Cure Autism Now | Finding a Web of Support via Newsweek | Spring/Summer 1997 #AutisticHistory

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


Finding a Web of Support

Online sites offer information and a sense of community

By CARLA KOEHL

Park benches will always be great places to pick up parenting tips. So win back fences, doctors’ offices and board-rooms. But for families of children with disabilities, all the chats in the world can’t begin to provide the depth of information-and, often, the level of understanding and sympathy that’s available online. Which is why, for every major disorder and disease, it seems there’s a Web site or online support group. It’s also why some of the best Internet resources are created and maintained by the very parents who need them most.

Case in point: Portia Iversen. When her son, Dov, was diagnosed with autism at 21 months, Iversen feverishly hunted for information about the disease. “I would just spend all night going on different neuroscience Web sites,” she says.

A relief? Sort of. Like so many mothers before her, she found it wasn’t enough, especially for narrowing down the best research studies and finding the most plugged-in parents. So in November 1995, when Dov was 3 1/2, the Los Angeles sit-com writer put her career on hold to cofound Cure Autism Now with her husband, movie producer Jonathan Shestack.

From CAN’s Web site (http://www.canfoundation.org/), users can now get updates on research studies and grant proposals, and hyperlink to autism newsgroups.

Dozens of other top parent-created sites on everything from Down syndrome(http://www.epix.net/~mcross/down-syn.html), Sturge-Weber syndrome(http://www.centex.net/~huntjul/index.html) and infantile Refsum’s disease (http://www.pacifier.com/~mstephe/) are connecting families to one another, going far beyond the fare offered in health sections of online services or even online parenting magazines. Along with Parents Helping Parents (http://www.php.com/)and the Usenet’s hundreds of special-interest bulletin boards, they’re creating a sense of community among families who – either because they live in remote areas or because thy’re coping with such rare diseases – would otherwise feel nothing but isolated.

Also keep in mind: some of the best sites are those whose sole purpose is to link users to as many different childhood-disability and disease pages as possible. 

Internet Resources for Special Children (http:// http://www.irsc.org/) was created by Julio G. Ciamarra, whose son was born with cerebral palsy, epilepsy and moderate retardation. 

Rare Genetic Diseases in Children(http://mcrcr4.med.nyu.edu/~murphpOl/homenew/htm) is maintained by staffers at the New York University Medical Center. WellnessWeb (http://wellweb.com/index.htm) pays such close attention to issues like treatment options, drug dosages and physician selection that it won a 1996 Best Site of the Year award from Net Magazine. Its sickle cell anemia link (http://www.wellnessweb.com/masterindex/sicklecell/about_sicklecell.htm) goes a lot further than other sickle cell sites to focus on the disease in African-American children. Another excellent site is the

 National Institutes of Health home page (http://www.nih.gov), where just typing “childhood” into the search engine field purs up dozens oflinks to highly specialized research studies, including papers on acute lymphocytic leukemia. Try finding those on a park bench.

With JEANNE GORDON
in Los Angeles

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


The Autism Community Is Not The Autistic Community

* The “autism community” is not the Autistic Community. The autism community was created by non-Autistic led organizations and includes mostly parents, professionals and their friends. Most of what the world knows about autism is sourced from the non-Autistic “autism community.”


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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