Hi there...My name is Ashley Reynolds. I am with KOMU TV 8 in Columbia, Missouri.
I am the reporter for the series, "Combating Autism from Within."
I did a story back in July about Autism. Through the huge response I received, we have decided a series is needed. We have a team for the series to make sure we do our best to cover this passionate topic.
Any and all ideas are welcome...for now we are using this blog as free flow of information.
Our goal with the series is to inform the public about the spectrum...you tell us what you think we should cover!
Thanks!
Ashley
7 comments:
Ashley,
It's wonderful that you are covering such an important topic. I am the mom of a little guy who is now 4 and on the more severe end of the spectrum. For ideas regarding issues that families face related to autism, come check out the blog that I'm writing for Parents.com
It's http://parents.com/autismville
Hope this helps and thanks again for your dedication to reporting about such a crucial issue...
Regards,
Judith Ursitti
http://parents.com/autismville
check out the Autism Hub blogs autism-hub.co.uk
Kevin Leitch's Left Brain/Right Brain group blog is the most heavily trafficked of all the autism blogs on the web, lately he's been getting around 8,000 unique visits (not counting people who visit more than once) a DAY.
My blog (autismdiva.blogspot.com), also one of the hub blogs, is getting a few thousand visits a day, too.
Do a google search on "jenny mccarthy autism" and see how many hub blogs are in the top 20 websites that come up.
You might want to interview Estee Klaar-Wolfond from The Autism Acceptance Project taaproject.org
She also has a blog on the autism-hub.
Make sure you interview as many autistic adults as you do parents because their views should count as heavily as those of non-autistic parents, and remember some autism spectrum adults are also parents of ASD children, some of their children are "as seriously autistic" as any other "classic autistic" or "Kanner autistic" child.
Joseph of "autismn natural variation" blog is one of those. Some of the hub bloggers were considered, "classic" or "Kanner" autistics as children, others got an ASD diagnosis as teens or adults.
Ashley,
Want to do what other journalists haven't? Do a story with autistic adults in it. Do a story about how the issue isn't combating autism, but accomodating our autism, expanding opportunity, inclusion and acceptance. Afterall, your child will be autistic a lot longer than the "fight against autism". But, your editor might not want a story about autistic adults and acceptance and accomodation, it's not very "sexy".
CS
Thanks for starting this blog.
I hope it remains open and unbiased as many other blogs have become so one sided and agenda ridden. That just confuses parents. Open minds and open dialogue is what is needed.
This is not a right or wrong/black and white issue.
Where to Start Addressing Important Autism Issues?
1 ~ I think one of the biggest things the media misses is to focus on how can we help families with these kids survive financially. So many of their treatments are considered, "alternative," and the family has to struggle to pay for it. Usually one parent has to stay home to be there to help the child through school, in home therapy, ect. and the other parent is suppossed to make enough money on their own to pay for all of the so called, "alternative," treatments. Getting disability to supply money for your child is kind of a joke too. Unless you make almost nothing they will give you nothing. How are we suppossed to help our kids when we can't afford their treatments or we have to pick and choose which ones we do because we can't afford it? Does most of the world know what it feels like to have a child depending on you for treatment that may make or break their future and you can't give it to them? As a parent that loves their child like nothing else in this wold it is absolutely devestating. You feel like you are letting your child down everyday. Not to mention that many insurance companies will not cover children with Autism. My husband lost his job and we lost our insurance. When we tried to find new insurance it was a nightmare. Every rep. I would talk to would be ready to sign me up until they heard that my son is autistic. As soon as they hear that they would tell me, "i'm sorry we can't cover you." That would be the end of the phone call.
2 ~ In addition, IEP's are a nightmare for parents because they are fighting to get what their child NEEDS and the schools fight them on it. While they are battling the school their child is going without services they desperately need and falling further behind. There are some political issues such as funding and testing that supplies that funding that definetly play a role in the types of services the school will provide for our children, however, it's concerning that it all seems to come back to the money. If the bottom line is that schools are having trouble paying for these services then shouldn't we be addressing how to overcome that problem? With as many children that are now being diagnosed with Autism it should become increasingly obvious that we need to do something to provide these children with a fair chance at an appropriate education so that they may one day become productive members of our society. As parents I cannot express how horrible it is to have to fight a school system to provide services for your child so that they may have a chance at a bright future. It makes our hearts ache to watch our children take a back seat to nuerotypical children. While it is equally important to provide an appropriate education for nuerotypical children our children should never have to be left behind.
3 ~ While I think it is admirable that many talk show hosts are trying to raise awareness about autism I think it is also important that they try to find guests for their shows that are relatable to the vast majority of parents dealing with this issue. When the guest speakers are celebrities, (no offense to any celebs with autistic children...ultimately we are in the same boat) with massive amounts of money to help their children, it allows the aspect of financial hardship to be overlooked. The majority of parents that have children with autism STRUGGLE to afford the treatments for thier children and recieve minimal, if any, help from their county or state. My own family for example, had to struggle for approx. 5 months strait working overtime to be able to afford the testing necessary to provide treatment to our son. After the testing was done it cost us approx.: $100. per month to retain a DAN doctor, $122, per month for B12 shots, $350. per month for bio-supplements, $300-500. per month for the GFCF diet (we have 2 kids on the diet) and thats with only one parent working because I had to stay home to be there when my son was getting his therapy which was 40 hours per week in my home. I would do it all over again to help my son, but, our family has definetly struggled and we continue to. The point that many families with children with Autism go through this gets lost when the main speakers are celebrities with a much higher income than the average family.
There have been many other wonderful points brought up about the necessary awareness in different areas that need to have attention drawn to them. The bottom-line is there is still lots of work to be done. However, we as a community of Autism - parents are a strong community, a determined community, a dedicated and loving community that will not give up in raising this awareness. We will stick together for the betterment of the future of our children.
Ashley
I would like to see a story done on the politics of autism
CDC, NIH, IOM etc vs autism families, and autism organizations such as A-Champ, Generation Rescue.
The fight to get the truth out with the government controlling the media.
The struggle for these autism groups to get bills in states and at a Federal level passed inorder to ban thimerosal in all vaccines.
The fight to get an independent group to study vaccinated vs unvaccinated children--which will settle the mercury in vaccines controversy once and for all.
Another expose on how the CDC mandates vaccines, has control over the program and yet is the authority on their safety at the same time--getting another agency to oversee vaccine safety-
a tall order, I know
If you discuss vaccines, please make it clear that whether or not to vaccinate your child isn't a personal choice affecting only your child - these are *infectious* diseases, and in any population, if the percentage immune is under about 80% (ask an epedimiologist for the accurate percentage) an epidemic is possible. Some kids are vaccinated but still susceptible, or can't be vaccinated due to things like immune issues, or are younger than the usual age at vaccination. As long as all those people are a low enough percentage, it'll be fine, but if you start adding in parents worried that vaccines might cause autism, there's a very real chance that not enough people will be vaccinated. Before vaccines, kids were dying every year from these kinds of illnesses. The most common cause of viral meningitis was measles.
Certainly, interview autistic adults as well. Too many news reports about autism completely ignore their perspective. You might want to check out ballastexistenz.autistics.org - an excellent blog run by an autistic woman.
Another interesting issue is school problems. I was told by my teachers that I was doing math wrong because I had different (but correct) ways of answering math problems. My teachers also tried to stamp out my unusual interests and make me act normal. I was shocked later to discover that this behavior is standard treatment for autism - it was so harmful to my self-esteem, self-understanding and ability to function (partly anxiety, partly trying to stamp out useful behaviors). A great illustration of this is the article Let's Pretend in the library section of the www.autistics.org website.
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