People who are organized, efficient and do not tolerate obstacles in their path?
The kind of people who set seemingly crazy high goals and then actually follow through and achieve them?
Well I am not one of them and I suspect neither are all of you. That is OK! Listen we all have our own strengths. If I can make sure Christian gets his GABA and 5HTP before bed I am at the top of my game.
At AutismOne we saw incredible ASD parents Jen VandDerHorst and Mark Blaxill getting some amazing $#%^ done.
Jen is the proud mother of an extremely hard working, severely affected young boy with autism. Jen has her own business, which needless to say is a full time job. In her spare time, Jen co-founded an autism treatment center for ASD kids in MN as well as co-founding our beloved Canary Party. In her spare, spare time Jen has worked tirelessly to establish relationships between the autism community and congressional leaders. On behalf of the Canary Party Jen traveled all over the country (again in her “spare” time and with her own $) meeting congresspeople and spending time with their staffs.
Mark Blaxill has two lovely young adult daughters, the younger of whom has autism. Mark co-founded SafeMinds and the Canary Party. Mark has spent his career as a very successful business management consultant. In his “spare” time Mark traveled the country researching and writing his seminal book, co authored with Dan Olmsted, “Age of Autism.” Like Jen, Mark does a great deal of government advocacy at IACC our behalf. In his spare, spare time Mark works tirelessly behind the scenes reading and decoding all autism research literature, and I mean all of it. Mark traveled extensively (with his own $, naturally) while persuading Congressional leaders to come to AutismOne meet our families.
Jen and Mark said that the Chief of the Government Oversight Committee, Representative Darrell Issa was coming to AutismOne. "Right," I thought! So is Francis Collins. Ha! Keep dreaming!
Like many of you I was already blown away by the fact they had gotten some of greatest congresspeople to attend: Representative Dan Burton (a superhero!), Former Representative Dave Weldon, a rare physician not afraid of the truth and not afraid to stand up for ASD families, Representative Posey, Poul Thorsen’s worst enemy, an amazing cross examiner (Wow I would want Posey on my side in a courtroom) and outstanding autism advocate. So that is a pretty impressive list, I mean were you really expecting more? I wasn’t.
Jen has a great sense of humor and is something of a joker so I asked others if Chairman Issa really was speaking at AutismOne. He was! You remember Chairman Issa, he lead last year’s groundbreaking congressional autism hearing, the first in 10 yrs.
Chairman Issa is a pretty busy man. His committee was simultaneously holding hearings on Benghazi and the IRS yet Issa wanted to come to Chicago to talk to AutismOne families. Did I mention that Issa’s district is in California? So Issa lives half the time in DC, half the time in CA but made time to come all the way to Chicago over Memorial Day weekend?
Chairman Issa gave an incredible, heart felt, impassioned speech about the need for government transparency at the NIH and the CDC. As he was speaking I was thinking to myself, “didn’t President Obama promise his would be the most transparent administration? So stop dragging your heels and process those Freedom of Information Requests before we all grow old and die.” Issa also related how many similarities he noticed between those with traumatic brain injury and autism. TBI is not a genetic disease. We are all born with certain genetic vulnerabilities yes, but it takes a powerful environmental trigger to cause a neurological catastrophe.
By the way I did invite the entire leadership of the Autism Treatment Network to AutsimOne. Dr. Dan Coury and Dr. Clara Lajournchere have been leading this government funded NIH initiative for 7 yrs. They did not respond to my invitation. It is a shame they were not there.
There is a spectrum on the get $%^ done for the autism community continuum. There is Jen, Mark, Becky Estepp, Candace MacDonald, Jenny McCarthy, and the Arrangas (thank you for a mind-blowing conference!) on one end. Me, you and regular families at A1 are in the middle. I mean we had to take time off work and/or find money to pay for the trip and find money to pay for the childcare while we would be away. It is a logistical nightmare. One the bottom of the spectrum are the usual suspects at the CDC and assorted unelected bureaucrats at the NIH. While these people are debating the merits of the 1,000th learn the signs campaign, and the 2,000th face gazing study Jen and Mark were actually making something of consequence happen.Thanks to Jen and Mark I am inspired to visit my local congressional and senatorial offices and ask for their help securing some hard to acquire autism information….So many questions, so few answers, but like you, I am not going anywhere. Let’s get some good $%^& done. Anyone have any suggestions for information to request?
Katie Wright is Contributing Editor to Age of Autism.