One Month After Launch, Interactive Autism Network Reports 13,000 Registered Participants Eager to Accelerate Autism Research
The Interactive Autism Network (IAN)—the first national online autism registry, spearheaded by the Kennedy Krieger Institute, and funded by a grant from Autism Speaks—has registered an unprecedented number of individuals and families living with autism. Never before have researchers been offered access to such a large pool of family-provided data on this puzzling disorder. In only one month, IAN (www.IANproject.org) has achieved significant milestones:
- More than 13,000 registered participants
- Representation in all 50 states as well as the District of Columbia, American Samoa, Northern Mariana Islands, Guam, Marshall Islands and Palau
- Diverse family registration, including: six sets of triplets, 37 sets of identical twins and 157 sets of fraternal twins
Researchers from institutions across the country have already begun to access IAN data to:
- Supplement and enhance current research studies
- Compare and validate existing research results obtained from smaller sample sizes
- Explore hypotheses for future research and search for parallels among individuals with autism and their families in a way that was not previously possible
“The fact that IAN has already become a vital resource for researchers, so early in its lifespan, bodes extremely well for the potential of this project, and ultimately, to the pursuit of answers in autism,” said Dr. Paul Law, DIrector, Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland.
IAN has become successful in registering families largely due to the tight-knit nature of the autism community and the outpouring of support from parents. Testimonials continue to echo the great need for and tremendous potential of IAN.
“What better opportunity to help our children, to help each other and to learn more about autism. We have been given the power to DO SOMETHING to combat autism. Go to the website, accept this responsibility & watch us change the future of this heartbreaking disorder.”
– Posted on CNN.com Health Blog by an IAN participant
What is the IAN Project?
IAN, the Interactive Autism Network, is an innovative online project designed to accelerate the pace of autism research by linking researchers and families. Anyone impacted by an Autism Spectrum Disorder (ASD) can become part of IAN’s online community to stay informed about autism research, provide feedback, and make their voices heard.
In addition, families of children with an ASD can share information in a secure online setting and become part of the nation’s largest online research effort. As a result, researchers will obtain valuable data, explain findings, and collaborate with families and one another. This dynamic exchange could lead to new discoveries about causes, diagnosis, treatments, and a possible cure for this puzzling group of disorders.
Protecting the privacy of autistic people and their families faces new challenges in the era of big data.
BY JEREMY HSU
More with Interactive Autism Network (IAN)
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.
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.