Opinion by Consumer Advocate Tim Bolen
I criticize the fact that what I call “Autism Leadership” does not generally organize, goal set, plan, and execute plans. My complaints are valid, for those in power are not getting far in solving the autism problem. I keep saying that the Health Freedom Movement needs to take over this issue and help the autism world – setting a timetable to mitigate autism issues – for they are all fixable.
But, in Autism Leadership’s defense I need to point out that some of the problems the autism community faces are absolutely insane – like the story I am about to reveal to you today. The “Who Killed Alex Spourdalakis” story.
Andrew Wakefield MD, a guy who does get things done, sent me an email a few days ago. In it he had a 2 minute forty-five second short video talking about the documentary he and Polly Tommey from the Autism Media Channel are putting together about what happened to then fourteen year old Alex Spourdalakis in the Chicago area. I watched it, and then called Andy asking him for more details. He sent me a completely confidential 22 minute video that answered 95% of my questions. He asked me to hold that 22 minute video close.
The “Who Killed Alex Spourdalakis” story holds, within its circumstances, a detailed graphic outline of the problems autism parents generally face. In its reality is a horror story – for once I child is diagnosed with “Autism” ALL conventional medical doors are closed to them – for conventional medical care proponents have decided that “Autism” is “all in their heads” and, consequently, is a “psychiatric problem,” to be dealt with with mind bending drugs, rather than any kind of “medical problem” to be dealt with by regular health professionals.
Health Professionals operating within what’s wrongly called “Alternative Medicine,” all members of the Health Freedom Movement, look on this strange situation with disbelief, for, for them, autism is an easily, and readily solvable issue. Why? Because “Alternative Medicine” (cutting-edge) practitioners, all of which are trained FAR beyond conventional practitoners, recognize autism for what it really is – a form of encephalopathy which can be broken down into four much simpler categories – and, hence, be dealt with very successfully. More – health insurers pay for the treatments, the patient gets better, and the patient caregivers can sleep at night, like parents of normal children.
So, why isn’t that being done? Why aren’t we, as a society, solving the autism issue? Good questions – all of which I am passing around, quietly, to Health Freedom leadership…
Dealing with important issues…
I’m seventy years old as of last month. I’ve got, sitting out in the yard, a really cool, old, but freshly re-painted, 23 foot Winnebago Itasca motorhome that I can see from my window. It calls to me saying “Sequoia., Kings Canyon, Idyllwild, Joshua Tree, Lake Havasu, Baja Mexico, Mount Palomar, Jalama Beach, Golden Trout Wilderness, Domeland Wilderness, Yosemite.” It whispers “flannel shirts, blue jeans, campfires, cold nights cuddling with my wife of forty-eight years, hands wrapped around a cup coffee on an ice cold morning, reading a new novel in the fading light with a spectacular view over the top of the page…” And, its persistent.
Late September, early October, is a camper’s dream in California – for the kids are all in school, so all the prime camping places are virtually empty. The tourists have gone back to Europe. The nights are cool, the sun is further down the horizon, making photography opportunities not available in the bright summer light.
And, I want to go….
I went out yesterday and plugged it into AC power so that my battery system is fully charged. I checked my fresh water levels, the holding tanks levels, and my supply of propane. Then I checked what food I had stored, and whether all of the linen was washed and on board. Everything was fine. I could put the key in the ignition and head out.
Of course I’d get some argument over that from my wife Jan. She is of the opinion that 24 cans of Dennison’s Hot Chili, two boxes of crackers, and some canned milk, is NOT all we need for a week out. She wants to put stuff in the refrigerator. Some of it is even green like lettuce. Can you imagine?
As you can tell – I’m ready to go. Joshua Tree is gorgeous this time of year (see photo).
But then, the other day, that blankety-blank (humor intended) Andy Wakefield sends me an email about the newest documentary he and Polly Tommey from the Autism Media Channel are making, and asks for my help getting some funding to get this story out. With it is a two-minute-forty-five-second trailer for the piece – and I watched it.
Dammit.
As I said, I called Andy with a list of questions I wanted answers to for the article I was going to write about this situation. In response he sends me another top-secret twenty two minutes of the upcoming documentary. And I was fool enough to watch it.
Dammit, again.
Camping trip postponed. For good reason. I can’t ignore this issue…
Before we get to the “Who Killed Alex Spourdalakis” Story…
My readers are primarily in the Health Freedom arena. So, my articles are aimed at that readership. To my autism audience some of my material is old news, except of course, where I criticize Autism Leadership’s ability to focus, work together, and organize campaigns. That series, not over yet, has rattled some cages. Rightfully so.
But, no matter what I do, it is virtually impossible for me, or any writer, for that matter, to be able to lay out for readers the life horror that autism brings to, now, over four million children and their families. You just can’t get it unless you are living it. And, if you are living it, God help you.
I was raised in the Roman Catholic Church, and as many of us say, with an insider’s comment, “I survived Catholic School…” The Dominican Sisters that staffed Catholic Schools in the US mid-west are a demanding lot. Between visits to the Principal’s Office for fist-fighting on the playground (I’ll bet that doesn’t surprise anyone), the Dominicans were instilling in me, and all of us a code to live by.
In Catholic terminology the Dominicans have six precepts they teach. Here are three that directly apply:
To promote a greater awareness of the sanctity of human life and the dignity of the human person.
To provide students with a solid liberal arts education, so that with a strong academic foundation and the development of their personal gifts, they might more freely respond to their God-given vocation.
To promote an authentic Catholic culture, thereby enabling students to appreciate all that is good, true and beautiful.
In short, I got more out of Catholic School than a left jab.
Screw camping for now, I know what my job is. There about twenty Dominican Sisters up there on a cloud looking down saying “you know what you have to do, Tim…”
If you want to know WHAT ELSE those Dominican sisters are saying click here, and listen for thirty seconds. It is what Catholic kids grew up with. When I first turned on that website page, and the music came on, I could smell the incense.
The “Who Killed Alex Spourdalakis” Story…
This is the REALITY of autism.
Alex Spourdalakis was a fourteen year old autistic boy living in the Chicago, Illinois area with his parents. After a series of events his mother and godmother killed him, and then unsuccessfully, tried to kill themselves. The mother and godmother were arrested and put on trial for murder. Their Defense attorney, Michael Botti, has entered a “Not Guilty by Reason of Insanity” plea for them, for good reason. I am about to tell you why he did that.
More, I am about to tell you that what happened to the Spourdalakis family is happening, in one form or another, to hundreds of thousands of parents of autistic children. I’d guess that tens of thousands of those parents are getting closer, and closer, to actions similar to the Spourdalakis family – and for the same reasons.
CBS News, here, tells a big part of the story. Watch it right now…
In summary, Alex Spourdalakis was taken, by ambulance, to the Emergency Room at Gottlieb Hospital, part of the Loyola University Hospital system. He was strapped down, hands and feet, to an Emergency Room bed, and kept there for twelve days. Gottlieb’s claim? They didn’t have pediatric expertise. They completely ignored Alex’s mother Dorothy’s complaints that Alex had something very, very wrong with his stomach. Instead, they insisted that autism was a psychiatric condition, and gave him mind bending psychiatric drugs: Larazepam (day time and night time) Clonazepam, and Zyprexa – plus Topamax as an anti-seizure. Nothing for his stomach problems.
When someone from the hospital secretly notified the group Autism is Medical‘s Jeanna Reed LPN, and mother, herself, of an autistic child, things began to happen. Jeanna enlisted Jill Rubilino, RN, also a mother of an autistic child. This led to a Gottlieb Adult Gastroenterologist to start the process for an Endoscopy, but the decision was made to move Alex to another Loyola University hospital where a Pediatric Gastroenterologist could perform the examination. Alex was transported, but it was five days before any doctor came to see him – meanwhile more psychiatric drugs. The doctor stayed for five minutes, talking to the mother, never examined Alex, what-so-ever, and left – never to be seen again.
Loyola Hospital became THE PROBLEM. On the sixth day another Pediatric Gastroenterologist, this time a woman ordered the examination. But, five days later all of that was overridden by Dr James H. Berman MD, Chief, Division of Pediatric Gastroenterology, Ronald McDonald Children’s present Hospital, Loyola University Medical Center, Maywood, IL entered the room with his large entourage, saying:
“There is absolutely no need for any GI procedure for now. There might be a GI issue but it is secondary to the psychiatric issues. And, if you heal the mind, the rest is going to follow.”
Berman leaned over the bed , wagged his finger under Dorothy Spourdalakis’s nose and said, condescendingly:
“Do you get it? Do you get it?”
The Autism is Medical people refused to give up, delivering pertinent medical literature to Berman’s attention, calling in experts from other hospitals, etc. – to no avail. They filed formal complaints with every government agency they could find. After nineteen days of Alex in restraint Lisa Goes wrote about this situation on Age of Autism. She recommended, quite correctly, that the people on the scene at the hospital go to the press with the story. Most press refused, but some did the story. And, when that happened, Loyola Hospital system went into panic mode.
Loyola decided to IMMEDIATELY discharge Alex, claiming they had no “medical reason” to keep him, that all of his problems were “psychiatric.”
Dorothy, and her family, headed for Far Rockaway, New York where Dr Arthur Krigsman MD practices. Krigsman is a pediatric gastroenterologist specializing in the evaluation and treatment of children with autism spectrum disorder (ASD) and related disorders. His practice focuses on the clinical needs of children with autism and co-morbid concurrent gastrointestinal symptoms.
Dr. Krigsman performed adequate testing and found that Alex’s stomach was riddled with hundreds of lesions, and that all parts of the stomach were inflamed. No surprise to the Spourdalakis family. They headed back to Illinois, but more problems developed.
Alex’s family tried to keep him on the prescribed diet and other treatments, but they were becoming exhausted. After about two weeks Alex worsened again, and the family took him to another Emergency Room where the new hospital, once again, restrained him, gave him IV drugs, and then, they too, despite the medical evidence provided by Dr. Krigsman, declared him to be, once again, a “psychiatric problem.” They made plans to transfer him to a long term psychiatric facility. But, they couldn’t find one that would take him.
There are virtually no facilities that can handle these kind of problems.
A few days later they were informed by their health insurance carrier, Aetna Insurance, that they, Aetna, would no longer pay out any money for Alex’s care. The hospital ordered them out the door. Perhaps many of you remember the article series where I wrote about Aetna Insurance? I was a consultant, myself, to the Plaintiff in the Cavitat v Aetna federal court case, where there was a lawsuit over the fact that Quackwatch.com’s Stephen Barrett was Aetna’s “consultant?”
Yeah, THAT Aetna Insurance.
Alex was sent home – with no possible medical care available in the future. Not long after, his exhausted and totally demoralized mother and his godmother killed him – and tried, unsuccessfully, to kill themselves.
So, let’s analyze this situation…
First let’s ask the question “How long would YOU last, before you lost it, under these circumstances?”
Then let’s ask “How many more of these situations are we, as a society, going to allow to happen?” There are four million autistic children now – virtually ALL of whose families are told “It is a psychiatric problem…” Is what happened to the Spourdalakis family going to happen to them all?
Then “Is there something that we, the Health Freedom Movement, can do for these people?” The answer is, of course, “yes there is.”
Things are VERY desperate in the autism community.
What can we do?
There are several things – The first, and most obvious, is to support the production of the documentary. I have never asked anyone, ever before, to support, with money, an issue. I am now. Go here, please, and see the short two-minute-forty-five-second video. Contribute.
The second thing is that when the documentary does come out, help distribute it.
The third thing is a little more complicated. For weeks now, I have been interviewing knowledgeable people asking several questions:
(1) What should Gottlieb Hospital Emergency Room, and Loyola Hospital have done for Alex Spourdalakis?
(2) What, specifically, are the “medical issues” of autism?
(3) What is the best way to solve each child’s autism problem?
After one or two of those phone calls I want to go and take a nap – my brain gets so full of medical terminology. But the gist of it his that autism is a solvable medical condition right now. Period. And, what happened in Loyola Hospitals should not have happened.
Stay tuned.
Tim Bolen – Consumer Advocate