What's the Hold Up? Private Donation For Autism Research

Start here by watching this powerful video made by a loving father who obviously cares very much about his daughter, her condition, and her recovery.  A man on a mission.

Here are some highlights, from the video, that I've typed out for you:

  • 1 in 110 children will be diagnosed with Autism Spectrum Disorder (ASD) this year.
  • More kids will be diagnosed this year with ASD than AIDS, Diabetes, and Cancer combined.
Yet private donation totals remain lower than less prevalent conditions; for example:
  • Leukemia affects 1 in 1,200 Funding: 277 million
  • Muscular Dystrophy affects 1 in 100,000 Funding: 162 million
  • Pediatric AIDS affects 1 in 300 Funding: 394 million
  • Juvenile Diabetes affects 1 in 500 Funding: 156 million
  • Autism affects 1 in 110 Funding: 79 million
  • Autism research received .6% of the total annual budget of National Institute of Health in 2010.
So why do I think this is?  Some people won't like what I have to say.  If that's the case, I think it will largely have to do with me not wording myself right- let me throw that out here now. 

I think that any illness or disease that threatens life or quality of life is sad.  Especially when it strikes against helpless, innocent children.  I think some people would argue that funding some diseases are more important than others because they are "life threatening".  People that don't live with Autism in their homes day in and out, don't realize that (in my opinion) ASD is also life threatening in a way.  A young brain could potentially be "unlocked", but it remains "locked" because the answers, research, or therapy are unavailable.  Having a working mind that is locked up and unable to express much is like having a life sentence.  It is a life sentence for the person with ASD, and likely a life time of stress for the caregiver (even if the person with ASD is an absolute joy to the caregiver overall). It must be added that there are life and death consequences even if indirectly; wandering, increased depression rates & suicidal thoughts, as well as other dangers.

Now, while I am glad my son has Autism instead of a possibly deadly cancer, it doesn't mean that it is less important.  I am in a fortunate insurance situation, but many are not.  Theoretically, if my son had cancer, his surgeries and therapies would be mostly covered by insurance.  I get that not all insurance is a perfect dream: there are co-pays, cost shares, deductibles.  I realize people who loose their insurance after receiving diagnoses of diseases and disorders will have a hard time becoming insured in the future.  I also realize that insurances cover more of those treatments because they are life and death.  I mean that in another way as well as literally.  In my opinion, they are business people above being philanthropists (as a whole company); they know that one way or the other it is not a lifetime of treatments.  And even if someone does have a recurrence, there is a chance they won't be covering them for any number of reasons.  So in any case, they are not looking at paying for treatment week after week, year after year, with no end in sight. 

But parents of autism pay.  Parents pay everyday.  They pay insurance co-pays.  They pay out-of-pocket for whatever therapies they can afford.  They pay in time spent fighting insurance companies.  They pay in stressful hours of practicing therapeutic strategies.  They pay in sleepless nights about mounting debt from covering therapies.  They pay in feelings of guilt for not being able to pay for therapies.  The list goes on.

But you know what my big point is with that run-on (sorry, I am absolutely unable to make a clear concise point)?  That leaves very little left in the pockets of parents to donate privately toward autism research & therapy.  If my son had juvenile diabetes, I'd feel grief stricken and stressed.  But so long as I was insured, their medical bills and insulin would be covered, and I would throw all of my spare money at research for juvenile diabetes.  Parents of children with Autism have to have the same stress of worrying about their child; worrying about ever loosing insurance coverage.  Yet they do this with out the slight hope that may accompany being able to throw whatever they can at research donations because they are spending it on ABA therapy instead.  There is often no point of, "OK they are recovered fully/in remission/regulated & stable, now we have extra money to donate".

There is no cure for cancer, there is no cure for diabetes, there is no cure for autism.  We are all searching though.  Personally, I don't want to "cure" my son, but I would love to unlock his mind the most that I can and take away pain or discomfort caused by autism.  Living with ADD myself and having sensory issues, I know it is hard.  To imagine it may be that much harder for him, yet he can not fully explain it is heart-wrenching.  I'd want to "fix" his ability to be able to tell me what he needs, wants, loves, and hates.  I want to get to the core of the beautiful boy he is and make it easy for him to share it with the world.  I want him to be safe.  I want him to be "the best Kekito he can be".

I seem to have always looked at donating to research as something I can't afford. I guess because I can't donate as much as I'd like in a one lump sum?  But fundraising for The Susan G. Komen Foundation recently helped me realize that the same thought could be applied to my donating in Autism research- Every dollar adds up.  I am not rich (by America's standard's ;)) and probably never will be.  But really, I can still manage to make a small donation from every check with out feeling it.  Because I am not in as unfortunate of a position as far as insurance goes (and even as far as my son's needs), I think it's something I should absolutely do without any doubt.  While I cannot donate a large sum right now, I can surely manage a few dollars a month and still feed my children healthy food and give them clean water to drink.  That's a lot better already than many world citizens. 

I know not everyone reading this believes in The Bible, but even so, I think this is worth reading:

Proverbs 3:27
Do not withhold good from those to whom it is due, when it is in your power to do it.

I know not everyone is in this position.  I am grateful that I am.  I know that all diseases and disorders need funding and research.  But Autism is only growing bigger and bigger.  An investment in research or treatment is an investment in our future as a world society.  Many autistic minds are brilliant (even when it is hidden and locked away deep inside), or capable of so much more if they are only helped earlier.  I am not proposing we need to change our children, but merely to help them.  Reduce the struggles and pain that we can, unlock the brilliant minds that may very well hold the ability to find that holy grail: the cure for cancer.  If we look at our world as a big picture thinker, we can see this surely deserves at least proportionately larger funds.

Please consider, whether you live with autism affecting your life or not, if you are able to donate even a dollar a month.  If you are fortunate enough not to have a love one affected by it yet, remember that the rate is 1 in 110 and growing.  In your next generation, or in the lives of loved ones you have yet to meet, there may well be autism.  A dollar a month is an investment in their future.

I know I am probably driving everyone nuts writing and posting like crazy this month about donating money.  But as far as breast cancer goes, it is October, and with this I just feel the burden to speak out about it laying heavy on my heart.  It's just something I hope you will think about over the next year.

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