It's very frustrating because each state is completely different. Here in NV, in the past insurance companies have not been required to provide coverage for Autism related anything but that is supposedly changing starting in 2011. In fact the second our son received his official diagnosis our insurance company did everything they could to drop us. (That would be ANTHEM BC/BS) We also found it almost impossible to find a pediatrician that would take our son as a patient once I said the word Autism.
Why doesn't my child deserve to be seen by a doctor when he gets a cold or a rash or sprains his ankle? He's not a leper people he's a little boy who laughs and plays and climbs trees and jumps in mud puddles like any other little boy he just can't communicate the same way.
Here in Nevada the average OUT OF POCKET costs for Autism therapies run between 1,500 - 3K a MONTH. That is over and above the $1,500.00 you can get in assistance from the state after waiting for months and months sometimes over a year, and only if you qualify.
I don't know very many people who just happen to have an extra three thousand dollars lying around each month. I have met so many families who have depleted their savings, had to take out 2nd mortgages, sell their homes and their belongings, take out home equity loans just to try and cover their child's therapy. Unless you are independently wealthy or a celebrity: Autism can bankrupt an average family in less than 3 years, not just financially either, it bankrupts you emotionally and takes a huge toll on your health from all the stress.
My husband and I did nothing wrong, we were not irresponsible with our money. Even with the help of our families in less than 2 years we have depleted our savings. We go without things like health and dental care for ourselves and have pretty much sold anything we owned of any value in order to help cover our sons therapy costs. We would do it again in a heartbeat because it's the right thing to do. We went from being a couple of spoiled middle class kids to having to literally count pennies out of necessity. Believe it or not in spite of everything compared to a lot of other families; we're actually doing OK. There are people in far worse situations than we are and even though it may not sound like it; we're very grateful for the things we do have... a roof over our heads in a good neighborhood, power, water, food, a car and most importantly; we have a healthy and seemingly happy little boy. He's not dying from anything, he's not physically crippled, he makes us laugh. After a few close calls we even still have each other and that says a lot.
THIS IS NOT A "POOR US, BOO HOO" speech. Believe me the last thing we want is any one's pity. I mention all this stuff because I think most Autism Families that are struggling to find the balance in all the craziness that ensues once Autism has entered their lives just want to be acknowledged plain and simple. It just seems like we don't exist to the rest of the world.
Americans have a "We've got our own problems" mentality that is really unsettling. Society has somehow put an unsaid yet implied and unfair restriction on our families to not talk about it; instead we're supposed to act as though everything is still great even though we are going through hell just because it makes people uncomfortable or annoyed to hear about our situation.
Believe me I get that everywhere you turn there is a commercial message about Autism or someone is in your face trying to raise money or awareness for Autism, heck even I get sick of hearing about it. What I'm talking about is not all the statistical facts that get thrown at you right and left. I'm talking about the thousands of people throughout our country who are exhausted, overwhelmed, who's hearts are breaking, who are trying to make the best of it, who are trying to stay positive in the face of such uncertainty; who do not need to be swept under the carpet, forgotten about, ignored and suddenly treated like lower class citizens because their priorities have had to change, people who've been tested to their limits and just need to know that other people do actually care.
It's really simple: If you know someone dealing with Autism in their family just listen and acknowledge what is happening to them instead of avoiding it. You don't have to understand, you don't have to offer to help, just listen and acknowledge. THANK YOU!
