessments, conducting interviews and collecting blood. This information is then made available to researchers via the Internet System for Assessing Autistic Children (ISAAC).

“There are currently 186 researchers from 13 countries approved to access the resource and now over 100 publications that have relied on the resource since the first publication in 2001” said Dr. Clara Lajonchere, Autism Speaks VP of clinical programs, who has been leading the AGRE program since 2003.

“The number of publications that have relied on the AGRE resource is testimony to its impact on the scientific community.”

Scientific journals which have cited the AGRE database include Science, Nature Genetics, Molecular Psychiatry and Proceedings of the National Academy of Sciences.

AGRE is currently developing a series of on-line surveys for families that have participated in the program in order to gather additional information on children and families that will supplement and enhance the existing database.

“Parents are our true partners and every bit of our success is a result of their dedication to the research process” added Dr. Lajonchere.

[NOTE: I’d like to interject here and share the majority stakeholders in this aren’t parents of Autistics. Their majority stakeholders are Autistic people. – Eve]


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.

Explore Autistic History


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