Autism's Financial Frustrations

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I spent a good amount of time this morning talking to a parent who is beyond stressed with autism's financial frustrations. She has 5 children, 3 of whom have non-verbal autism. I can't even begin to imagine what she goes through on a given day, as most families I know dealing with one child on the spectrum are overwhelmed, financially and otherwise! As we talked, it became more and more clear to me that there is going to have to be some different kind of major grass roots movement to change this myopic autism culture we live in.

This parent is EXHAUSTED! Not that most are not, but she is the perfect example of what is happening to families struggling with autism, who just fall through the cracks because of the lack of funding available to cover the interventions her children so desperately need.

She started out with biomedical and dietary intervention with all 3 of her children. The progress they have made in a very short time has been remarkable, yet they still have a long way to go. She pooled funds, begged family and friends to help, participated in fundraising drives, all in an effort to access funds to help her children, yet with the economy in the toilet, it just has not quite been enough to meet those ongoing monthly needs. Here's where it gets difficult. Now, she is more determined than ever to insure her children have access to the very things that she sees are effectively reaching them, yet the funding is not there to consistently continue those protocols.

As a parent, this has to be one of the most frustrating things to live through. Knowing what to do to help your child get better, seeing those very things available and within reach, yet having those doors slammed shut in your face because you are not wealthy enough to access them. My God, what is wrong with this picture?

Insurance is typically not covering the necessary testing to identify the underlying etiological issues, that once treated, often yield incredible improvements and/or recovery. Insurance is also not usually covering the visits to the medical doctors who are treating these children, or the necessary, daily supplements and treatments, even when scientific testing shows the deficiencies and medical needs for such.

So just like the elderly who find themselves in the quandary of trying to determine whether to eat or afford their necessary medications, families dealing with autism also wrestle with like decisions. Often, those decisions are the hinge that dictates whether or not these children will live an independent life and be contributors to our economy, or will be required to live long-term in the care of others at an enormous, yet unnecessary, expense of $4+ million per individual over their life span. Guess who will be paying that bill? Not to mention the quality of life issues that hangs in the balance as well.

I can't help but question at what point our society will cry out and demand something different be done about this epidemic issue that is quite frankly about to bite our economy in the butt in a way never seen before. Yet there remains only a rising rumble, that's all too often hushed at the hands of the mighty green dollar and the profit potential forecasted.

I have personally spoken to State and US Representatives who have flat out told me they 100% agree with everything we are saying about the current autism dilemma, the need for legislative mandates, autism insurance reform, changes in the school system tactics, accessibility to appropriate interventions, biomedical research, and more. Yet the cry is met with responses such as, "Although I understand the weight of the situation, I'm up for re-election this term and there are other issues I have to address if I am to get re-elected."

Myopic was the word I used earlier, and oh how appropriate that word is! We are currently trading in the lives of a significant generation of children who desperately need help, and can often recover when that help is available, in order to save face with the very constituents who don't currently realize they will be paying heavily in the long run for these faulty decision.

Someone please do the math here and spread the word throughout our communities! 1 in 150 individuals being diagnosed with full blown autism. THIS IS CRAZY! Yes, a few hundred thousand per child will have to be spent on the front end for some children to help them become indistinguishable from their peers, but in comparison to $4+ million per individual which WILL have to be spent, Hmmmm... wonder which way we should go? Make no mistake, this WILL bankrupt our economy if something is not changed, and soon!

Yes, I know I sound a little angry, but quite honestly I am! If this were any other disorder other than the politically charged, red-headed step child autism, we would not even be having this conversation.

Wake up America! The principle of sowing and reaping lives strong. The harvesters in this country (Yep - that's us, the average American citizens!) are being lulled into a sound slumber. Only we won't know the full consequences of our sleep, until we awaken hungry with the realization we forgot to sow our crops and there is no food.

I can only hope and pray that something changes, and soon, for these children who are brilliant beyond imagination and should be full of hope. I for one am committed to joining forces with anyone who wants to help get this grass roots movement off the ground and running at an unstoppable, full speed. Though it's been started many times before, the efforts often fizzle with the splintering of our autism community. Come on gang, we agree on much more than we disagree, and after all, it's not about us and our beliefs, it's about the kids! Right?

Who's on board?

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