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A Lifetime with Autism

Matthew_McConaughey_Kiehls_070917By Cathy Jameson

Matthew McConaughey is promoting autism awareness.  Several big news sources have picked up his video and are encouraging us to share the link.  In the short clip, McConaughey states that there are over 70 million people living with autism and that children with autism need our support.  Specifically, they need an early diagnosis and access to services.  Teaming up with a company named Kiehl’s, McConaughey wants to give these kids a real chance.  Sharing the video can help make that happen.  For every share, a $1 donation will be made to Autism Speaks.  With this campaign, McConaughey hopes to make a lifetime of difference. 

It sounds very, very sweet, but the donations will cap at just $200,000

200,000. 

That’s it? 

I’m not complaining. 

Alright, alright, alright! 

I am. 

Sorry. 

Let me try again. 

Thanks, Matthew?   

McConaughey’s final thought in that video, that’s he’s hoping to make a lifetime of difference, is what’s making me more cynical than hopeful.  A lifetime of difference.  What a perfect phrase for what I had hoped for my child compared to what actually became his reality.  Autism became his reality, and it’s not the kind that you see happily portrayed in the news or on television. 

I don’t know too much about McConaughey’s children, but I would venture a guess that he’s not the parent of a severely affected child with autism like I am.  I’d also venture a guess that his perception of autism is a far cry from the autism reality that my family lives.  Until he meets us, which I’d be more than happy to have happen, he and other Hollywood celebs focusing only on awareness, will never know how expensive and difficult life is for families like mine.  It is expensive, and some days, life with autism is very difficult. 

Difficulties aside, it costs quite a bit to care for a child with autism.  According to Autism Speaks in 2014, it’s $1.4 million over a lifetime.  CNN Money offered a higher figure of $2.4 million when an intellectual disability existed. 

I haven’t done the math for Ronan’s care in a while, but if I had to offer an estimated figure on paper of what it costs for just one year to keep him healthy, safe, and alive (remember, he’s prone to wander), that cost is about $100,000.  Anti-seizure medications, doctor appointments, co-pays, weekly therapy appointments, and respite add up.  Not included in that figure are the supplements he takes or the allergen-free foods that Ronan eats or the diapering supplies he requires.  We’re blessed with some insurance coverage, but we pay the must-haves on our own, too.  And when we can’t pay those out-of-pocket expenses ourselves, because sometimes we just can’t, the generosity of kind souls have helped us make ends meet. 

I’m in awe that we’ve survived paying for everything for as long as we have.  When money is really tight, we look for grants to help pay for Ronan’s needs including alternate therapies and medically necessary equipment that insurance companies refuse to recognize and cover.  I’m grateful for grants and for the organizations who offer direct assistance to individuals with autism.  I’m extra thankful when help comes from another autism mom on the other side of the phone!  We’ve gotten the most support from the National Autism Association. When I called them years ago, they recognized that I had a great need.  Stepping in quickly, they did not stop their efforts until I had secured the help my son and my family needed. Run by autism parents, the NAA knew exactly what a mom like me truly needed. 

They may be small compared to Autism Speaks, but the NAA does big things for everyday families like mine.  Autism Speaks isn’t like NAA or some of the other autism organizations.  True, they are one of the biggest.  But if you ask me, bigger doesn’t always mean better.  Bigger costs more.  Bigger wants more…more limelight, more recognition, more press.  Bigger tends to step on the small to get what it wants…which could be more limelight, more recognition, and more press.  The smaller orgs, like Generation Rescue and TACA,  are much, much smaller like NAA is, but I find that they, too, do much, much more for families like mine with a fraction of the manpower and the funding.  

McConaughey doesn’t say where the funds he’s helping raise are going to go, but let’s say it will go directly to the that 70 million he mentions.  If it’s shared with each of those individuals, their cut would be $0.002.  That’s it.  I’d love to ask specific questions like who’s going to get the money?  When is that going to happen?  Will there be stipulations?  Can funds go toward dietary intervention, biomedical intervention, or alternative medical treatment not usually covered by insurance?  Or can it be earmarked for a later date?  I don’t like to think about it, but when Ronan ages out of all things pediatric, and when my husband and I get too old or are physically unable to care for him, we will have to look for a long-term place for him.  I cannot even fathom how much long-term care is going to cost.  Since that could be a reality for us, I am starting to look for more information on what kind of options we will have.  I like what The Autism Trust is doing and will keep them in mind for long-term care should that need arise.  Homebased in Texas, maybe McConaughey and I can meet there to chat about autism and the toll it can take on a family.      

As mom of a severely affected child whose child’s benefits are in jeopardy (gal from the agency has still yet to call me back), I’m trying to be hopeful.  I’m trying to be positive.  I’m trying to be grateful when I see a public figure take on autism.  But I think this latest campaign misses the mark.  That said, I do believe that McConaughey’s efforts are genuine.  Those efforts very well could help someone somewhere.  Personally, I’d love to see that help go toward the smaller orgs who are knee-deep in autism reality like I am.  Regardless of where the funds do go, if the autism rate continues to rise, which I do believe it will, those 70+ million people already living with autism will need a lot more than $200,000.  They’re going to need so much more than that. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

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Aimee Doyle

Hello Almee Doyle.... "Since they stopped looking for a cure for autism, I don't think they deserve support." How about since they stopped looking for the CAUSE of autism? That would make more sense!!!

I agree that identifying the cause of autism, and preventing autism, is important. However, for those already injured (and this is quite a large group) I would like research toward a cure. A majority of those on the autism spectrum (like my son) are going to need lifelong care and support. Only a small minority of injured kids fully recover from autism, even with intensive biomedical intervention. So clearly we haven't figured out yet how to resolve the brain damage and heal the brain.

I know my son was vaccine injured, so I already know the cause. For him and me, it's about cure. And there's almost no research going into cure, or even into effective treatments and therapies, particularly for those on the more severe end of the spectrum.

John Stone

Tom

"$1.6m to $2.4m". You are of course talking about individual cases, not millions, but I fear a lot more than that.

http://www.ageofautism.com/2016/02/adult-autism-data-fabrication-in-the-united-kingdom-part-2.html

John

Tom Petrie

Hello Almee Doyle.... "Since they stopped looking for a cure for autism, I don't think they deserve support." How about since they stopped looking for the CAUSE of autism? That would make more sense!!!

IF a vaccine-injured child is PREVENTED that would save (for most patients that can't be that smart to do CF/DF diets, chelation and all the rest), some $1.6 to $2.4 million dollars, why not just promote "NO VACCINES"? That would appear to be the most propitious solution, really!

david m burd

McConaughey is a despicable con-man with his premise of 70 million Americans being on the autism spectrum. He clearly is pushing the LIE that autism has been common for decades, when in fact it has rocketed up from a couple in 10,000 to now 200+ in 10,000.

He's just another front for the murderous Vaccine Industry.

John Stone

Regarding Autism Speaks I wrote this post a couple of years ago:

http://www.ageofautism.com/2015/02/autism-speaks-sock-puppet-for-the-cdc.html

PS Of course, this represented the situation at the time of writing. Ring and Wang have departed, and Suzanne Wright has unfortunately died. I don't know what the final destiny of the consortium has been.

go Trump

OMG part of the profits from a hand cream going to support the endless search for the "Autism Gene" at Autism Speaks ??? They are the Rock Stars of Science.

Has everyone logged into the Autism Speaks genetic database of 3 billion DNA base pairs for 10,000 Autistic children and looked for the Autism gene ??

The DNA cheek swabs were Free ! We are all encouraged to help. Something to do during lunch with your phone.

Sadly, those who are really trying to help have been mocked by what is left of Science for over 20 years.

nhokkanen

Autism Speaks excels at PR, a facade designed to give the impression of substance.

Promoting autism awareness lets people feel as if they've done their part. Behind the calculated symbolic imagery is minimal effort producing minimal tangible results... if one looks closely enough. For the celebrity, it's on to the next cause du jour.

Meanwhile no donation money trickles down to the people actually living with autism's fallout -- pragmatic realists repeatedly demoralized by the waste, but not surprised by it.

Jeannette Bishop

I can see $200,000 given towards the next phase of the Mawson vaxxed unvaxxed study as making a big difference for a lifetime, probably several lifetimes. Donations towards what have been career blighting vaccine risk awareness campaigns, also. Maybe not so much benefit could be reaped for our already injured, except in potential contributions from a healthy upcoming generation towards the expensive care and possibly less expensive remedy for the already injured. Can we as a society afford to do anything else, if we can afford even the time for that?

Tom Petrie

Ok, $ 0.002857 rounds UP to 3/10ths of a penny, not 2 10ths, but seriously, a great article just the same. If EACH child costs a minimum of $1.4 to $2.4 million EACH--let's round out at $1.9 million each, that's $13.3 trillion! Another way of looking at it is this : What is required to care for these (mostly) vaccine injured children will be 66.5 million times MORE money than $200,000! Sixty-six million times more money? Yup.

In other words, this celebritys' efforts will do absolutely nothing. What will do a lot is for the whole stinin' mess that is our CDC vaccine schedule/program to be exposed for what it is: A massive crime.

I just heard that the "summer movie season" was a bust: NO blockbusters and the lowest "take" in years. Wow, if only "Vaxxed" or "Vaccines Revealed" were to have gotten screen play across America, we would have had a BOOMING "summer movie season," AND millions of uneducated adults across America could have become better educated on this issue and if just 68 parents screening one of these "movies" decided NOT to vaccinate their children as a result, some $1.4 to $2.4 MILLION could have been saved by that LESS vaccine-injured child. That's way more than $200,000. In short, way MORE can be achieved by not PRODUCING anymore vaccine injured children. Oh yeah, and Monsanto's Glyphosate needs also to be banned and Tylenol should NOT be prescribed to children with fever. Cold baths would be safer along with vitamin C.

Oh boy, education takes so much more work than some free publicity! Please Poul Thorsen, can we have that $1,000,000 back...one struggling parent could surely use this money! Could you please write your check to Cathy Jameson. That would be a good start!

Barry

I believe that this actor's involvement is sincere. I wish that he could read this article. Will he or his agents find it if his name isn't in the title?

********

When his 'awareness' campaign involves the public support of Dr. Andrew Wakefield, and/or the Vaxxed documentary movie, I will believe that his involvement is sincere.

Until then, I don't trust a God damn word he says.

Richard P. Milner

Autism Speaks is a diversion group. High salaries for administration. Funded research goes to the dead end of genetics when it is already known that APOE 4 from Dad and APOE 4 from Mom are extreme risk factors for injury from vaccination. And it is well established that the Mercury remaining in vaccines as synergistically enhanced by the Aluminium in them, is an efficient nerve poison, and that PolySorbate 80 in vaccines allows these and other toxins to cross the blood-barrier, and poison the brain. What more do we need to know?

Linda1

I believe that this actor's involvement is sincere. I wish that he could read this article. Will he or his agents find it if his name isn't in the title?

Barry

Large scale efforts to promote autism 'awareness', are just forms of controlled opposition.

They're basically just diversions, to keep people like us distracted. To keep us busy with things that appears to be steps in the right direction, but which never really amount to anything. Except of course to ensure that people like us are too distracted in the support of this nonsense, to bring the world closer to the truth that we all know.

Which is that vaccines did this to our children.

Aimee Doyle

I will never donate to Autism Speaks - since they stopped looking for a cure for autism, I don't think they deserve support. I have discouraged family and friends from donating to them, as well.

But even before they took cure out of their mission statement, the non-profit gave me serious reservations - extraordinarily high executive salaries, over-funding of genetic research, dismissal of the vaccine-autism connection.

I agree with Cathy - it's much better to donate to smaller organizations like NAA and TACA, which do a lot more with each dollar.

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