Wednesday, April 11, 2007
Expanding the base for Autism research
By Miriam Falco
Managing Editor, CNN Medical News

April is Autism Awareness Month, and in many respects, awareness of the neurological disorders that fall under the "autism spectrum disorders" umbrella has grown. The latest CDC statistics suggest that 1 child in 150 has an autism disorder - autistic disorder; Asperger's disorder; childhood disintegrative disorder (CDD); Rett's disorder; or PDD-Not Otherwise Specified (PDD-NOS). That's about 1.5 million people in the United States right now. The Autism Society predicts that number will rise to 4 million in the next 10 years.

Parents of children with autism face many frustrations, including finding the proper treatments, getting access to the therapies their children need and paying for the care, because many insurance plans don't cover autism. Just this month Harvard researcher Michael Ganz published a study that says the lifetime cost of autism is $3 million. He suggests that doctors and health-care professionals urge parents to seek financial counseling, so they are able to plan ahead.

There's no test or cure for autism. But researchers around the country are looking for answers to the question: What causes autism? They're finding more clues each day. But so more needs to be learned. And who better to learn from than families with children with autism? A new project launched by the Kennedy Krieger Institute in Baltimore, Maryland, hopes to accelerate the process of unraveling the mysteries of autism by bringing researchers and families together. It has created the "Interactive Autism Network," or IAN - the first nationwide online autism registry. Parents are encouraged to register at http://www.ianproject.org/, because they know things about their child that doctors, therapists and researchers are unaware of. Linking their knowledge to the scientists searching for better treatments and a possible cure is essential. According to Dr. Paul Law, the project director who also is the father of a child with autism, a lot of families want to participate in research, but either they don't know about what's already under way or it's inconvenient for them to go where the research is being done. The IAN project hopes to bridge that gap by providing an online tool.

Does your child, or someone you love, have autism? Would you participate in the Interactive Autism Network?
Why wouldn't you participate? My son is autistic. It is nothing I want anyone else to have to suffer from. I immediately joined the registry. If we could compile all the information on those with autism and provide this information to the doctors, we have a greater chance of finding the cause. Who doesn't want that?
Hmmm, Matt, it's a bit inaccurate to state that "there's no test or cure for autism." There isn't exactly a test but there is a standard- it's currently in the DSM-IV. My oldest child has Aspergers, which used to be considered a form of autism but has since been classified on its own. However, my youngest son is a high-functioning autistic, so, I'm rather familiar with that as well.

As for the IAN project, I think it's a great idea. What better way to find a commonality then to make a big giant list? I, personally, am rather fascinated with the effect of diet on Autism (myself and all three of my sons are Celiacs) and I'm waiting for the day when they find the correlation. Meanwhile I'm going to the site to sign up!
We are the grandparents of a child with autism. Our grandson's parents are divorced and both in the military. His dad (our son) is on his second deployment to Iraq, his mom will more than likely be deployed again in early summer.

Here is our dilemma. Our grandson is in the custody of his maternal grandmother. Even though she is in the same state as we are, family relations aren't that great. We don't see our grandson often. When we call we hear about how much progress he's making ,but in truth it's just not there. Short of starting a family feud we don't know what to do. We don't feel that this is the time to broach the subject to our son. Given his current situation we don�t want to give him anything else to worry about. Sitting in the middle of a war zone, his head needs to clear

We feel like our hands are tied, as much as we want to participate in the online program we aren't sure if our input would be effective.
I have twin boys that are autistic and almost 10..they were non-verbal until 1 yr ago and are picking up speech everyday.They never had speech at all,were diagnosed at 2 but got intervention at 18 months.We need to find what is robbing these kids so young and we need to do it fast,or within 20-30 years every home will have at least 1 autistic child or in the future ALL people may have autism..then what?I have participated in the IAN project.
I have a 20 year old daughter who has many symptoms of Asperger Syndrome.Though she has never been officially diagnosed (it has always been diagnosed as Anxiety Disorder),we are finally being listened to. We are scheduled for some further testing to be done in a couple of weeks. I am so thankful that autism is finally being brought to the publics attention. Thank you and please keep onputting the word out.
I signed up on IAN. I think if we (as parents) collectively express our experiences and knowledge about autism then the medical community will better understand our kids and be better equiped to help them.
I am a parent of an ASD child. I also work in the clinical informatics field. Explore the IAN website. You will be impressed... I was!

There are layers of privacy protection: password & PIN. This is the future of research-online.

What better opportunity to help our children, to help each other & to learn more about autism. We have been given to power to DO SOMETHING to combat autism. The government has provided the research funds. The autism community has banded together to speak in one voice to promote awareness of autism. IAN lets you tell your child's story: their developmental milestones, their current treatments & your opinion of its success, etc.

Go to the website, accept this responsibility & watch us change the future of this heartbreaking disorder.
Thank you for posting this article! As a mother of a 10 year old son with Asperger Syndrome (an ASD), I cannot express enough the frustration of finding therapy in a timely basis, let alone having him diagnosed way to late.

My son has made great strides and is highly functional. I count my blessings. But with the research I have done on Autism, most recently learning that currently there are 6,000 clinical studies being conducted on cancer while only 50 clinical studies are being conducted on Autism -I find it quite disturbing. It is predicted that in the year 2008 there will be more children diagnosed with an ASD than there will be those diagnosed with leukemia, cancer and Aids COMBINED. We are at a national epidemic with 1 in 150 being diagnosed with an ASD, with 1 in every 94 being boys.

I belong to IAN and I encourage other parents of autistic children and autistic adults to register. It is VERY private and safe. The more people that register, the sooner the research will tell us WHY this is happening to our children.
When 2 autistic individuals are in a room, do they feel that they are communicating mentally and that any hand signal would be intrusive or demanding?
Yes, April is the official autism awareness month but this year it will be June. June 11is when the long over due Omnibus Autism proceedings will begin to determine whether thimerosal, a preservative in vaccine which is 49.7% mercury, and/or the MMR vaccines causes autism. The evidence is mounting weekly that the autism epidemic is due to the aggressive and reckless vaccine schedule imposed by the CDC. The CDC assures us their studies prove otherwise. The CDC recommends and profits from the administration of vaccines. This is like the tobacco industry doing a study on cigarette smoking and reporting it’s health benefits. It’s a conflict of interest. 1in 150 kids are diagnosed with autism and 1-6 are diagnosed with a neurological disorder. Kids are recovering from autism due to the courageous work of the likes of Bernard Rimland, McCandless, Usaman and many, many others. These kids toxic and are having heavy metals removed from their body and reducing oxidative stress through chelation and specialized vitamin supplementation.
There is real Autism, and then there is PDD-NOS. I'm sorry but PDD-NOS is defined in such a way in the DSM-IV manual that almost any child that has some development delays or impairments, in particular language impairment or delay, can now be diagnosed as autistic. Well, of course it's going to be on the rise then. The addition of the PDD-NOS has given legitimate power to any clinical evaluator to label a child as autistic. This is a tactic that will backfire and eventually hurt the real autism cause once the autism hysteria begins to be challegend by real cognitive related scientists and experts. This is even a more serious problem to the children who will be diagnosed as PDD-NOS for the usual language impairment and some atypical behaviour. I'm sorry, but we are acutally going backwards here instead of forward.
Yes. I have a 7 year old Girl diagnosed with Autism. I would definitely participate in the IAN. It is always good to have a one stop information source
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