Autism: God, seriously WTF?

I swear to you that if one more person tells me that God gave me an autistic child for a reason, I will go batshit crazy. That makes absolutely no sense to me. I'm not going to get philosophical about it, but suffice to say (I believe) not everything has to have a reason or higher purpose. I consider my religiosity to be in the moderate to severe range. ;) I live a prayerful life, I try to act in a Christian manner, I was born and raised and still am a practicing Catholic. So how does it all fit? I really don't know. Whole books have been written on the topic of God and Autism. Not that I've read them, and I probably won't get around to it. (By the way, does it scare anyone else that there is a whole bookcase devoted to Autism books in Borders?)

I have asked the question "why?" many times but usually it's because I really want the answer so I can help Ben get better. Very rarely have I entertained the "why me? why ben? why us?" questions. I don't feel that I need an answer to that. But I still am reserving my right to pity parties.

What does it take to get a little respect? Where respect equals alarm.

Here is a comment I posted on a story about young boy with autism who was not able to access necessary and life-saving treatment for his medical condition. Disgusting. What if this was a kid with cancer that was sitting in that chair waiting for his treatment for over a week?

Here’s a big question: Is this what it takes? What does it take for people to start panicking? Autism is a national health emergency. This kid had public insurance, health care reform won’t stop this from happening. This is about autism and how in 15 years there won’t be anywhere for our kids to go. The federal and state governments cannot handle supporting the ever increasing numbers of people with autism. Scientists and doctors continue to feign exasperation while doing million dollar eye gaze studies, meanwhile our numbers are exploding out of control. I will say again what I’ve said many times before- I support research into causes, prevention, treatment, and potentially a cure for this devastating medical disease that literally stole my son’s life away. Don’t misunderstand, I will continue to advocate for services and supports- my child will certainly need those forever. But only focusing on supports and services is like attempting to stop up the new orleans levees with bubble gum.

Autism organizations need to get real, get out there and start flipping out about these numbers. ASNC hasn’t even changed its website to reflect the latest numbers. We should be out there shouting it from the rooftops. We should bring our kids. We should tell people- autism is not a psychiatric condition- it is a multi-system illness that deserves dedicated wings of hospitals to treat. True autism insurance reform is meaningless unless we can have treatments that help our kids get better. (Though I’m disgusted daily that my husband works for UNC hospitals and the insurance they provide does not cover evidence-based treatments for my son’s medical condition.)

No, I refuse to support more tax increases. I did that last year and they paraded our kids around saying “we need to help poor people with disabilities blah blah blah” and then they slammed our community with the biggest hit. Until these legislators can show some more fiscal responsibility to fund things that matter, then I will not support me paying more when people with disabilities get less.