Amanda Copeland on "The Autism Underground" on HuffPo

Managing Editor's Note: This is a terrific post on HuffPo about finding the "autism underground" and finally getting treatment for your child. Please pop over and comment, won't you? Thanks. Kim

Click HERE.

...Notice, dear friends, that this dawning of realization came to me surreptitiously, through the Autism Underground, a place filled with pioneering parents and doctors willing to take professional risks to save our children. It sounds dark and forbidden and mysterious, as the medical establishment may actually want it to sound, to scare parents away from seeking treatment, at any cost. But as autism parents, even in the age where autism pervades our population at a rate 10,000 times what is was in 1985, we remain in the position of having to find help for our children through this underground.

I put Lila on the gluten and casein free diet (another story of heroism we autism parents undertake universally) and took her to see Dr. Sears after over a month of waiting to get off his waiting list. The cost of that consult was my first staggering blow, and I sold photography equipment and used our rent money to pay for it...

Comments

[Amanda Copeland]

Hey Kim, thanks for posting this in your blog. Thanks to all who have taken a moment to read about the autism underground, a place where we families struggling with autism live in constant battle to help our dear children.

President Obama has EXCLUDED autism from his national plan. I urge everyone, and anyone, who cares about any individual with autism to oppose the plan until it FULLY funds all autism treatments RX's by a treating physician. No exceptions.

To the individual writing about Indiana, the coverage you describe is not the coverage our children require. In fact, your school district, under IDEA should be paying the 100K a year for your ABA.

Medical insurance must be legally mandated to cover biomedical treatment for autistic children. No state except Arizona, in our great country does this. I am mistaken about some things, but when it comes to laws affecting autism, I have yet to be mistaken.

People, create a sea change for autism and refuse anything less than total coverage for biomedical treatments for our children.

I post afresh on Huff at least once monthly, please come back and see me again! With Love. Amanda

[Jimsomnia]

Jessica F, you need to understand that your comment illustrates a classic example of the "divide and conquer" strategy of the insurance lobby. All the "insurance reform" bills passed or proposed in recent months are for ABA ONLY! I am not aware of a single state that is mandating payment for biomed medical expenses or DAN doctors.

Unfortunately, many well-meaning advocates are trumpeting coverage for ABA as a great triumph for "alternative" treatment coverage. Both the advocates and the insurance lobby (and Autism Speaks, I'm afraid) refer to this as "scientifically proven" or "science-based" treatment, which sounds good until you realize it separates ABA from medical treatments, which are still regarded as quack-science. This is exactly what happened in Oregon a few months ago. The Oregon bill, which didn't even make it to a vote, was only for ABA therapy, and was based on the Indiana model and others. I had many conversations with hard-working advocates who had to admit that coverage for the expensive treatments we are doing would still not be covered, but this was a "first step."

Bull!

The only step here is that the insurance lobby has co-opted the advocacy movement into settling for a severely scaled-back gain and ABA therapists will be required to go through an expensive licensing process, reducing the number of therapists available and therefore the amount of benefits paid. When we want more in the future, the insurance lobby will make it look like we're never satisfied and uniformed voters won't know the difference because they're not informed on this complicated issue.

You need to understand the nature of this political battle and the language used to fight it. It's all about power and money.

[Tammy]

We make a lot of sacrifices for our children. A lot of people don't realize the amount of money we put out from our own pockets. They assume the government is paying for it all.

[David Taylor]

Thanks for the heads up on Amanda's powerful writing. Here is the post I left--

==

Amanda--

Thank you for capturing in words the emotional free fall when your child is given the autism diagnosis--one of those moments in life that a person will always remember in the most infinite detail.

But you took that pain and stuffed it into the furnace of your will to help Lila. I hope everyone reading understands and appreciates the courage, strength and endless love that you and other autism moms display.

Our story of recovery: Daniel was two when first diagnosed. Like you, I went to the internet to find anything that could help. I also will never forget the night I first read the word "thimerosal" on my computer screen. A few links later and the tunnel into the autism underground opened wide.

We found our way to probably the same Florida autism specialist you did. That doctor is one of the most courageous men I have ever known. He recovered our son over the course of six years--And let that be a lesson to others to never give up.

Like you, the financial costs have been absurd--but freeing in a way. You realize that *nothing* else matters but your child's recovery from their injuries.

We are now Rescue Angels for Generation Rescue. We speak to parent groups. Our son's former therapists invite parents of newly diagnosed children to observe him to show what is possible today.

Our love and blessings to all in the autism underground. It grows brighter by the day.

[Jessica F.]

Great article, except Amanda is mistaken about insurance coverage for a few states....

"You may or may not know that autism is legally excluded from medical insurance coverage in the United States (in every state except Arizona, whose legislature forced insurance companies to cover autism starting in 2008)."

Indiana has an Insurance Mandate for Autism (Indiana Code 27-8-14.2) that has been around since 2001. If you get insurance through an Indiana based employer you are probably covered...it's got a few loopholes like anything else though. This mandate forces insurance companies to pay for ABA (with no caps) and many other biomed treatments. This year our insurance is going to pay out over $100k for ABA. Just an FYI.

[Gram P]

I have just read the article and thought maybe this is something that should be sent to the President. So this is what I wrote:

I am writing concerning the article in the Huffington Post by Amanda Copeland about her daughter who has Autism. This article was too large to be posted here. I am hoping that the President or his advisors are readers of the Huffington Post and can read the article that I am speaking of. It tells of the extremes that parents have to go through to finance treatment for their children with Autism. Why is Autism not treated as any other diease such as Cancer, Diabeties, etc. At the rate that Autism is progressing it will overcome many such dieases in number. I feel that Autism is more important than obesity....those people have a choice. Children with Autism DO NOT.

As a Grandmother to two (2)grandchildren with Autism, I thought the President should read what one (1) family out of the thousands has to go through to provide therapy for their child. Health care reform is one of President Obama's # 1 priorities, but what about our children and grandchildren with Autism. President Obama's champaign promise was to provide insurance to cover Autism also, but has it been done? It has not even been mentioned. We are the voices that are shouting for these children who can't speak for themselves.....they need help...research needs more funding and insurance companies need to provide coverage so treatments can be obtained. My Grandchildren are the most precious little people in my life and I want to be able to provide help to them. If it takes writing to the President, using all of the funds that are available to me, or any other means of providing them the therapy they need I will be there for them. So should the Government of the United States.