tag:blogger.com,1999:blog-7771487.post5207099805544193303..comments2024-03-27T15:43:53.969-04:00Comments on Adventures in Autism: CDC To Have Open Meeting On ThimerosalGinger Taylorhttp://www.blogger.com/profile/04200286625735078479noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-7771487.post-89981671559693207322007-03-11T15:33:00.000-04:002007-03-11T15:33:00.000-04:00Hi There,I am a mom with a 5 year old girls with a...Hi There,<BR/><BR/>I am a mom with a 5 year old girls with autism. I don’t have my own blog, but I am appreciative of people like you who do. We need to be active and aware.<BR/><BR/>I am writing to you because Parenting Magazine just published (April 2007) an awful and damaging article about autism. I have written the editors (letter below attached). I want as many people as possible to read the letter and let Parenting Magazine know we deserve an apology for that article.<BR/><BR/>I hope you can post it or pass it along to your friends, so the word spreads. Parenting editorial email is youtellus@parenting.com<BR/><BR/>Regards,<BR/><BR/>Tere Dunne<BR/><BR/>Dear Editors,<BR/><BR/>I am appalled to read your article on autism. I appreciate your willingness to bring awareness, but your article is an absolute disservice to parents everywhere. Let’s start with the title—I am not even sure the writer is truly “understanding” what autism is all about. And how dare you call it a “hype”, considering that the NIH now estimates 1 out of 150 children in America have autism. Would you dare call all the awareness towards breast cancer, the pink ribbons, pink products, the walks, the 3-days, a hype? You would be writing apologies in every page of your magazine if you did. You owe all of us parents with children with autism and to our children an apology.<BR/> <BR/>It is interesting that Ms. Marshall writes a poor and outdated description of autism from the 1940’s, but only mentions the ADOS in passing. If you want to help your readers understand, please print a clear list of things to watch in infants. These lists are everywhere. You can pull a very good, clear one from the Autism speaks page. (http://www.autismspeaks.com/whatisit/learnsigns.php#redflags). Furthermore, you make it seem like autism is a walk in the park, that services are everywhere and that all those 10 therapies you talk about are actually effective in children with autism. The reality is that most children with autism have much more challenges than just an inability to socialize. Most have intense tantrums, problems with aggression, have sensory issues that make outings like the mall or a restaurant impossible, and suffer from developmental challenges most of you parent readers would be unable to handle. Once a child is diagnosed, services are scant, and parents spend hundreds of thousands of dollars in legal and medical fees, which are rarely covered by insurance. And ten therapies? Most of these therapies are actually “quackery”, and uninformed parents spend a fortune and allow school systems to offer substandard schooling. Good services for children with autism can run $80,000 a year, and are not covered by most public schools. Furthermore, if you had actually read the Educating Children with Autism book you recommend, there are very few therapies that are actually endorsed to educate children with autism, mostly Applied Behavioral Analysis, which you don’t even mention. Lastly, even getting a diagnosis is not that simple. Had you asked any of the experts you interviewed, you would have discovered that the waitlist to visit any of their centers is at least 6 months into the future, and considering early intervention is key, six months is a long time.<BR/><BR/>And the good news? What good news? Until President Bush signed the Combating Autism act a few months back, autism was the most prevalent childhood disability, yet received the least amount of funding from NIH or any other government entity. The reality is that we are NOT at the brink of learning what genes cause autism. We are actually not even sure if that is the cause, although there seems to be plenty of flags that point researchers in the genes direction. We have moved forward, but your conclusion is simplistic and wrong. And although it is true that many children with autism now have more opportunities than earlier, thanks to therapy, to declare victory on the thought that perhaps 20 percent of children with autism could live independently someday is pathetic. The costs to our country in terms of caring for the other 80 percent is going to be overwhelming. On a more personal level, I’d love for Parenting to dare tell parents of children with Leukemia, for example, that it is okay that only 20 percent will live (so much better than the 2% of years ago!), and that they need not to worry, despite the fact their kids are dying, because we’re in the “brink” of finding a cure. <BR/><BR/>You should be ashamed that this piece of writing ever made it to print. I, for one, am glad my subscription to Parenting is about to expire. Trust me, I have no desire to renew it, and will spend my money somewhere that offers real value to my family. <BR/><BR/>Sincerely,<BR/><BR/><BR/>Teresita RamosAnonymousnoreply@blogger.com