The Autism Collaboration’s “Parents as Partners” Research Initiative

Autism is still considered by the majority of those in the scientific community as a genetically acquired disease occurring during prenatal development that results in lifelong disability for which there is no effective treatment outside of behavioral therapy. Fortunately, this belief has been challenged by parents who report that their infants were completely normal at birth and regressed sometime after their first birthday. And even more compelling is the fact many parents are now reporting that with interventions targeted at often over looked medical abnormalities their children have recovered from autism.

Current research is supporting these parental reports and a new paradigm is emerging which suggests that autism occurs as result of a genetic susceptibility that is environmentally triggered. As a result, the perception that autism is lifelong and incurable should be abandoned for one that follows the line of reasoning that autism is indeed preventable and treatable. This new research focus advances the belief that a cure is possible in those suffering now and that steps can be taken to make sure others will not become ill in the future.

In an effort to advance this new parent driven research paradigm the Autism Collaboration has developed a research initiative that offers several mechanisms for supporting innovative, untested and potentially groundbreaking research along with funding for small scale clinical trials, research support and clinical training fellowships. Funding decisions will be made by the partnering organizations who participate in this initiative following the guiding principle of rapidly advance the science regarding effective treatments and resources that will impact the most lives as quickly as possible.

Our Guiding Principles

The principles below reflect the Collaboration’s shared beliefs about the role of research and the impact we are striving to achieve for families living with autism. These principles guide who we are, what we fund, and how we proceed.

We lead a parent-driven collaboration dedicated to advancing autism research in the interest of all individuals living with autism today. We believe that the perception of autism as a lifelong incurable psychiatric disease needs to be abandoned to embrace one that views autism as a medical disorder that is preventable and treatable. We believe effective research has great potential to improve lives of individuals living with autism today. We believe there is no time to lose, so we have established a concise focus on treatment related research and we make decisions quickly. We are here to fund effective research—we are not the researchers. Our grantees are treated as partners for the cause. When findings are reported, we will work together to get the findings widely distributed to the autism and research communities. We are open to shifting ideas and change – we will follow the science and allow what we learn to guide future decisions.