Why I'm Directing “Saving Zero”
Beyond the Disability

Walking in Quicksand on The Cost of Rejecting a Cure for Autism

NOTE: Thanks to Ashlynn for allowing us to excerpt her blog post below.  I agree with her almost completely. In America, we reject cures every day of the week, because treatments make money for pharma, profit based hospitals, etc.  However, most diseases and chronic diagnoses are at least given the pretense of seeking a cure - Susan G. Komen comes to mind. Thanks, Ashlynn.  K

Read the full post at Walking in Quicksand here. Denied stamp

In the United States, an estimated $262 billion per year is spent on care and services for people with autism. This number does not include social security and benefit payments. If the startling trend of better diagnosis increased autism rates continues, care of individuals with autism in the United States will exceed one trillion dollars per year before we know it.

The staggering costs associated with caring for people with autism starkly contrast the limited and wasteful funds spent on autism research each year. Roughly $300 million is spent on autism research yearly, 75% of which is paid for by the Federal government.

This means that over $800 is spent caring for people with autism for every dollar spent researching autism. Of course, what constitutes autism research is broad and a great deal of it focuses not on relief from symptoms or preventing autism in the first place, but on genetics, validating the usefulness of applied behavioral analysis, and casting blame on fat moms and old dads. In fact, the research to date has been so underwhelming that the best tips WebMD can come up with for preventing autism are: live healthy, don’t take drugs during pregnancy, avoid alcohol, seek treatment for existing health conditions, and get vaccinated.

While neurodiversity proponents vilify people who want a cure, parents lose sleep over who will provide proper care for their autistic children when they die. With many autistics having no chance of partnering or starting their own families, parents rightly worry what will happen when their children are left in a world without a single person who loves them. The darker side of autism is habitually glossed over in any debate about how money should be spent to help people with autism. Families fight for the welfare of children and teens held in four point restraints in emergency rooms for weeks at a time as they wait for an opening at a facility that can marginally manage their needs. Meanwhile, a vocal minority that remains without empathy for the suffering the rest of the spectrum endures, continues to condemn those of us who want better for our kids.

Actively fighting against relief from the symptoms of autism is more than just cruel. It’s financially unsustainable.

Comments

David Weiner

@Aimee,

I share your concern about how organizations like Autism Speaks are squandering the money that they raise.

The fact that government squanders its autism research funds, though terrible, is only part of the problem. When government is spending a lot of money on research (for autism, cancer, or what have you), a lot of people are going to think that we are doing everything possible to overcome the problem at hand. They are going to believe that they don't need to contribute money on their own or think about what type of research ought to be supported. In other words, it gives people a false sense of reassurance and in that way blocks more productive research. It would be far better if everyone realized that the government was doing NOTHING for autism research and it was up to us to make it happen. Not to mention that when government takes less of our money, it frees up more funds for people to use to donate themselves.

Aimee Doyle

@David -

I certainly agree that the government money could be spent more productively. I have been proactive in contacting my senators and representatives about the deficiencies of the IACC. More of us need to do this.

I also agree that more private funding would be good. But I look at some of the autism organizations that have substantial private funding (Autism Research Institute and Autism Speaks) and I don't see them doing the kind of research that needs to be done either - partly because they've been co-opted by the neurodiversity movement. Even Generation Rescue - which hasn't been co-opted doesn't seem to have the amount of funding needed to do the research that needs to be done. Although they do a great job with what they have. I also seem to remember that there was a campaign on AoA a few years back (or at least discussion of one) regarding getting private donations toward a vaxxed/non-vaxxed study. Nothing came of it.

So I'm curious about how you see private funding as being the solution? And believe me, I would love a solution! I want a cure for all those with autism who want a cure.

David Weiner

I agree that more resources need to be devoted to finding a cure for autism and better treatment options, I do not want government to spend 1 more cent on it. In fact, it should not spend any money on it. We should recognize how counterproductive such spending is and rely upon voluntary funding instead to produce valuable research.

Tim Lundeen

I loved the webMD tip to "get vaccinated". Wonder who funds them...

Given that we currently spend an estimated $262 billion per year on care and services for people with autism. With autism rates doubling every 6 years, the cost is also increasing exponentially. This is not sustainable -- on current trend, we are destroying our civilization.

Not to mention the "less serious" conditions of ADHD, dyslexia, seizures, auto-immune illness, asthma, severe food allergies, obesity that affect over half of our kids, which also are caused by environmental triggers. Eliminating the environmental triggers for autism would have the benefit of dramatically increasing the overall health of our kids.

How bad does it have to get before people wake up? When will it be too late, assuming we haven't already passed that point?

Angus Files

An ex surgeon who is in complete denial about the vaccine autism link and his wife who disagrees with him.They are both aged closer 80 ish (notice I am avoiding saying old these days as I am fast catching up) have a son in his 40`s who is severely autistic but has a small bit of communication.He lives in a flat with 24hr care and carers in a relay team taking him out and doing everything for him or with him with supervision and is never left un supervised ever.Every year the gig falls through the floor and he cant be cared for in his flat so where does he end up back at his mothers and fathers,It just beggars belief what is going to happen when they are no longer about.The mother would have kept him at home over the years but as she said we cant have the surgeons delusion interrupted as he wouldn't be able to retire in peace and share his dodgy medical secrets with other like minded dodgy retired pharma prostitutes in there dodgy pharma retired neighborhood if he did agree it was Pharma vaccines..

Pharma For Prison

MMR RIP

go Trump

Looks like the holiday season has arrived, most of us do not have this one...

Distroller Toys - Adopting & Caring for Neonate Baby : Shots, Diaper Change, Cut Cord - Titi

https://www.youtube.com/watch?v=e3YfDiW99aM&feature=share

bob moffit

From the article:

"The staggering costs associated with caring for people with autism starkly contrast the limited and wasteful funds spent on autism research each year. Roughly $300 million is spent on autism research yearly, 75% of which is paid for by the Federal government.

This means that over $800 is spent caring for people with autism for every dollar spent researching autism. Of course, what constitutes autism research is broad and a great deal of it focuses not on relief from symptoms or preventing autism in the first place, but on genetics, validating the usefulness of applied behavioral analysis, and casting blame on fat moms and old dads"

Perhaps those responsible for "funding" autism research should take note of newly installed EPA director .. Scott Pruitt .. who issued following change in his agency's policies regarding the funding of scientific research:

"Scientists receiving grants from the U.S. Environmental Protection Agency (EPA) in Washington, D.C., many of them leading university researchers, are being purged from the agency’s advisory boards. The move, announced today by EPA Administrator Scott Pruitt, bars scientists from serving on these boards if they are now receiving money through an agency grant. It marks a major change in who can serve on the committees, which help steer EPA research and regulations by providing input on scientific questions.?"

I think HHS & CDC should adopt a similar "purge" of vaccine advisory boards .. where those serving have .. for decades .. "helped steer autism research into non-productive areas" .. such as .. genetics.

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