From ALS to Autism: Failure Isn’t the Enemy, Denial Is.

Managing Editor's Note: I have a dear friend who was diagnosed two years ago with ALS. He was told there is no treatment and no cure. He found a website called Patients Like Me, that offered info from patients, not doctors. He found a doc willing to run tests - and learned he was highly mercury toxic. The diagnosis center had given him yet another flu shot just last year. He's on the ALS equivalent of the DAN! protocol and has slowed the rate of descent. All because he didn't take "go away and die" for an answer. Familiar, indeed, Katie.  KS

By Katie Wright

Christian has had a horrible two weeks. He has begun to strike his head with closed fists. The self injurious behavior is bad enough but the inconsolable sobbing that follows is worse. We think Christian is suffering from severe headaches as a result of the sudden change in barometric pressure, but that is only a guess

As this was occurring I happened to hear on TV that it was Lou Gehrig day at Yankee Stadium. Derek Jeter was talking about how important it was to help find a cure for Lou Gehrig’s disease, also known as ALS. The little I know about ALS is that it is a horrible and fatal neurodegenerative disease. I saw a beautiful documentary on PBS last year called “So Far, So Fast” about 3 brothers, one with ALS, all working so hard to find a cure. I learned that most ALS sufferers do not have a family member with ALS and most researchers believe ALS is caused by a genetic predisposition triggered by environmental factors.  While doctors have gotten much better at recognizing and diagnosing ALS, there are almost no medical treatments. Sound familiar?

By now, I had a nauseous feeling and sat in front of the TV. The sportscaster then said that researchers have been looking for a cure to ALS for 70 years. 70 YEARS! 70 Years, and still so little progress?  Imagine 70 more years of autism with minimal progress? What the hell are we doing?

I know I say this all the time but we must change the course of autism research. We cannot go on like this- investing so heavily in projects that are redundant and incremental. Playing it safe has gotten us nowhere. The sense of institutional complacency and fear dominating much of the autism research agenda is appalling. Tom Insel played bait and switch with our research money. IACC is terrified of vaccine research, scared to death of having more truly representative public members and petrified of being held accountable for their unethical behavior.  What about our kids? Where are the breakthroughs? Where is our progress?

I was really happy to see Autism Speaks’ recent environmental research grants, but we need to move so much faster than we are. I read Eric London’s crazy rant of a resignation letter with amusement. What is he talking about when he accuses AS of spending too much money on vaccine research? They aren’t spending any! Well that is not entirely fair, AS does spend a miniscule amount of money on vaccine related research, like 2%.  Still that’s better than IACC, which spends 0%.

My point is that whatever we are doing has not been working well enough. That’s life; we learn from our mistakes and, hopefully, make different decisions going forward. This hysterical resistance to independent and authoritative vaccine research is a luxury we can no longer afford. For example, Bernadine Healey has repeatedly said she cannot understand why a simple vax/ unvax study has not been done. It would be relatively easy to do (we have a massive, heterogeneous and unvaccinated home schooled population in the U.S.) and could be done quickly. A year ago a broad coalition of autism orgs proposed a wonderfully comprehensive study on the effects of adjuvant combinations on the central nervous system. AS rejected the plan. Meanwhile, Tom Insel stripped the one tiny vaccine research study from the IACC agenda. This is totally fear driven insanity.

We took Christian to a neurologist yesterday and it all felt like a flashback to his initial diagnosis in 2004. Regression is mysterious, he has a mitochondrial disorder and metabolic abnormalities, no none of these runs in our family,…but yes autoimmune diseases do. The doctor was warm and gracious but there are still no answers and what’s worse, it feels like almost no one is looking for answers! Thanks to the many wonderful DAN! researchers and clinicians I understand the cause of Christian’s autism, but without a significant research investment in the triggers, effective treatments remain elusive.

Thank you to SafeMinds, the National Autism Association, Generation Rescue,  Thoughtful House, TACA, my parents and certain AS board members for trying so hard to fill this huge research gap. They have done wonderful work but cannot do this alone. Other orgs and governmental bodies need to face reality and start investing in the kind of research families want done: environmental and biomedical research that takes risks and answers the big questions.

Katie Wright is a Contributing Editor to Age of Autism.

 

Comments

[Lisa@taca]

God bless you Germane. Your service to our country is greatly appreciated. Thank you. I am so sorry that you acquired such a horrific illness.
We all are saddened by the continued losses due to profits. It continues to affect too many people from babies on up.
Keep fighting. We will too.

[Barbie Hines]

Katie:

Last Fall, our son went through a few months of violent outburst...hitting himself, hitting me...sometimes this would last for an hour at a time. He ended up on Biaxin...for a completely unrelated reason...and in three days, the behaviors were gone! Some of the other posts in this thread...Lymes, weather changes, candida, etc...all fit with possible reasons why the Biaxin is helping sooo much. We are continuing with low dose Biaxin treatment, and gains are coming. Don't get me wrong, we are still in a very severe place...but the pain is gone...and progress has resumed...while no one can truly detail exactly what this Biaxin is doing, I can certainly detail how wonderful it has been for my son. He is happy again! Hoping this could possibly relieve Christian's pain...I know how long those few months felt...my thoughts are with your family...keeping my fingers crossed for relief for your baby boy soon.

[Montana Berg]

Dear Katie;

Thanks for your info about ALS. It truly is one of the worst diseases one can get and it's shocking to realize just how little progress has been made in finding a cure. There is NO WAY that the illness is as rare as it is claimed to be. I am in the process of producing a documentary, directed by Academy Award-winning director John Zaritsky, featuring singer/songwriter/comedienne Carla Zilbersmith who has been crippled by ALS and faces her own extinction with wit, wisdom, courage, music and love.
We started working on this film early this year and it is absolutely amazing just how many ramdom people we have come accross who have someone with ALS in their circle of family and friends. It is an absolutely devastating disease where a positive attitude is in the end the only thing the patient has any control over. The uniqueness of Carla's story - and of Leave Them Laughing (working title of the film) - is not that she can laugh about her fate, but that she also, eloquently, teaches us how, and when, to cry. The film will premiere early next year.

[Stagmom for Germaine]

Germaine, thank you for your service and sacrifice. My Google alert turned up some sciencebloggish type ranting about what I said about ALS at the start of this post. Another fan! :)

KIM

[Benedetta Stilwell]

Germaine,
I am so very sorry. ALS is like autism, in that once it was never ever heard of and now it is commom.
I have two family members with ALS. My aunt won a law suite. She claimed that the silca -gel in a breast implant leaked and caused hers. My sister-in-law has it too, but she has no idea why she came down with it.
The medical science seems to be incrediblely slow on all these auto-immune diseases.

[autism is vaccine induced]

I think we all know why they keep calling autism a genetic disorder. Our new science advisor Mr. Holdren has some nice plans for all of us. Read up on his eugenics plan in his own words. They know what they are doing.

[Mo Durkin]

Headaches with change in weather can be due to lymph congestion. Lymph drainage has helped me greatly with this. A rebounder is great to facilitate lymph drainage and also great therapy. You can google for more information, but i believe this is a common problem with these kids and many of us NT ppl too.

[Germane Williams]

Katie i just read your post honestly by chance but was excited about the article and replies,you see it affects me deeply .I am a veteran of 1st gulf war and i suffer from als.I found out almost two years ago and I can no longer move or talk ,I have a computer that i use to communicate .Now I was one of the lucky ones,not in sense that the illness somehow spared me or that I show improvement ,lucky because they passed a law that gives vets with als benefits,this helps but in no way is an answer to the problem .Grateful for the assistance but we haven't done enough .I am getting worse and feel I wouldn't live long enough to see any significant progress .I found it interesting to hear one reader speak about people wanting all the fame of a cure,I can only pray their not the ones anyhow what would they make us do for it anyhow .Another reader spoke of fighting back ,I am a fighter by nature and don't want to stop because it would mean defeat .Slipping into my stillness and silence I can handle my twisted fate but find it unexceptionally hard on my mom who is my caretaker and watching her only child once a strong marine waste away . I am staying strong and positive to show others with and without als that we can survive and wont settle for just compensation and tears while big businesses and the government vaccinations pesticides and toxins poison us

[Sandie]

Katie,

We tried the Special Foods site recomendations as much as we could afford and saw great improvements especially with the head banging.

We stripped his room, just didn't do the wall coverings. We took out all carpet and sanded the floors to raw wood, took all plastics and foams out of the house and had no electronics at all in his room, just a few virgin wood toys.

We even removed all our non 100% cotton clothing, we only had clothing that had been washed and rewashed in organic laundry detergent as so to be free of pesticides.

We saw such an improvement, all we do now is special diet, safe environment and therapy. When he regresses we start cleaning his environment first and get back to a super strict diet.

Oh well I hope this helps. Sandie

[Tracy]

Great article, Katie! I'm so sorry to hear about Christian's self injurious behaviors. My son has also suffered with the closed fisted head and face hitting, and we, his parents, have suffered right along with him. We finally have this somewhat under control with the use of a behavioral modification technique introduced to us from Dr. Vincent Carbone from New York. I pray every day that it will continue to work. I too believe that my son's behaviors stim from headaches brought on by some environmental factor. You are in my prayers. Keep up the good work for the sake of our kids!

[Ann Benson]

I don't have a cure for autism but I have an idea for prevention:

Eliminate all vaccines.

Prosecute all those that have mandated and insisted on giving the toxic vaccines.

Take all the excitotoxins such
as MSG, mercury, and aspartame out of the food supply.

Eliminate all chemicals, antibiotics and hormones from our food supply.

Eat fresh fruits and vegetables that are not sprayed and genetically engineered.

[Lynda Huggins]

Hi Katie,

I agree 100% that a large-scale independent study of vaccinated vs unvaccinated should be a high priority. That is exactly the purpose of the Autism Puzzle Pieces we are distributing for the Million Dollar Puzzle. We can trust the Autism Research Institute to use those funds specifically for such a study. Our government is never going to fund such research. We all know that. It is up to us, those who love and care about someone with ASD to make it happen. I urge everyone to go to the ARI web site and join our efforts. Together we CAN make it happen.

[mlinn]

There is also a documented high incidence of ALS in Gulf War veterans (from the first war in 1991). Lord knows what the veterans coming home now will face (my poor husband included). I do think the Department of Defense is quietly starting to look at vaccines, but I agree with Katie that we need to make a serious course correction in our national research agenda. This goes for autism and all auto-immune disorders. Showing the similarities in these diseases will hopefully build consensus and support for these efforts (instead of everyone fighting over their share of the research pie).

[Libby]

Dear Katie -

Sorry for the short note, autism you know, but we have been through this so many times over the last 8 years. Here's what head-banging has meant over the years -

teeth coming in (baby and even worse for permanent)
kidney stones
oxalates in urine
gut pain - cramps, allergen
clostridia infection (big head banging)
headaches
restless leg syndrome (check ferritin levels)

I hope you find the trigger and can ease his pain.

[Teresa Conrick]

Katie,

I can so relate to these horrible bouts of pain and I am so sorry for you all. I remembered you writing about your vacation last year (maybe the same time of year)and Christian being so sick. It's those days when we have to witness suffering and cannot stop it that are really almost unbearable.

A day without pain, biting on the wrist/fingers or banging the head... common behaviors that really means GUT and BRAIN INFLAMMATION (for all those neurodiverse cheerleaders or in case the DSM-V/pharmaceutically-tied writers happen on our blog here) is so appreciated and gives a tease of normalcy.

One thing I know for damn sure -- this community is not waiting 70 years! We are going to change this historical mess and most likely do it, as we have been, with dignity, science, and a collective roar of teamwork.

[Tommy T]

Hi Katie,

As usual, some really good stuff there. This comment, " We think Christian is suffering from severe headaches..." struck a chord with me with relation to the behavior you are seeing. If you wouldn't mind, please take the time to email me as there is something we went through with our daughter and her "headache behaviors" that may warrant further discussion. I'd rather not go into it in a public forum, I'm sure you understand. My email is in the required post field. Best of luck.

[WE SHALL OVERCOME]

I couldn't agree with you more, Katie.

I hate to be a natural born pesimist that tends to reflect on the negative, but when I read the following today I couldn't but think of our situation and the failure of those in power to avidly search for answers on vaccine-induced-autism. It's from a post by Errol Morris on the NYTimes about former Defense secretary Robert McNamara. According to Morris, McNamara knew early on that the Vietnam war was unwinnable and that thousands of americans were dying in vain, but that his position as Secretary of Defense and his loyalty to that post had kept him from saying what he thought until much later in life. As a proof of his inner conflict, Morris tells that:

In a 1966 speech in Montreal (delivered while he was still secretary of
defense), (McNamara) returned to the theme of rationality:
“Who is man? Is he a rational animal? If he is, then the goals can ultimately be
achieved. If he is not, then there is little point in making the effort. All the
evidence of history suggests that man is indeed a rational animal but with a
near infinite capacity for folly. His history seems largely a halting, but
persistent, effort to raise his reason above his animality. He draws blueprints
for utopia, but never quite gets it built. In the end he plugs away obstinately
with the only building material really ever at hand: his own part-comic,
part-tragic, part-cussed, but part-glorious nature.”

That is why the autism-vaccine connection is still not being seriously studied and, thus, it will take great pains to completely reverse course. The rational (?) leadership responsible to lead this effort is in a set mindframe to stay the course on vaccine policy at all costs, this is their own Vietnam and they are still on the buildup phase. They are incapable of seeing that they are only making matters worse. I just hope that someday, sometime, at least someone of those responsible will say like McNamara that "we were wrong. We were terribly wrong" with respect to vaccines.

[Garbo]

I, too have vaccine injured children, grandparents with alzheimers, and a friend who is living with ALS after being diagnosed at age 35. I believe that ALS is also part of the same pattern of environmental toxic damage to the immune system. My friend is part of an unexplained ALS cluster from the same area of Michigan; in addition to living near a polluted lake, he worked in several jobs that involved chemicals. There's another ALS cluster being investigated in New Hampshire; those researchers suspect it has something to do with toxins from a particular algae in lake water. Through a mommy & me group a few years ago, I met a woman who was a researcher at an ALS hospital; she told me that another cluster of early-onset ALS was found in Air Force pilots. They don't know why. (Military vaccines + mercury vapor from cockpit switches?)

Through fundraising efforts, my friend met another ALS sufferer who happened to be a very rich man. He basically said, what research needs to be done now -- the answer was to do blood and genetic tests on diagnosed ALS/MS/MD patients to see what commonalities there were. He agreed to pony up the money -- a considerable sum -- but only if the people who did the testing and research agreed to share their results with each other and with the public. Guess what happened? Most of them said no thanks. Everyone wanted the research money but nobody wanted to share the results; they all wanted to be the only one to "discover" the cause/cure.

And then there's Jenny Tetlock and the other girls who have been killed or damaged by Gardasil -- doctors thought maybe she had juvenile onset ALS, but couldn't be sure.

SIDS, ADD/ADHD, schizophrenia, autism, Gullaine-Barre, MS, ALS. Polluted lakes and air. Mercury fillings. Toxins in toys, baby formula, baby bottles, bedding, pajamas, playground equipment. Toxins and chemicals in our genetically-altered food supply. Toxins injected into our bloodstreams.

But nobody can find out what's wrong, because it's all just such a mystery, right? God forbid we start doing food allergy, toxin & metals testing on all people at their annual physicals, to find out a baseline of what's normal and what isn't. If we busy moms and dads can raise our heads out of our little bubbles to see these connections so clearly, why can't anyone else? Do we have the stupidest people on earth running health research, or just the greediest and most dishonest?

[Jack R.]

That same day Katie Curic had a report on "some promising new research for ALS."

Foolishly I was excited and stayed tuned in. What would it be; mito? detox? diet? vit. supplemenation? I knew it just had to be something I would find similar to biomed.

Nope. They found a way to engineer skin cells into stem cells capable of growing motor neurons. This way they hope to compare motor neuron growth in healthy vs. ALS people. Cool? Yes. Useful? Not so much. My guess is they won't see a difference unless they happen to spill some pesticide in the dish.

[Craig Willoughby]

My Grandmother died of ALS two years ago. We have no history of neurological illnesses in my family, and her symptoms didn't appear until 2003. Her illness was horrible to see; it took away her two favorite things, which were talking and eating. Her passing, though, was very peaceful, and for that I am thankful. She died in the arms of her husband of 55 years.

Katie, my son also has a peculiar sense of changes in the weather (my wife calls him Barometer Boy). When he really gets agitated, he hits himself in the head as well, but he also bites his arms. The poor guy at one point a few months ago had bruises in the shape of his teeth all up and down his arms. The only way we can calm him is for me to hold him down, his arms spread at his side, and to push his knees up to his chest and basically put some of my weight on his legs. He fights for a minute, but then calms down.

What scares me to no end is how strong he is. In the midst of one of his fits, I held him down to stop him from hurting himself, and he lifted me off the floor. I'm 6'4" and weight 230 lbs. He's 7 years old and weighs 60 lbs. He picked me up.

What is he going to be like in 5 years?

[candace]

right on bob..and all of you are right..seems autism and all these disorders are profitable..so what is there insentive to find cures..cures are not profitable..maybe a year or two with moms not getting giving birth..now thatwould scare the hell out of the profit mongrals and really hurt tax rolls..bottom line as long as someones making $ they dont care what happens to our kids...candace

[Anne Dachel]

Katie,

I'm so sorry to hear how Christian's been doing.

You write, "Researchers have been looking for a cure to ALS for 70 years. 70 YEARS! 70 Years, and still so little progress?" I fully expect officials and researchers to be scratching their heads over autism for the next seven decades also. Playing dumb is their hallmark. (Except of course on the issue of a link to vaccines.) The 21 year study on children's health problems is a good indication of just how much they want to put off the problem.

Actually, what else can they do? If they admit that there's been an actual increase, they open the door to what's causing it. It's essential that they pretend autism is some genetic disorder. Seriously, the autism rate could be one in 10 and the folks at the CDC would still be congratulating doctors for recognizing the obvious.

I'm always amazed that while experts look for a cure, they don't focus on prevention/finding the cause. Something causes the body to suddenly go haywire, yet doctors so willingly throw up their hands as if it's beyond the scope of their understanding. This is a bizarre attitude from people who are supposed to be healers. All the health problems we see overwhelming our children, including autism, diabetes, rheumatoid arthritis, allergies, asthma, childhood cancer, aren't just acts of God. Our children aren't healthy. I never remember kids sick like they are today when I was young. When are officials going to admit that we're failing when it comes to children's health? If this pretense continues, we'll be nothing but a nation of the chronically ill and disabled.
Best,
Anne Dachel

[Andrea]

Dear Katie,

I am so very sorry to hear you report that Christian is hitting himself in the head. We have been there with our son many times. Those episodes (really periods of time) are so stressful. I can completely relate to the feelings of frustration as to why this is suddenly occurring and the helplessness you must be feeling.

We also took my son to a neurologist when this was occurring- hoping to uncover the cause of this new disturbing behavior. Headaches, seizures, chiari malformation- who knows?

We never did uncover the cause the neurologist was as baffled as we were and offered various anti-seizure medications to try. "Try this one for a month and if they stop (headbanging episodes)..great...If not try this one for a month and if they stop..great...if not I don't know what to tell you". That's the only help he had to offer.

We never did fill the prescriptions and the headbanging slowed and then slowed and eventually stopped.

Our poor children. How they must suffer in agony and no one seems to understand why. Then those things get blamed on the "autism" since the doctors have no answers. He head bangs becasue he has autism. Oh, bullshit...

Many family members and friends tell me I need to get over what caused my son to be this way and just deal with the here and now. How can I do that? What made my boy like this? What caused him such pain? What took away his voice that he can't even simply tell me what's wrong.

Oh dear Katie I do relate. So many of us do. We must push on for answers.

As far as ALS is concerned. I learned after my son's diagnosis that my maternal grandmother contracted and died from that disease. I am adopted and my mother gave me the name of my parents to hopefully discover any medical information that has affected the familythat might be helpful to my son.

My birth parents married and had two other children. My birth mother and siblings were tested with whatever genetic tests they use for ALS and were found not to carry the "gene" that causes ALS so said my Birth Mom. I never thought to ask about what the testing involved.

But, it doesn't matter. If in 70 years they haven't figured out what causes ALS genetically I'm sure those tests were virtually worthless. So much attention paidto genes and not what affects those genes- that makes one fall ill to this or that auto-immune disorder.

So, my son has a family history of ALS, autism and various other auto-immune disorders from both sides of the family. My son regressed into autism after his 12 month vaccinations. He completely changed and was sick all the time. That is not normal. That is not "autism". He was brain damaged and his immune system ravaged.

I'm not scientist but vulnerable genes mixed with environmental insults creates a plethora of auto-immune diseases.

It's that simple.

[Stagmom]

When Bella has gut or headache pain she bites her fingers bloody. But that's just autism behavior right? Demand more.

[Gregg Kunkowski]

Katie, My son does exactly the same thing. It turned out to be yeast toxins. I give him 3 Activated Charcoal tablets BEFORE he eats in the morning. This works like a charm. Allow 3 hours before giving any other supplements as the AC will absorb them as well as the yeast toxins.I conducted an experiment to confirm what I was seeing. I alternated days on and days off AC. The days on He had no headaches, the days off he had them. Good Luck.

[Bob Moffitt]

Our family shares your frustration and anger. Our little guy "regressed" six plus years ago..and...in those long six years... absolutely nothing has been accomplished by public health officials that begins to explain what happened to him...and..tens of thousands just like him.

The only things they know for certain they knew 6 years ago:

THEY DON'T KNOW WHAT CAUSES AUTISM...BUT...THEY DO KNOW IT IS NOT THE VACCINES.

I believe our elected representatives have been as derelict, if not moreso,in neglecting their "oversight" duties of public health agencies. The same Congress that was "outraged" at reports of steriod abuse by major league baseball, has remained aloof and indifferent, exhibiting no similar "outrage" that autism remains epidemic in this country.

My God, what are their priorities...how do they sleep at night?

SOMEONE IN WASHINGTON D.C. MUST DEMAND THE CDC "UPDATE" THEIR REPORTS:

ARE PARENTS RAISING A GENERATION OF CHILDREN WHERE:

1 IN 3, INSTEAD OF 1 IN 6, ARE AT RISK OF CHRONIC AUTOIMMUNE DISORDERS, AND, DOES AUTISM NOW THREATEN 1 IN 60, INSTEAD OF 1 IN 150?