Monday, June 18, 2007

Fighting Over Autism

I've been reading a lot lately about all the in-fighting in the Autism community. It reminds me of Jr. High when the main combatants went to the sand pit near the school right after the last bell.

We would like to know, not only how and maybe why our 6 children are on the Autism spectrum, but what can we do to help them today. We feel that from our research that it must
be a combination of genetics and environmental factors.

Autism Speaks has become the Autism fund raising 800 lbs gorilla. They are doing a lot of research and we are currently involved in the genome study they have funded. What I'd like to see is a branching out from a research mainly mode to include areas that can affect families now. Treatments, diet, education, etc. Follow-up on areas that are having some success and see what else a bunch of money may reveal. Then let us parents know what HELPS our kids. Something now, not just research of causes. That's a 'nice to know' for us that already have Autistic children.

Autism is a spectrum disorder. We need a spectrum approach that can allow the funding to be used for each group to have their own soap box. If Autism Speaks can put all of us under their umbrella, great, if not lets support a group that will.

I named our new blog Autism Bites because we were surprised by the news that all six of our children were ASD, 'snake bit' if you will. I would like to call for a stop to all the Autism community fighting. If well funded groups truly want to make Autism a thing of the past put your money where your mouth is. Not into your pockets, while providing lip service only.

Dad

8 comments:

TR said...

Thank you for visiting my blog, and I appreciate your comments. I am also a veteran, Vietnam Era though, and have traveled and worked in many other countries. If there were a better freer place to live, I would be there.

I found your blog by reading other blogs about autism and seeing your link. I had never heard of a family with six ASD children, and am touched by the way you write about your situation.

I support your opinion that a broad spectrum of autism research is needed. Arguing about which research stream is most significant is not necessary and not indicated by what we know about ASD.

irene said...

I enjoyed your post today. Thank you for taking time to post your experience, impressions and opinions.

spydyee said...

Here are my blogs:
http://autismisafamilytradition.blogspot.com
http://autistic-survival-guide.blogspot.com
http://combating-autism-speaks.blogspot.com

I sent out an e-mail and blog challenge to everyone on my lists giving them your t-shirt webpage. One of my best fiends and an active youtube Autistic dad of a beautiful Autistic son bought 10 shirts from you today. Go visit him here.
http://www.youtube.com/profile?user=christschool
then come visit me
http://www.youtube.com/profile?user=Spydyee

Kaye said...

John and Robin,

I am one person who was very disgusted by the "whiner" label in the autism group. I wrote a post in response, but GUESS WHAT? The moderator chose not to post it. I would like to send my email to you in private, but I can't find your email address. Please email me.

Much love, Kaye

Dadof6Autistickids said...

Kaye,
I don't have your email either : (
We are autism_bites@yahoo.com

Dadof6Autistickids said...

Spydyee,
I haven't seen the 10 shirt order yet (probably just slow update from the manf), but...

I DID see your URGENT call on your blog and I'd like to say THANKS, WOW, YOU'RE THE BEST!

BTW, how did you here about us?

tj said...

You are looking for something that works for us that already have children with autism.

Check out www.rdiconnect.com.

anmarie said...

John and Robin,

I can fully appreciate the lives you lead..I am mom to 6...4 of them on the spectrum. I also have had the nasty looks, strange comments and numerous insults by our school system. My hat is off to you guys. We also are dirt broke and as soon as I find some spare money.. I will be ordering some t-shirts..they are amazing.I just started my own blog today - autismaroundamerica- and I'll be adding you guys as one of my favorites. Reading thru your posts is like seeing my life thru someone elses eyes. I'll be posting on my blog about a project we did hope you have time to check it out.