Aspie Dad

Not Autism Speaks is a new website offering a viewpoint of Autism Speaks that is more in line with myself and some (many? most? I hope so) other Hub members. This is from their home page.

Greetings. If you’ve arrived at this site, it’s probably because you were looking for information on the well-known charity Autism Speaks. What you may not know is that, while this organization maintains a veneer of non-controversiality, you should carefully consider supporting Autism Speaks or relying on them for information.

In a nutshell: Why you shouldn’t support Autism Speaks

• They have produced propaganda which demeans autistic individuals and may encourage “mercy killing”
• They do little to actually assist autistic individuals
• They censor bloggers and website owners who criticize them

• They fund research that many autistic people consider objectionable
  

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Today is Autistic Pride Day, something that originated a while back with Aspies for Freedom if I recall correctly. [later: Kristina thinks so, too. note: I edited my Autism Pride Day link to match her's as well].

As part of the welcome addressing of the needs and concerns of the real autism and autistic community in regards to science and as part of their efforts to address the pseudo-science and quackery of the agenda of anti-vaccine groups such as Generation Rescue et. al, the AAP are looking for some rational parents to help them. I am offering them my details and I would urge any parent of an autistic child who is sick of hearing the unscientific and self-serving agenda of such groups -– groups who not only readily belittle autistic people but also gladly place the health and well being of others at risk for absolutely no purpose to contact the AAP to offer their details also.

If you wish me to pass on your details, please either leave your name and email address in the comment section of this post or email Kevin Leitch or Susan Stevens Martin of the AAP directly. Her email message follows.

Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child’s vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out on the issue. We will contact candidates in advance to conduct
pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.

As the Jenny McCarthy and “Eli Stone” stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP’s goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics
(847)434-7131

[bad story link corrected--ed.]

This came from our local Asperger’s/High Functioning Autism support group and I thought I would pass it along. Our own Danielle Wendel co-wrote Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions for Addressing Everyday Challenges. Too bad they didn’t interview her as well.

GIRLS WITH AUTISM ON “NIGHTLINE” WEDNESDAY, TOMORROW, JANUARY 23rd

Tomorrow night, Nightline continues its series on autism by exploring the relatively rare occurrence of girls with autism. In the U.S., far more boys than girls are diagnosed with autism. That fact alone has consequences: it tends to focus most of the research, effort, and money on boys. But in a surprising twist, correspondent John Donvan and producer Caren Zucker talk to several researchers and psychologists who believe there are actually more girls with autism in the U.S. than diagnosed. Not only may there be many under-diagnosed girls, according to these experts, but some girls with autism may be assigned some other diagnosis. In fact these girls are often being under-diagnosed or diagnosed with something else. The researchers believe that many of the symptoms are being missed, or that they are just more subtle in girls. Nightline takes an in-depth look at how girls and boys are brought up culturally, and how these differences could contribute to a misdiagnosis in girls, resulting in the harsh reality that we just don’t know how many cases of girls with autism really exist.

Brenda Smith Myles, an associate professor in the Department of Education at the University of Kansas, suggests girls with autism can fake “normal,” because girls in general get more lessons than boys in how to behave. Smith tells Nightline, “They are told not to get angry, to be nice, they are told to share, all of those behaviors.” She goes on to say, “It’s more appropriate if you will for a boy to have a tantrum and major meltdown than a girl.”

John Donvan talked to 14-year old Victoria Roma, about the differences between girls and boys with autism:

Donvan: Do you think it is more challenging for a girl with autism than a boy?

Roma: “It’s really harder to hook up with friends, especially the neighborhood kids.”

Donvan: Harder for girls than boys?

Roma: “Yeah.”

Donvan: Why would that be?

Roma: “Because girls are concerned about how the world thinks of them, less than boys.”

Donvan: What are the things that are challenging for you?

Roma: “I feel like I’m thinking but I’m not thinking at all. And also, it’s a challenge for me to be aware of everything; am I flapping? Was that a joke I just heard? Should I be laughing? Should I not be laughing? Should I be serious at this time? Can I be a little silly at this time? You know…”

************************************************************************
Nightline’s in-depth report on girls with autism airs on ABC News World News with Charles Gibson at 6:30pm (ET) and then on Nightline, Wednesday, January 23, 2008 at 11:35pm (ET/PT).

For more information, please visit our website at:
http://www.abcnews.go.com/Nightline/story?id=4177353&page=1

Nightline is anchored by Cynthia McFadden, Terry Moran, and Martin Bashir. John Donvan and Vicki Mabrey are correspondents. James Goldston is the executive producer. “Nightline airs at 11:35 p.m. (ET/PT) weeknights on the ABC Television Network.

ABC News Media Relations:
Andrea Jones 202-222-6896
Alison Bridgman 202-222-7370

There has long been discontent with the services provided in Nevada for children identified with ASDs. The Nevada Bureau of Early Intervention Services [EIS] provides therapists and other professionals to families to meet the needs of developmentally disabled children from birth to 3 years of age. This service is free to legal residents of Nevada. Unfortunately, this service has suffered from under-staffing (based on wait times and the fact that Nevada EIS “is currently in violation of a federal law requiring children to receive services within 30 days of their evaluation by the agency”) and what can appear to be indifference from the staff they do have.

Parents contend state fails autistic children [Reno Gazette-Journal]

Even before the state’s 4.5 percent budget cuts hit social services agencies, a Nevada program to help infants and toddlers who have special needs is already unable to meet its mandate, officials and parents said.

Long waiting lists have overwhelmed state workers who provide early intervention services to young children with disabilities. And while some parents are pleased with the state’s services — such as speech and physical therapy — some parents of autistic children say the state is falling far short of the goal to help children with autism.

They said proper treatment, which many experts say involves at least 25 hours a week of behavioral therapy, is expensive and labor-intensive. Some parents complain that the state agency avoids providing such therapy. But state officials said each treatment plan is carefully designed to fit the needs of individual children and that some sort of behavioral intervention is always included in autism treatment.

The Nevada Bureau of Early Intervention Services can’t serve all the children who already have therapy plans — a violation of federal law, officials admitted last month. EIS gives free help to children (from birth to 3 years) with disabilities such as deafness, Down syndrome, cerebral palsy and mental retardation.

But when it comes to autism, some parents complained that EIS provides a minimum of help.

If parents want to comment about the stories, best thing is to send a letter to the editor, either via email, faxed to the editor at 775-788-6458 or sent by regular mail to: Reno Gazette-Journal, Letters to the Editor, P.O. Box 22000, Reno, NV 89520.