Go here to read another great article, this one by Steven Salzburg.
Go here to read the article.
Imagine if your child has been suffering and struggling with autism for 6 of the 7 years she has been alive. The day arrives where members of the United States House of Representatives hold a committee meeting to probe the federal response to autism. It’s very exciting, a huge day in all of our lives. Critically important as 1 in 88 children in the United States are on the autism spectrum.
The day finally arrives and it couldn’t have been more upsetting. Last night it seemed as though we had traveled back in time.
Some of the members of the Committee on Oversight and Government Reform are some of the more famous clowns of the last election cycle: Darrell Issa, most recently infamous for releasing senstive State Department cables that compromised the identity of Libyans working with the US Government; Jason Chaffetz, who recently was forced to admit that he among with other GOP members voted to decrease security for our ambassadors overseas; Scott DesJarlais, the staunch pro-life, married, medical doctor who paid for abortions for his patient-girlfriends; and Joe Walsh, the recently defeated Illinois Congressman who accused his opponent, Tammy Duckworth for bragging about her military service as a Blackhawk pilot and injuries in the Iraq war.
So, here we are. We get our chance before powerful Congressmen to talk about this epidemic. And what comes out of that meeting? More vaccine talk AND experts who in some cases didn’t seem to know the answers to the questions that were being asked. It also appeared to me as though for some of the people on the committee, this is the first they were hearing of autism.
One result of this meeting was a request by a representative to get a list of people who have been blackballed? Oh you mean like Andrew Wakefield, the British doctor who paid children at a birthday party for blood samples and then produced fraudulent results in a study, so he could be paid hundreds of thousands of dollars from a law firm? The person that singlehandly set off the MMR scare that caused huge outbreaks of measles? That’s your move?
One Congressman asked a representative from the Centers from Disease Control why thimerosal was removed from vaccines. The answer: I don’t know. Seriously? You don’t know? I know! There’s a little bit of the background in this link
But, there’s more to it. much more detail than this space can provide, having to do with teleconferences instead of meeting in person and key people in the decision making process were not availble for these meetings. It became a snowball going down a mountain. Meanwhile the removal of thimerosal seemed to show that there was a reason to be afraid when there was not. Meanwhile, vaccines have been thimerosal free since 1999 and the autism rates have skyrocketed. (For more information, read Autism’s False Prophets by Paul Offit.)
Of course, there were thoughtful people too, who asked the right questions and showed genuine concern: Elijah Cummings, Eleanor Holmes Norton, and Danny Davis. But here’s what I’m left with at least today.
Rory is sick. She struggles with autism every day. She has health issues, seemingly connected to autism, but we can’t know for sure. We do know that many other children with autism have the same problems.
Nothing related to autism is covered by insurance. Not speech therapy. She barely speaks but insurance won’t cover it. Not occupational therapy. She can barely hold a crayon, but no. Developmental pediatrician visits to oversee her care? No coverage. Her immune system is the pits. IVIG? No coverage because it’s experimental. ABA, the only technique with any science behind it showing that it helps children with autism? Also considered experimental by insurance companies. Thank God she gets most of these services in Montgomery County schools. Other people aren’t so lucky.
She’s barely slept in two weeks because her compulsions are so strong. That’s not exactly the best way to hope for better school performance. She has bad days and then has amazing days. When we realized that she might be having trouble with yeast, the first few days on the diflucan were like she had come out of a coma. Now, she’s back to where she was before. What on earth is going on with her body?
She has days where she doesn’t talk and seems to just hum and then other days where she conveys that she completely understands the concept of forgiveness and communicates that to her religious ed teacher.Why is her cholesterol so low? Why is the folate levels so low in her brain fluid but fine in her blood? Why is PANDAS kicking her butt but her immune tests come back just fine. Why do so many children with autism also have PANDAS? Now possibly GI issues along with all the other kids who struggle with them as well.
Autism, medical problems, insurance covers nothing despite a great health plan. We’re one of the lucky ones and it’s still insanity.
I want to scream. Don’t make me be like those AIDS activists and get naked and march into John Boehner’s office.
Rory is sick and suffering and so are many other kids like her. It shouldn’t bee this hard.
… is one week from today! Go here to register.
Summer is ending, and that means it’s time for us to start preparing for one of the biggest highlights of autumn: the National Walk Now for Autism Speaks is just around the corner.
Rory continues to be magical and mysterious every day. She is an absolute joy in our lives. Her musical gifts continue to amaze us. She sings heartily and always in key. She sings the harmonies in songs, and sometimes just makes up her own harmony. She’s become quite the little movie maker, filming snippets on Bob’s iPhone and coming up with new and creative ways to photograph herself. She loves school and has continues to do well on the programs the school devises for her. She’s observant and catches on quickly. She’s hard-headed, feisty, and incredibly funny.
2011 has been an interesting year, one of ups and downs for little Rory. In late winter, the school system was considering placing her in a learning center. This would mean larger class size and a greater student to teacher ratio. However, four cases of strep throat significantly set her back. She started developing new obsessive-compulsive behaviors and her tantruming increased significantly. Diagnosis was hampered because Rory isn’t completely verbal, so she can’t always tell us when she is not feeling well. As a result, Rory was placed in an elementary school autism program. She continues to be in a small class with a 1:1 student teacher ratio. It’s been a step back, but Rory has amazing teachers. She’s in good hands.
We had some promising news this year as well. Rory is part of an autism study at NIH. We learned that the results of her baseline MRI showed that she had low folate in her cerebral spinal fluid. Back in 2009, this was interesting but not particularly meaningful. In 2011, it means something new and very exciting. Over the over 120 children in this study, 13 have low folate levels in their CSF. Other studies have shown that when children with autism are supplements or medicine to boost their folate in their CSF, there has been “partial to total clinical recovery” in many children. It’s incredible. I could barely believe it when I heard it. Rory will participate in another study later this year to see if they can boost the folate levels. Maybe we will see improvements. Maybe not. But it’s so exciting to see how much progress has been made in autism research in just a few short years!
And this is exactly why we walk. Autism Speaks funds studies all over the world. They award grants to finance important, promising studies and also fund larger initiatives and clinical programs like the Autism Genome Project and the Autism Treatment Network. The money Rory’s Rovers raises go to projects like these and also to raise awareness worldwide. Because the more people know, the sooner parents and caregivers see the signs, the earlier the diagnosis and intervention!
Rory was diagnosed almost 4 years ago, and we’ve seen incredible progress. We are lucky to live in a place with great schools and access to incredible services. And we are blessed to have the support of our friends and family, who not only love Rory but support our efforts to raise money for Autism Speaks. Together, we can find the missing pieces.
If you would like to donate, go here:
or here to make a general team donation:
I love this.