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Weekly Wrap: A Death Illumines the Autism Nightmare

 

AS scope
Alex's Endoscopy Revealed Too Many Ulcers To Count


AofA Red Logo Ayumi YamadaBy Dan Olmsted

 

Now we know.

Now we know that Alex Spourdalakis, whose short life ended so tragically, was afflicted with the kind of GI damage characteristic of so many other children with autism.

We know because finally, after getting out of the Loyola Hospital hellhole, he was scoped by Dr. Krigsman.

We know because images from the scoping were shown yesterday on CBS. (See screen grab above of what Krigsman called "too many" tiny ulcers to count.)

The one thing we don't know is when the medical world will be held to account for this catastrophe -- not just the effects, but the cause.

Because, of course, the deepest issue is causation. I've been told that Alex's mother specifically described a reaction to the MMR shot as the cause of her son's regressive autism. To cause autism and unbearable gut damage, deny it, and fail to treat it -- well, that is quite some record for a "helping" profession. A broken record, sadly.

As much as I like Sharyl Attkisson and am glad to see this story -- first exposed by AOA Contributing Editor Lisa Goes months ago -- gain national attention, the segment devolved into a bit of a mess. Ari Ne'eman, really? He gave his usual spiel about how some people think autism is so bad its sufferers might as well be dead. So what, Ari, since you don't believe in treatment? Many people who are in agony wish they and/or someone else they believe to be in agony were dead. Some act on that wish. That's bad. Very bad. Tell us something we don't know.

Tell us how to stop it. Tell us how to treat it.

Those of us in the autism biomed community know that won't happen anytime soon, because this goes to the heart of Andy Wakefield's research, the supposedly discredited and fraudulent Lancet case study from 1998 that reported just this syndrome -- MMR, regression, gut pathology -- in 12 children. Hundreds of thousands more children have suffered the same fate since then; many, many more are destined to if things don't change.

And that's something we know for sure.

--

Dan Olmsted is Editor of Age of Autism.

Comments

jen

Linda- sometimes advocacy will lead one to strange places.

jen

Carol, yes, Orac mentions the pesky ulcer briefly and he asks any of his gastroenterologival colleagues if they wish to chime in on what they think. It reminds me of the time this "healthcare anaylist" ( with a pharma marketing research analyst company) wrote an article slamming CCSVI while referring to trumped up (many feel poorly done-on-purpose) studies to try and make her point. She had so, so much negative feedback from her article that she implored any neurologists to state their opinion. No neuros bit and I'm pretty sure no one wants to attach their name to such crap. That being said, it will be interesting for all to read what the report on the ulcer was.
I actually clicked on the "a facelift without surgery" link he has. I wonder if it's "science"-based? Zulily looks nice.

Linda

I can't understand why anyone would willingly go into Orac's AKA David Gorski's snake den.

Carol

I was wrong. (I think I dozed off.) In "Sharyl Attkisson and CBS News: Lying by Omission...," Orac does mention Alex's ulcers, saying that he doesn't know what he's looking at.

(Does anyone else think it's odd that in a long, supposedly serious post by an eminent man of medicine about a deadly serious tragedy befalling an innocent young man, that in this post the reader is invited to click through to read about the Dog Whisperer and the TV show "What Not to Wear"?)

Carol

No mention so far of Alex's intestinal lesions by Orac, but we do find out that Orac watches "What Not to Wear."

Aussie Dad

Lets all be grateful Alex never had measles. He only had regressive autism. Nothing to see here people , move along.

Birgit Calhoun

I have given up on Science Blogs a long time ago. The people are rude and generally lacking in compassion. They think science is a discipline where you win or lose. An open mind is not required. It's a waste of time trying to talk logic with commenters. Science is inquiry and it really requires an open mind. It's a very long haul to change people of that ilk.

ottoschnaut

Poor Alex is gone and two other lives at least are ruined- what good could ever come from this? If there is a martyr here as Angus suggests it would be Alex and possibly his mother. Because of Alex's unimaginable agony and death, pictures of his diseased gut were put on a national mainstream network TV broadcast.

The pictures on CBS Morning News are revolting and at the same time cathartic. Alex writhed in agony with a diseased bowel because it is politically incorrect to connect ASD with bowel disease. His mother was shown washing his feet, sleeping by his bed, trying to ease his suffering- being a Mom. The ugly, undeniable truth was put out there- it took Alex's death for that to happen.

So why did Loyola Hospital medical director steadfastly refuse to take a simple abdominal CAT scan or similarly minimally invasive picture of Alex's gut, for at least 12 days? What is the medical rationale for ignoring the child's pain?

Where are BMJ and Johns Hopkins on all this? Are they still standing by their man, Brian "Those Kids Don't Have Bowel Disease" Deer?

Some years back Susan Senator wrote an op-ed in the Washington Post discussing her feelings about having a terminal disease and a son with autism. She expressed her stomach wrenching concerns, fears, terrors as to what her naive son would be subjected as a ward of "the system." The New York Times wrote a devastating expose of New York State's public mental health care system responsible for long term care of mentally ill. The story focused on the case of a boy with autism who was murdered by his caretaker, while the care taker was smothering the boy he was quoted as saying: " I told you. I can be a good king or a bad king." When a parent is confronted with the idea that their child will spend a lifetime under torture, in untreated agony, in incommunicable despair- I suggest the stresses of such thoughts could break a person's mind.

The nexus of scientists are doctors who continue to block medical investigation of kids with ASD- because they actually do know where the science will lead- are common criminals. If the death of Alex reveals them finally for what they are his death will still be as tragic but it will not have been in absolute vain. An insanity plea by Mom with an ensuing, high profile trial- no plea bargains- a jury trial- would cast more light on the the association between gut disease and iatrogenic vaccine induced brain damage. Jury nullification of charges against Mom are a possible outcome- as well as putting the pharma vaccine complex scientists and apologists under oath.

Alex is dead. RIP, Alex. Let us do all we can to make your life and death meaningful.

jen

Thank you for your comments, John. I do not have a child with autism and as "lilady" points out, I am 'just an aide in a classroom', yet even I feel afraid of them as much as I would have liked to discuss some points around autism. It is not worth the neck and shoulder pain to come so close to a real discussion on "Science"blogs (I think Passionless Drone was a part of some of them) for them to simply attack and ignore the points. I look at what 'lilady' does in terms of mocking people and tracking them like Jake (about his specific course work and dating etc., characterizing him as a stalker which is ironic!) and it just sickens me.
I used to get World magazine as a kid, participated in the Genographic project and have bought things from the National Geographic catalogue. I will have nothing to do with them any longer.

Hera

Hi Aunt to a nephew with autism
Not quite sure what your point is here.

That the correct treatment for multiple ulcers in the stomach is being sent to a mental institution???

That a nonverbal child with autism on Medicaid is lucky to be strapped to a bed for twelve days while his ulcerated stomach is untreated??

So next time you have stomach pains, your idea is to go straight to the nearby mental institution for diagnosis( after enjoying a pain filled vacation strapped to the bed for 12+ days without any medical treatment beyond psychiatric meds)?
Got it.
Imo being able to acknowledge mistakes is the only way a hospital can improve.
Are you really trying to pretend that Loyala treated Alex appropriately?
Restraints without doctors orders for 12 days ; good for all of us, or only for kids with autism who can't speak??

Eileen Nicole Simon

Birgit, thank you for the link, http://www.stanford.edu/~bcalhoun/amalgam.htm

How wonderful that you can read and accurately translate German articles. Prof. Norman Geschwind (who died tragically young in 1984) was upset when Harvard eliminated reading knowledge of German for science majors. He told us that a goldmine of evidence can be found in the pre WWII literature. You have struck gold with the papers by Alfred Stock.

There is more useful evidence to be found in older papers on neuroanatomy and neuropathology, even in this age of fMRI.

I had all my amalgam fillings replaced several years ago. The health benefits were immediate. I no longer need to use Sensodyne toothpaste, and it is wonderful to be able to bite into a hard cold apple again. Removal of amalgam should be mandatory for everyone.

John Stone

Barry

Your analysis is fine except that they are trying to damage anything and everybody that steps in their way. It is almost always an error in this story not to interpret it as a human drama - you can go into the bad science but it is human greed and corrupt institutions that create it. The bad science is invariably supported by hate journalism, notably the continuing campaigns against Andrew Wakefield and Jenny McCarthy - according to the old Merck rubric of destroying people where they live.

http://childhealthsafety.wordpress.com/2009/10/12/merckdestroydoccritics/

Very little of this is subtle but they have the advantage over tobacco manufacturers that tobacco is recreational whereas vaccines are supposed to save lives, but the ruthless cynicism at the heart of it is much the same - I accept that there are real believers in the project but there are many who know and who just don't care, or who argue to themselves that there is some net benefit so they have to lie ruthlessly about the harms because no one would ever accept the program if they were acknowledged.

I don't know about Gorski and his column. He's a dreadful ranter: every column he seems in a lather about bad people who don't understand. Perhaps he fears them - the mode is never of patient discourse it is of hate, hate, hate and bad, bad people. It diminishes the name of science but still he can't stop.

Of course, this has alway been true of his somewhat grander British equivalent, Ben Goldacre, of the 'Bad Science' column: it has always really been about 'bad people' who don't understand.

I am sure, by the way, Gorski writes all his stuff himself and it doesn't take very long.

Aunt to an Autistic child

Hi Birgit Calhoun

"Aunt to an Autistic child! Have you ever seen the movie or read the book "One Flew Over the Cookoo's Nest"? It's a great movie with Jack Nicholson, and it's very disturbing."

Yes - it disturbing. Also, it is a work of fiction, and addressed an older system of care. I used to work at Howe (in Tinley Park). It was a mental health (state run) facility that dealt with all manners of disability and medical issues. It was a wonderful place, but has been closed (budgetary issues). My nephew is higher on the spectrum, and does not have the behavioral issues that Alex had. But my sister would have no qualms about getting him placed in a facility like Howe, if need arose.

"A mental institution does not look for bowel disease especially when there is "No reason to look." Bowel disease needs to be treated in a non-psychiatric facility."

We sent residents for medical care all the time to hospitals, including scans/etc. This was when any medical issue, and also GI issues were suspected (gas, bloating, constipation, etc.). I'm not sure where your information is coming from, but if it is from the "cukoo's nest", then check out some updated material, or visit a local facility. I think you'll be pleasantly surprised :)

So, the news was correct - that he was offered placement in a facility? Was it refused by the family, or was the offer taken away? This story has me floored, and I'm just trying to figure out what happened. Of course, figuring it out won't change that Alex was murdered. :/

Barry

What I really need help with here is how on earth is trying to help your child with bio-medical measures abusive to the child?? Vit D, probiotics, chamomile extract, etc. how does that equate to child abuse or Munchausen's by Proxy, as Scienceblogs wants to portray???

************

Trying to help your child with bio-medical measures isn't abusive to the child, and Munchausen's by Proxy is nothing more than baseless , senseless psychobabble.

Scienceblogs is funded by the pharmaceutical industry. An industry who knows that determined parents are using biomedical interventions to reverse vaccine damage.

When a parent is able to do that, not only are they reversing something that we're told isn't there, but they're also accomplishing something that the medical community has either been completely unable, or completely unwilling to do for them.

IMO, Scienceblogs isn't really attacking parents. What they're desperately trying to do is silence the truth about what these parents are accomplishing. Because autism is just the tip of the iceberg when it comes to vaccines damage. And when parents around the world come to understand this truth, which in inevitable now, it will be game over for the pharmaceutical industry. And for anyone else who was dumb enough to have jumped into bed with them.

Angus

So far as Orac goes they get your I.P. Address and allow or block you.
Dr Andy Wakefield will live with all of the autistic community for years to come MARTER IN THE TRUE SENSE.....

God Bless Andy

Birgit Calhoun

Aunt to an Autistic child! Have you ever seen the movie or read the book "One Flew Over the Cookoo's Nest"? It's a great movie with Jack Nicholson, and it's very disturbing.

A mental institution does not look for bowel disease especially when there is "No reason to look." Bowel disease needs to be treated in a non-psychiatric facility.

Aunt to an Autistic child

My understanding was that Dorothy was offered help by the hospital (to place Alex into a facility where he would have medical and psychological interventions). I believe the family turned that down. At least, that is what was reported in Chicago?

jen

Linda, re. the Skeptics and Orac's gang, they try and justify their anonymity conveniently to hide their industry ties (although i have to credit a few doctors and insurance people there who do give their real names) and malicious activities- lilady's constant tracking/checking out people's activities. I honestly wonder how someone who is a medical doctor could have the time to write so many blogs and all the time it must take to defend himself (he recently mentions this). His emplyers surely must see this as a serious question/liability. He must be paid quite a bit in "Scienceblog" money or else he really likes his status as a a skeptic.

Jenny

This type of situation probably makes people like William Walsh, author of that book Nutrient Power, want to scream at the top of their lungs. This is exactly the type of family epigenetic tragedy he says can be altered or prevented with diligent and specific attention.

Why would anyone think the criminal justice system is any more fair at handling this type of situation than the allopathic medical system? It that naivite or narrowmindedness or what, exactly? They are run by the same folks. To portray these caretakers in the same light as regular killers underserving of pity is to reinforce the false political paradigm that allows both situations to continue to exist. It's like judging slaves, saying slaves were responsible for their own slavery and any of them them that committed suicide or killed their children to prevent them from living through the hell they lived through themselves was unforgivable, instead of placing the blame where it really belongs, the people placing the stressors on another human being and driving them out of their minds. These women are victims of their captors, the same as people with stockholm syndrome, but probably even worse.

Busy casting that first stone? Sh*t always rolls downhill, doesn't it?

Birgit Calhoun

John! Of course it's speculative. But maybe it's worth thinking about what mercury can do. My intention was mainly to point out that violence doesn't spring from a vacuum. Mercury poisoning does unpredictable things. In 1926 Alfred Stock, a German Chemist was affected by mercury poisoning. He battled the dental profession regarding the use of mercury amalgam silver fillings, and in one of his papers used this ancient Latin phrase: "Quem Mercurius perdere vult, dementat prius."

I can only say that after I have visited an amalgam dentist I have to be very careful about my mood swings, and I have found myself in totally unreasonable spats directed at family members. One reason why chelation therapy is a not good idea for a person who is suicidal or potentially violent is because it brings out more mercury into the system and causes possibly a very bad reaction. I have a web page which contains a translation of Alfred Stock's paper. I don't advertise this web page because I have not updated the links; there are many broken ones. But here it is: http://www.stanford.edu/~bcalhoun/amalgam.htm

Linda

So called science skeptics, Orac AKA David Gorski and his team, are nothing more than disingenuous political strategists. Under the pretense of protecting science and humanity, they are waging war on science and humanity. Wolves in transparent sheep's clothing.

jen

"I too hope the case of Alex Spourdalakis will result in change"... and then Orac goes on ONLY to say that he hopes Sharyll Attkisson is nailed for producing this piece- nothing to do with there being improved diagnostics and treatment for children with severe autism. I think that reveals "Science"blogs intentions and concerns rather well. All he seems to be concerned with is the fact that America got a good look at what autism really is for many (severe, not just someone like Ari Neeman!) and the fact that there are bowel problems in association with this sometimes and the fact that medically, these people and their caregivers are tragically being failed.

jen

Murder is murder and it does need to be dealt with in the courts. What I really need help with here is how on earth is trying to help your child with bio-medical measures abusive to the child?? Vit D, probiotics, chamomile extract, etc. how does that equate to child abuse or Munchausen's by Proxy, as Scienceblogs wants to portray??? Also if a child needs an endoscopy (obviously Alex did!) why is that made out as some sort of abuse?? It seems very sick and selfish not to find the source of serious pain- in fact that could be considered abusive, I would say. I think we really need to hammer on this. Scienceblogs is grasping at straws now, clearly.

Linda

Kim,

I'm sorry. I don't mean to make it worse.
I don't place any blame on the autism community, especially on AOA. Whatever was done was above and beyond. I place blame squarely on those sworn and paid (very well) to serve, who monopolize medicine and who aggressively seek to destroy any competition, who then abdicate their responsibility leaving death and destruction in their path and get away with it. And on the BMC who took away Dr. Wakefield's license to practice medicine. They are culpable for limiting a brilliant and compassionate physician's ability to help Alex and thousands of children like him. The BMC also should not get away with what they have done to children in need of his expert care. The autism community and the daily newspaper AOA should never have been put in a position where they had to try to save Alex from his disease or from a criminal predatory health care system.

If a suicidal person called a suicide help line and was hung up on, would we not place at least some blame for the suicide on those who were supposed to help?

If a person went out on a skyscraper ledge, about to jump, and the police were called, came and then walked away, would we not blame the police for what happens next?

We all have roles in society. The medical profession is hanging up and walking away.

Stagmom

Linda, I understand all of that. The legal system can only tackle the murder. I also understand despair and abject hopelessness and have the logical comprehension of how parents murder their children. Stabbing? It's beyond THIS mom's ability to comprehend. There is nothing loving in stabbing. Or sane. And maybe that's the answer. That's my opinion as Kim the Mom.

And as far as preventable? I can assure you that the community moved heaven and earth and that's all I will say. KIM

Sarah

I don't understand this at all. Alex had been to see Dr. Krigsman. He had received a diagnosis of having many tiny ulcers after his scope. Why didn't Krigsman treat Alex? If there was not enough money, why was no fundraising done by Age of Autism, or anywhere else, to help pay for Alex's treatment? Why did he simply go home with his mother?

We were told that Alex was finally in a safe place after he was released from Loyola. His home wasn't a safe place. He was killed by his mother.

No murder is excusable. But this one, in particular, appears to have been preventable.

Linda

Kim,
I don't have faith that the legal system will do this case justice. It's the medical community that should be on trial.

You bring up Andrea Yates. I think she was insane and not responsible for her actions. She was also being drugged with a boatload of drugs that had the potential to exacerbate her condition.

Sometimes parents kill because they can't bare life anymore and also can't bare to leave their children behind. In Dorothy's case, I imagine it's possible that she could no longer bare to see Alex suffer and she was completely hopeless. We don't know the immediate events that led to his death. In her mind, he could have been in agony and this was the only way to relieve it. She had already tried to get help and not only didn't receive it, but encountered a dangerous judgmental self-serving system that would torture him. She had to fight to get him out of the grips of this menacing system. We don't know the psychological toll that experience took on her. She knew that if her son was left in their care, they would not recognize his needs or his pain, would drug him into oblivion, and strap him down like an animal. There was no compassion or understanding for him or her.

I can't even imagine what her state of mind might have been at that point, having no where to go, having been tortured, victimized and unfairly judged, and knowing that her child was suffering. It's not like she planned to kill him and walk away. She was intending to kill herself too. I can't judge her. I will only pray for true justice, that the medical community be held accountable.

John Stone

The system spewed them out - Alex, Dorothy & Agatha - and left them to die in a hole. The truth is too awful for words.

In the days of ancient Rome it could happen that you were sent an order from the emperor that if you didn't commit suicide by a certain hour it would be the worse. These three people had become a terrible inconvenience.

oneVoice

Thank you John.The bigger picture is,that there is not enough money to treat and help everybody in healthcare.They disregard the needs of disabled kids and adults like Alex.Unless they have a family member who fights for them,these kids are LOST in the system,ignored and not treated properly.I am very disappointed if the comments are misunderstood,murder is a murder (THE WORSE POSSIBLE SOLUTION) and this discussion is not about "its OK to .... your child" it is the opposite,discussing the complexities of the situation and the abandonment of Alex and his mother and prevention of a similar situation.
Lilady has the biggest disability of all,she has no heart or comprehension of the truth.
WHO gives a break (and proper safe care to a disabled family member)to the parents or the single mother when she can no longer provide the care that is required??? This damage was done by the aggressive vaccine schedule,therefore the healthcare system is also responsible.
Rest in peace dear Alex.

Stagmom

John is correct - Dorothy was at the nadir of hope. What landed her there is hers to tell us - or her attorney at trial.

Why does any parent resort to murder - autism or not? Why did Dr. Karen McCarron (also a child in Illinois if that says anything about services in that state) put a bag over her autistic 3 year old's head and suffocate her? Why did Gigi Jordan stuffed her son with pills within the confines of a luxury hotel in Manhattan - she had more money than any of us. Why did Andrea Yates drown her five children one by one and calmly lay them out on the bed? Why do parents murder neurologically typical children? Why Why Why? We may never know.

What we do know is that the system for autism is so poor - so insufficient - that as children - boys especially - age up and into physical manhood - the demands of the daily care will exact a steep toll and not every family will be able to bear the responsibility. Nor is there a loving, safe system in place to take them. I think we should let the legal system do its job - while working as a community to ask the important questions that related to the sheer lack of medical interest in autism - the denial of internal issues - the insistence that behavior is psychiatric. This lack of medical care means NO INSURANCE coverage and in America that little card in your wallet drives your services - add money woes to the stress of a sick child and.... I have a friend whose preschool aged son with autism is waiting for a residential bed - his aggression is so violent the family is at wit's end. Mom is brilliantly finding help, making plans, seeking info - but it takes a toll. The average American does not realize the incredible stress of some forms of autism on the entire family. The violent behavior. The marital stress. The impact on siblings who may live in fear. All of that has been tamped down and swept under the rug and replaced with smart savanty interesting people. Do they exist? Sure - but so do kids like Alex. If we can admit we have a huge problem in autism - maybe we can get entire families the help they need and protect our kids, all of them. We need to start with the mainstream medical profession who has abandoned all of us - I see it at EVERY visit with my own three girls. ZERO knowledge or interest in their condition. We have FAPE in schools - we need an = in medicine. So that autism doesn't signal - drug them and send them home as the standard of care.

Eileen Nicole Simon

If that’s what Alex’s gut looked like, how did his brain look? Did anyone think to do a neuropathological examination?

Autism is a neurological disorder. Parents want desperately to believe these physically beautiful children can be cured. I did, and thought my son (who will soon turn 51) was cured by the age of 7. By age 17 it was clear he was not. Despite being “high functioning” he now lives in a group home, warehoused in the “community.” I continue to try to help him achieve more in life, but remain the target of much disdain.

The opinion of doctors who don’t view autism to be as serious as polio or measles, is not to be trusted. The brain must become the primary focus of research on autism. Symmetric bilateral lesions within the brainstem (hemorrhagic or ischemic) should be looked for in Alex’s case.

John Stone

Birgit

It's very speculative. What is not speculative is the very extreme circumstances they found themselves in, very low psychological condition, exhaustion, abandonment, destitution. I don't know that anybody has said what they should have done next? Obviously not that, but then what? No one was going to help Alex's pain. Bureaucratically it didn't exist.

Perhaps, the government sponsored, otiose words of Ari Ne'eman are all too significant. At no point does it touch base reality, just expedient bureaucratic blandishments, three wise monkey stuff.

John

Birgit Calhoun

Kim
What if both Alex and the mother were both mercury-poisoned and had similar bowel pathologies? Mercury poisoning can make a person violent. What if they were both vaccinated at the same time? What if both mother and child have the same APOE4 genes. Do you know what drove the mother to kill her son? What kind of mind kills? Who is Adam Lanza? She mother was not insane when she kissed him there at the hospital. I agree with you, I wouldn't kill, but what do we know about how the mind pushes you over the edge? I have seen people act under the influence of mercury. It causes you to think differently when it acts on you. There are chemicals that are unpredictable. Think of LSD, think of The Manchurian Candidate. Think that your doctor doesn't know that kind of mind and doesn't care.

Carol

Re: lilady's letter to CBS. You can google "It is now OK to kill your child" but leave off the quotes.

I bet the part where the recipient is advised to check Dr. Krigsman's wikipedia entry caused Sharyl Attkisson to do a spit-take.

It's the scroll

That is the scroll that runs during most news shows.

Larry

Since he's been denied the opportunity to get on the Public Record in Texas & this is soooo much closer to the mainstream media - how could they ignore what he has to say if the Defense puts him on the stand!!!!!

Get this issue on to the record - show exactly what happened to Alex - that'll reall get their knickers in a twist! It would be a crime all over again if the Defense doesn't call these fine doctors to put forth the actual facts of the case!!!!

Is there anything we can do to encourage this?

Beyond Mad Mad World

Just curious about the picture of Alex's GI track.
There is a sub script at the bottom updating the pollen allergy count.

Did someone put that in the picture for the article, or did CBS actually have that up and runnig at the time that CBS aired the story?

Theresa 66

I feel sympathy for them all. They deserved better in this life. Alex a chance to be all he could, not in constant pain and robbed of his childhood and then his Life. His mother and care giver, never to have come to that point of killing. I know the drop-on-your- knees and pray to God for help, feeling. I just don't understand, if they knew he was in pain, could'nt he have been given some strong pain meds. ? What would the treatments to help this look like? Is the gut able to heal with that extreme condition ? Maybe we should provide some possible help for the next child like Alex and his family. Is there a hotline ? I know writing a comment online maybe helps some, but there is nothing like a person talking to You about what they have been through and then lessening your pain.

Kim The Mother Stagliano

I make no apologies for Dorothy or the Godmother - I am vehemently against violence toward our children - PERIOD. I hope they face the fullest extent of the law. At the SAME TIME - I hope we can all look at a horrible system that ignores our kids' very real medical problems - how many parents have put their violent kids into residential care - unaware (maybe even unwilling to investigate because that might make them like "us" in the biomed community) that it was the burning decimated intestinal tract or another physical problemdriving the child to behavior and rage? And why does the system fail to look? Because then we'd have to ask WHAT DESTROYED THE GI TRACT and we can't have that now, can we? I won't martyr Dorothy - she could have left Alex on the street corner with a sign - called his father - anything but stabbing him. Same for Karen McCarron, Gigi Jordon - all of them. The only parent I ever felt a bit of sympathy for was the Dad in Canada who shot his son and himself - quick - painless (?) and done.

jen

Oh she's 'outraged' alright, pretty much about everything except that that poor child was kept so long with no REAL medical diagnosis or help to where the mother was beside herself. That's Scienceblogs for you. As I said earlier, complain to National Geographic which owns that slime. I notice they don't exactly advertise that fact. I hope Loyola is held accountable.

Victor Pavlovic

Larry, I think you're on to something with Dr.Wakefield being a possible witness for the defense, could you imagine all the damage that would do to the medical community as they ignored Alex's vaccine injury.

oneVoice

Loser lilady needs to focus on the real issues.She needs to put her priorities in order.Where did you see her letter?
Thanks again to CBS,Sharyl Atkinson,Polly Tommey and all those who worked on this documentary to highlight the issues that Alex and his Mother faced.Lets just focus on the real issues and identify the changes that we all required to make -as a caring society-so that a tragedy like this never happens again.

Carol

I read the letter that lilady said she sent to CBS. She is outraged that "semi-nude" Alex's genitals were barely covered. (Yes, I've often thought the big problem with Jesus on the cross was that he wasn't covered up properly.) No mention of Alex's intestinal lesions.

It's a strange letter.

Shell Tzorfas

WHO really killed Alex? ...
The Doctors WHO shot him with Aluminum, thimerosal (Mercury) embalming fluid, fetal cells, rats brains, parts of cows, pigs, caterpillars, ether and more in the name of health. The SCHOOL system that did not send viable home services or place him a nurturing, caring environment, the Medical Staff that did not DETOXIFY him; the Spiritual Community too buy to help, the ER doctors whose training in Autism was close to nonexistent, the Neighbors who hid their eyes, the Insurance Companies that waged a battle, the MEDIA, that hides the increase of illnesses from the viewers as 1 in every 6 children have been afflicted with Developmental Disabilities starting in 1991 when all newborn babies get a shot for a sexually transmitted disease that they CANNOT get,the Psychiatrists that did not give him relief, and the surrounding communities which include all.... Shell of,"Recovering Autism, ADHD, & Special Needs."

Carolyn Flannery

Let's start envisioning what we want. In the spirit of the March on Washington, which took on impossible odds as well, speaking truth to power, let's start to dream.
---All parents out there, who realize that vaccines hurt OUR children, conduct a "no vaccine sit in" to support us. They vaccinate according to the schedule before autism hit, and say "no" to ALL flu shots and all vaccines that are not on that original schedule, to FORCE the CDC and the medical establishment to immediately get the poisons out, identify the children at risk, and decide which vaccines ARE important, really matter.
--People in insurance companies, vaccine industry, doctors offices, large practices, with access to the truth, will blow the whistle, show us what they know. They will be so grateful they were on the right side of history, of the truth. They will play a part, and some have already suffered terribly for their early outspokenness. But they will be seen as heroes. They will never know how many children they saved. Oh yes--that would be 1 in 35 boys. 1 in 80 children . . just from AUTISM. What about the other issues that we would be saved from?
--Everyone will finally get that the "climate change deniers" were the "Vaccine Damage deniers" . So many people had that backward. . . so many people did not want to believe. And the worse it got the harder it was to believe. That's the hallmark of every widespread crime against humanity. Ann Rule didn't want to believe that her friend Ted Bundy was a serial killer because he saved the lives of potential suicides on a hotline . . . and the world can't stand to believe that Medicine can cause so much damage because it does emergency medicine, and so many other types of medicine so well. Even good doctors can't face this. Those who care too much are paralyzed by fear and cognitive dissonance.
--In my dream, Andrew Wakefield and Dr. Krigsman get the Nobel Prize for Medicine. And Jill James, and the Geirs, and Martha Herbert (and nominate your own!)
--A safe test is developed for pregnant women that identifies which Moms and which infants cannot safely get flu shots or the typical vaccination schedule. When vaccines ARE necessary, they are given glutathione or some other supplements to ameliorate issues.
--All Neurotoxins are removed from Vaccines.
--Everyone respects chelation and other therapies, and they become fine tuned and mainstream, just as treatments for diabetes or cancer or other conditions are respected and honored and fine tuned--and covered by insurance .
--Whistleblowers are protected, and those who knew but lied, in the media, in the insurance companies, in the vaccine industry, are prosecuted to the fullest extent of the law.
--Every parent with a child with autism is acknowledged for tragically sacrificing at least some aspect of the future of their child and family for 'herd immunity'. Every child and parent is compensated depending on various levels of severity.
--Families of SIDS victims that were actually victims of vaccination-toxins are identified and allowed to pursue legal actions as they see fit. And they are allowed to tell the truth --Everyone who got a settlement is allowed to tell the truth. Gag orders are lifted.
--The protection against liability is removed from vaccines due to the fact that this horrible multiple-decade experiment proved that liability is necessary to protect public safety. --Anyone on the Vaccine Court or HHS who had a conflict of interest is fired and exposed.
--All criminals who knew about Vaccination damage or SHOULD HAVE KNOWN and all insurance companies that refuse to cover ABA and speech therapy while rejecting doctors who refused to vaccinate are sentenced to working in classrooms with severely aflicted autistc children and adults for the rest of their lives. If they are not empathetic enough to do this without monitoring, then they are sentenced to solitary confinement until they develop such empathy. Not as a cruel and unusual punishment but because that is what they sentenced our children to, because they didn't bother to figure out ways to vaccinate that did no harm. They didn't bother. They didn't care.
--Treatments are developed that work, are covered by insurance, and reverse autism in a majority of children (Yes, it's a dream).
--All DAN doctors, alternative doctors, doctors and nurses who 'got it' , doctors who spoke out, and journalists who saw the truth and risked their careers to speak out, are honored and thanked and redeemed. The public flocks to them, their colleagues admire and respect them, they are given positions of power and honor throughout the world.
--Finally, the world finds out who REALLY had the issue with EMPATHY. Who REALLY had rigid thinking. Who really couldn't add 2 and 2 together and see what was causing autism. It's the Medical Establshment, People.
--We will find out who profits from putting mercury in vaccines. Who profits from seling mercury? Who profits from poisioning our rivers and oceans? Who are these people and why do they have so much control?
--The people who need meds to cope will no longer be the parents, or our children--they will be the ones who have to admit that they knowingly, and willingly, caused severe pain to children over and over because they didn't bother to figure out how to vaccinate in a way that did no harm or how to mitigate or prevent harm. Instead, due to their incompetence and rigid thinking, they simply pretended no harm was caused. This denial will forever haunt those who didn't speak out as soon as they grasped it. If you are one of those people, Speak OUT NOW. You can make a difference, you can make this happen, and you can replace your guilt and dread with action, change, and healing.
--the age of autism will fade into the history books of 1000 years from now as this amazing testament to stupidity, blindness, and greed, that got trumped and overcome by parents, great doctors, great journalists, brilliant research and ultimately, courage.
--Our autistic children will recover, and have healthy children of their own, and we will get to delight in our grandchildren's normal childhoods, the childhood that was stolen from our own children.

Benedetta

Martha I am glad you turned it around.

But this bowel disease thing like all things with damaged hypothalamus does not have to be alike.
And as for enviromnental -- what were you doing before his birth - living out in the middle of a huge treated rose garden and flinging the pesticide dust everywhere?

How about raising tobacco - boy, they used the pesticides at the beginning process - as the families all joined in to help - even the small one to pull the plants from the beds and replant them.

or is it more likely that you and your husband had been vaccinated before giving birth?
Just something to think about bfore we all start worrying about - a car actually is parked in our garage that is part of the house.

John Stone

I believe that it is quite possible that Ne'eman began genuinely trying to advocate on behalf able autistic people in school who were unsupported and bullied (not an insignificant issue) but he quickly found political patronage and it became something else. If he were responsible he would see that he is being used.

Barry

The claim that Ari Ne'eman has autism, is like the claim that Brian Deer is an "award winning" journalist.

Or that Paul Offit is one of the world's leading "experts" on autism.

Or that Autism Speaks is a "real" autism advocacy organization.

Anyone with a child on the spectrum, should know right right away that the Ari Ne'eman thing is just another cruel media concoction. I mean come on... the Autistic Self Advocacy Network ?????

Anyone who has the presence of mind to 'self advocate', whatever the hell that even means, does not have autism. They have an acting job.

Larry

Will Dr. Wakefield and Dr. Krigsman be testifying on behalf of the Mother? Surely they will be able to speak about the horrible conditions that her son endured, right?

What about the lack of support when it was demanded!!! If they can't get a forum, then why not use this as the means to get the message out there as to what these parents are going through!!!

How about getting the real Science up in front of the Court and on the public record!

interesting


If Ari claims to be autistic then by his own diagnosis, he cannot be an advocate for the autistic population. One of the key characteristics which make it so hard for people with autism, whether verbal or nonverbal is the "theory of the mind" problem. They are unable to see a perspective other than their own. Ari has demonstrated this to our community time and time again.

Carolyn Flannery

@patricia meant to say yes they look like measles

Carolyn Flannery

@patricia --brilliant point! the lesions do like like eczema. eczema another name like autism that simply describes a symptom. Also --eczema--could the bowel have eczema and could that be a result of heavy metals--and could that set up the toddler for leaky gut and immune issues including vulnerability to more damage? My dr in 1964 refused to give me the small pox vax
Because I had eczema and he had observed issues. In 1970 a study proved he was right and children with the small pox vax or a sibling who got it who had eczema could end up in the hospital.
So is there a link ?

oneVoice

So in summary:
1.No support,diagnosis or proper care for Alex.
2.Mistreatment and abuse-four point restraint-for 12 days.
3.His Insurance carrier-refuses to pay for further inpatient care.
4.We have a mother,who is "beyond exhaustion and despair".
5.A total health care system failure.
I just would like to know,WHERE are the Doctors,the Nurses,the Social workers,the support system for Alex and his Mother???!!!Where is a the TEAM??? IS THERE A TEAM???
6.Doctor Andrew Moulden said: "THE SYSTEM IS LOST AND WE NEED TO FIND IT."
7.Loyola University Medical Center and the 12 days Alex spent there NEEDS TO HAVE A PUBLIC INQUIRY AND INVESTIGATION DUE TO THE ABUSE AND NEGLECT OF HIS CONDITION FOR 12 DAYS!!!
8.Please give us the Loyola hospital's phone numbers and contact information so we can let them know just how we feel about their abusive and negligent practices.
9.We must fight together to make the changes we want to see and to create a better future for our children.Thank you.

KFuller

What struck me was Ne'eman's title...Government funded Autism Advocate? Where the hell was he when Alex needed him? does he advocate for all?? I'm thinking not. Where is my son's government funded advocate?

david burd

john stone: thank you, you affirm my point that Wakefield was NOT a lone renegade, It's all about publicity as the Mainstream Media gets $billions annually from Pharma advertising revenues, thus always corrupted in their reporting.

So the public is perpetually conned by advertising and "news" about a few measles cases somewhere in the U.S. (horrors, all my siblings and neighborhood kids had measles as a normal passage of childhood). Or mumps cases, whatever - incredible propaganda always generating false fear.

Cynthia Cournoyer

How did certain ingrained popular belief of the past finally change? How did we go from flat earth to round? How did we go from blood letting, to not? How did we get from not washing our hands to washing our hands? What exact mechanism took place? How do some drugs get pulled from the market forever? And some perpetually torment us? How do you get science to turn on a dime? How do you go from accepted sound bites of "safe and effective" to "....the greatest threat to the health of our children?" How? How on earth does that happen? And the bigger question is, how many centuries do we have to wait?

jen

If you are sick of how autism is covered on Scienceblogs, I would encourage you to write or email National Geographic, which actually owns Scienceblogs. I am sick to death of their bizarre attempts to equate vaccine questions to MSBS or child abuse. I don't think it exactly " inspires people about the planet" to be engaging in 'poll crashing', hate campaigns (against people such as Ms. McCarthy), horrible language (I.e. "take a flying fvck at a rolling donut..." this said to a doctor, no less). All this besides their uneasy mix of advertising and science (see 'Pepsigate' or the Gaia Vince article that was spiked because it was critical of a potential advertiser). Some of you may have other troubling concerns to add.
www.nationalgeographic.com
[email protected]
Main headquarter address:
1145 17 St. N.W.
Washington DC
20036-4688

Just My Two Cents

@John Stone. I too think should he should emphasize the medical struggles of those with more severe forms of Autism, but he won't. We know that. We can't control how he communicates. We can only control how we communicate. I think being very specific about the kinds of Autism we are talking about could better help separate his case from ours.

Twyla

So many excellent comments below!

Mom23boys

Wish there were more doctors like Dr. Krigsman. What about those of us who have children with damaged guts who don't have access to the Loyolas of the world and not the Dr. Krigsmans?

Martha Moyer

It was really something about Alex and his bowel disorder. I think there are probably many different types of bowel disorders and autism. Mine who is nearly age 40 had a Megacolon problem and couldn't push out feces. He could not do a GI exam because he couldn't be cleaned out for it. He does not have regressive autism. He can not communicate well, has IDD, OCD as well. He had autism at birth. A bowel cleanout device that we found out about changed his aggressiveness to calm. We need to realize not all are vaccine-related but some might be related. Some might have environmental issues as cause. We need research. We especially need adult research. If people hurt and can't explain then they certainly may become aggressive.

Birgit Calhoun

Ari Ne'eman must be an autistic wannabe. Like, it's sort of fashionable. Yea, and autistics are like the Rainman; they are so smart. Except Mr. Ne'eman just doesn't cut it in that role.

Unfortunately Alex had to die before his bowel disease could be treated. My son's lesions were found after he had died. I wished somebody had cared then. It makes me so angry that the Hippocratic oath is worth so little. I do hope the hospital and doctors who treated Alex with neglect and shackles get sued. And what about the mother and the caregiver. They would not be accused of murder if the doctors had done their jobs.

Who would be able to sue? I would have had a really hard time suing. It costs too much.

Natasa

Jeff C, you absolutely nailed it!!

Patricia

Interesting how that gut scan looks remarkably like it's covered in the pustules of a measles rash.

I cannot begin to imagine the pain that poor boy suffered.

barbara j

If they were to compare non ASD children, against ASD children for this bowel disease they would likely find it on both sides. The MMR causes it, they need to compare non vaccinated children against the vaccinated, there is no other way to do this. My son with crohn's,from his measles vaccine, started early, I was sending stool samples packaged for university laboratories before his third birthday, he was NOT diagnosed for many years. My other son, spent four months after his aged 4 measles shot, screaming in pain, he could go nowhere, and had to drop out of pre-school. Another son, and I do NOT care who thinks this can not happen, had a very much measle shot reaction following his brother's shot. YES. Within months he lost his language, had to sleep with me because he's fair and needed quick dirty diaper changes four times in his sleep, and many more during the day. He does have ASD. I've had three in screaming pain after exposure to measles vaccine, with one very verbal little four year old who screamed "please help me mommy, I can't stand the pain". I was a horrible mother, that's the conclusion , I was told to seat my children on potties at certain times of the day, because of my mothering they would withhold bowel movements, leading to cramping and diarrhea . We all cried a lot, as I cry each time I think about Alex. We allow these tyrants , who likely have withheld this knowledge to promote their profit, to horribly harm our children. And while they can hold up a death among an infected group with street banners, they won't accept the deaths of those like Alex, and others who died as a direct result of their MMR to be counted.

Jeannette Bishop

Alex's story combines the worst that the mainstream needs to see and re-evaluate:

Denial and abandonment of the vaccine injured.

Resistance to study or offer non-pharmaceutical treatments, though fairly open to trying pharmaceuticals for off-label use.

A tendency to, based on house-of-cards science, use "anti-psychotics" first or exclusively, then institutionalization/restraint to manage the "anti-psychotics" failure (or effects) when needed.

The tyranny of forcing unwanted treatments with involvement of the unaccountable CPS.

Regarding the seemingly close-minded view of some neuro-diversity advocates, I wonder if the fear of being treated much like Alex lends itself to wanting to believe the form of Autism that they live with, manage fairly well, maybe even turn to advantage is independent of environmental shaping (maybe it is for them), but I don't fully understand the resistance. I personally want to know if and what exposures shaped the more "diverse" parts of my personality or experience, and there are definitely some issues I would prefer to reverse, though, as things are now, without "mainstream" help.

I also truly suspect I might not have survived in infancy the exposures that have taken away, and set back much of my daughter's development. I think we are on a self-destruct course with the assumptions of "defective" genes as cause of various disorders trumping considerations of industrial exposures. The diversity of the apparently most sensitive should be diligently heeded and valued and protected as a warning and protection to us all IMO. Our current course actually seems to be leading to a narrowing of diversity in the human population.

jennifer

This news seems to have shut up the Respectful Insolence crowd somewhat except that "Lilady" has called upon people to contact CBS and complain about this being aired. We should call in and thank them.

Truthseeker 2

Eileen, "23 Signs You're a Narcissist though Call Yourself a Sensitive Introvert. Huffpo. Maybe Ari is just a narcissist.

Jeff C

Ari Ne’eman knows nothing of my son, nothing of the pain he suffered, nothing of his social isolation, nothing of his seizures, nothing of his physically harmful out of control meltdowns, but most of all, he knows nothing of his recovery. I do. We are so blessed in that my son was one of those that responded to biomedical. Today, he is a happy third grader doing well in school with many friends. His life was turned around and he is extremely grateful. Although he had limited speech and couldn’t tell us back then, he was acutely aware of his situation and remembers it. He’s now told us of the gut pain he used to endure, the loneliness, of wanting to participate but being unable to respond, seemingly unable to make his mouth and muscles respond despite intentions being formed in his brain. He remembers all too well, enough so that he is just as vigilant with the diet and treatment as we are.

Although he was diagnosed as being ASD when he was four, it now seems clear that he was actually suffering the neurological manifestations of malnutrition. His gut was akin to a war zone, unable to properly digest and absorb his food, leading to bacterial overgrowth from all that undigested food rotting in his large intestine. Instead of listening to the pediatrician who wanted to drug him with psychotropics, we pursued biomedical and it changed his life. I realize it doesn’t work for everyone, and our prayers go out to those who have tried it and have not seen the results we have. But it is indisputable that it does work for some.

To Ari Ne’eman and the rest of the neurodiverse crowd, we healed our son from a disease, how hard is that to comprehend? We didn’t try to change his skin color, his religion, his sex, or any of the other ridiculous comparisons you try to make. He had a physical disease that led to altered brain functions. While we would have loved him no less if he hadn’t responded to biomedical, the suggestion that we should have left him in his former condition and “celebrated” his diverseness is almost too vile to contemplate. Doing so with any other treatable condition (celebrate juvenile diabetes?) would be grounds for arrest on child neglect charges.

It’s called Autism Spectrum Disorder for a reason, “spectrum” being a key word. Per the DSM, the diagnosis is based solely on a collection of behaviors. As an umbrella diagnosis, it is likely an assortment of physiological conditions, with different causes, leading to similar manifestations, hence the differing levels of incapacitation and responses to biomedical. You are implying that since some can lead a fulfilling life (as you have) then no one should be treated as it might make others afflicted feel bad about themselves. Yeah, well not my problem. In a general sense, it’s this ridiculous walking on eggshells mentality that has resulted in a generation of poorly prepared (but with high self-esteem!) neurotypical young adults now unable to find jobs. The world is a tough enough place for young adults without ASD, how will this self-esteem pandering help those with it? Warrior parents will do anything we can to help our children be healthy, self-sufficient, and prepared for life’s challenges, even if it causes some hurt feelings among the overly sensitive. We save our compassion for those afflicted who aren't able to do so.

Thank God, you don’t speak for my son.

Hera

Truthfully, I am hoping at this point that Loyola gets sued .The cause of Alex pain is undeniably obvious. Tying him up in restraints and giving him psychiatric meds for weeks while refusing to scope him ( something another organization managed to do just fine , apparently):hard to justify it.
Hope there are a lot of very ashamed doctors and nurses at that hospital right now. Maybe Loyola could start a fund in Alex name to have sedated scopes paid for when kids have Medicaid insurance?
Re Ari;I wonder if he knew what the scope showed before he gave his little speech?
If he didn't and just saw the scope now, I wonder how he feels. Did his organization do anything to help with Alex while he was alive and was suffering in pain from an untreated medical condition?
What part did his organization play in all this?
I'm guessing Ari always bought into the fact that these children had no pain or medical conditions.

I wish there was someone there to help the Mom ( who I think probably was going insane) make the choices that would have kept her son alive. Even if he had to be sedated for a month while his stomach was treated. Insurance companies can be argued with. What a terrible tragedy.
May Alex rest in peace.

Twyla

In the context of what this news story showed about how much Alex suffered and how much his mother loved him and suffered too, Ari's comment about an "ideology" is absurd. Ari is there because that kind of viewpoint is part of the story, and also to make the point that of course murder-suicide isn't being recommended. But of course Alex's mom's problem wasn't an "ideology" but the terrible difficulty of finding help and effective treatment for her son in a world that thinks autism is purely psychological and where the work of Dr. Wakefield, Prof John Walker-Smith et al was scuttled instead of built upon. A few doctors such as Krigsman and Buie are moving forward with investigating and treating the kinds of bowel disease common among people with autism, but for Alex help came too late when his mother was already at her wit's end after many months of little sleep, being beat up, and seeing her son suffer. I'm not clear on what actually happened at the end - it seems they were being offered help. Yet somehow they were still home alone the three of them, dealing with the same problems. At any rate, it is a tragedy which had it's origins in the failure of mainstream medicine to provide effective treatment to Alex. His treatment for GI issues should have started years ago. I look forward to seeing more of the story told by Autism file. Rest in peace, Alex.

cmo

28 studies from around the world that support Dr. Wakefield’s findings:

1. The Journal of Pediatrics November 1999; 135(5):559-63
2. The Journal of Pediatrics 2000; 138(3): 366-372
3. Journal of Clinical Immunology November 2003; 23(6): 504-517
4. Journal of Neuroimmunology 2005
5. Brain, Behavior and Immunity 1993; 7: 97-103
6. Pediatric Neurology 2003; 28(4): 1-3
7. Neuropsychobiology 2005; 51:77-85
8. The Journal of Pediatrics May 2005;146(5):605-10
9. Autism Insights 2009; 1: 1-11
10. Canadian Journal of Gastroenterology February 2009; 23(2): 95-98
11. Annals of Clinical Psychiatry 2009:21(3): 148-161
12. Journal of Child Neurology June 29, 2009; 000:1-6
13. Journal of Autism and Developmental Disorders March 2009;39(3):405-13
14. Medical Hypotheses August 1998;51:133-144.
15. Journal of Child Neurology July 2000; ;15(7):429-35
16. Lancet. 1972;2:883–884.
17. Journal of Autism and Childhood Schizophrenia January-March 1971;1:48-62
18. Journal of Pediatrics March 2001;138:366-372.
19. Molecular Psychiatry 2002;7:375-382.
20. American Journal of Gastroenterolgy April 2004;598-605.
21. Journal of Clinical Immunology November 2003;23:504-517.
22. Neuroimmunology April 2006;173(1-2):126-34.
23. Prog. Neuropsychopharmacol Biol. Psychiatry December 30 2006;30:1472-1477.
24. Clinical Infectious Diseases September 1 2002;35(Suppl 1):S6-S16
25. Applied and Environmental Microbiology, 2004;70(11):6459-6465
26. Journal of Medical Microbiology October 2005;54:987-991
27. Archivos venezolanos de puericultura y pediatría 2006; Vol 69 (1): 19-25.
28. Gastroenterology. 2005:128 (Suppl 2);Abstract-303

JerseyGuy

Dan, I think Sharyl Attkisson produced a superb story, without reservation. It focused attention on the scandalous neglect of children suffering from autism, it gave invaluable publicity to the Autism Media Channel, and it allowed Ari Ne'eman to hang himself with his own rope.

Eileen Nicole Simon

Ari Ne’eman never had autism. According to his blurb on Wikipedia he was verbally advanced. He may display other “traits” of autism, but he is no advocate or spokesman for people like my son who will soon turn 51. My son is now “high functioning” and has co-authored two memoirs with me, but developmental language disorder was his primary handicap as it is for most people with autism. See our books at http://tinyurl.com/d3hqlye.

Ne’eman clearly grates on the sensibilities of those of us who have had our lives severely disrupted by autism. Maybe he should try to convince people he recovered from polio, diphtheria, tuberculosis, cancer, syphilis, leprosy, or perhaps sclerosing panencephalitis (subsequent to having measles), etc. and gain the favor of people whose lives and families were impacted by these diseases.

Benedetta

Loyola Hospital:
Did the insurance company pay that hospital for Alex's care?
Did they take it all and then the insurance companies reached their limit on cost?

Did Loyola take it all till when there was noting left, --and finally real answers came and help could have been acheived --- the financial resourses had been eaten whole by Loyola Hospital?

Diane W Farr

Ari lacks the ability to sympathize and empathize.

Anne McElroy Dachel

Look at the detailed coverage this story is getting in the UK Daily Mail. What the American media refuses to talk about is in this report, even the video of Andrew Wakefield's appeal for help.

http://www.dailymail.co.uk/news/article-2407771/How-Dorothy-Spourdalakis-killed-autistic-teenage-son-Alex-restrained-hospital-bed-12-DAYS-doctors-understand-stomach-illness.html?ito=feeds-videoxml

"...The following day Dorothy informed us that the hospital could find nowhere that would take Alex and that his insurance carrier had refused to pay for any further inpatient care at the Lutheran General Hospital.

It appears that, as a consequence, he was discharged from that hospital despite his precarious position and that of his carers. It is our opinion that Alex's tragic death reflects the abject failings of a medical system that has

no effective answer to the autism crisis."

Anne Dachel, Media

Beyond a Mad, Mad World

Ari has a brain injury in which he is able to function.
It is okay that he is interviewed on this matter, but it is not okay that interviewers without brain injuries go running to him to listen to what he has to say on all autism matters.

Just helps not at all.

Meanwhile:
bone marrow transplants eradicated the chrons.

http://www.fhcrc.org/en/diseases/crohns-disease.html

Tons of others articles says bone marrow transplants get rid of Irritable bowel syndrome.

More research seems to be saying that the hypothalamus drives the metabolism of bone marrow.

It seems to be a cycle - the bone marrow gives information to the hypothatlamus that there is reason for the hypothalamus to produce inflammation.

If they had let Dr. Wakefield do the science instead of this crazy Deer episode we would have had answers by now.

Alex would have gone to the hospital, and actually have been treated. He would not have been just sent home with two people who did love him - lost at what to do to help him all on their own.

Anne McElroy Dachel

What did Ne'eman mean..."Lack of help is no excuse for murder"?
It sounds like the prosecution's argument.

"Lack of help" covers up and dramatically trivializes what was done in Alex's case. This boy was brutalized by a system that will not admit what autism is doing to our children.

Imagine if a child with cancer were admitted to a hospital and instead of treating the real medical problem, doctors simple strapped him to a bed for two weeks.

No one was interested in what was making Alex act out in pain.

Anne Dachel, Media

John Stone

David,

Of course, Prof John Walker-Smith - senior author of the paper and the founder of paediatric gastroenterology as an independent study - first published on the subject of autism and bowel disease in 1972. There was of course no connection at that time made with vaccination but equally the component vaccines of MMR were already in use.

http://www.bmj.com/content/342/bmj.c7452/rr/636171

In his autobiography Walker-Smith commented on his career:

‘Looking back I am astonished that I was able to study as many as 116 child autopsies during the period 10 October 1967 to 11 August 1969. That so many children should have died in a children’s hospital during this period of one year ten months shows how much we have advanced during the following thirty years. During my last five years at the Royal Free not one child died of a gastroenterological cause.’ [John Walker-Smith, Enduring Memories, 2nd edition 2012, p. 113]

But the medical establishment had their revenge. First of all when Walker-Smith retired in 2001 they closed down his department, and then in 2003 they unleashed that great expert on gut pathology Brian Deer to go and sort it all out for them - they have been hiding behind him ever since.

I only note that in the past week Sanjay Gupta and Nancy Snyderman have both hinted that Andy may not be so bad an egg, so perhaps we are beginning to live in a post-Deer era. Who knows?

John

Bob Moffitt

First of all .. the mom and care-taker of Alex Spourdalakis expected their beloved child would receive "treatment" that would greatly diminish the tremendous pain he was obviously suffering .. instead .. they were forced to witness what amounted to the "torture" of Alex .. who was left lying in restraints .. writing in excruciating pain .. for TWELVE days.

Secondly, the lawyer for both mom and care-taker is considering an "insanity" defense. Should that happen .. the obvious "legal" question for the jury then becomes:

Were there certifiable mitigating circumstances that drove these two obvious loving care-takers to commit an act of insanity .. such as .. being forced to witness their loved one suffering excruciating pain that went untreated for 12 days?

In any event, I wouldn't want to be a member of that hospital staff or administration .. under oath and threat of perjury .. testifying to what they did or did not do to treat Alex as humanely as he deserved.

In a court of law .. the staff and administration ought not be allowed to protect themselves from exposing the despicable treatment they afforded Alex .. by claiming to do so under vigorous cross-examination would somehow violate Alex's "privacy" rights.

As for Ari Ne'eman .. no one promotes an .. "ideology that preaches people with disabilities are better off dead".

What people do promote .. and what Mr. Ne'eman callously disregards .. is a "humane" ideology that expects people with disabilities to be "treated" .. not "tortured" .. when forced endure untreated excruciating pain.

Victor Pavlovic

ARI needs to get re-diagnosed for one and be taken off the autism spectrum, it is obvious he doesn't belong there and does not represent the autism community in general. Why in the world anyone would want interview this guy, for this story in relation to all the people she could have is beyond me. Finally, I do want to thank Sharyl Attkisson for her dedication to those with autism, I believe her empathy leads her to tell these stories.

david burd

Dan, The fact that Lancet paper in 1998 had 11 coauthors in addition to Andrew Wakefield is NEVER mentioned - in fact it is concealed by the mainstream media who repeat their lies that Wakefield was "discredited" and his work was "fraudulent."

These 11 other coauthors were the finest doctors and laboratory experts in the UK, focused on the bowel diseases of children. It is inconceivable all these professionals conspired to author a phony medical paper that took years to bring their facts together.

What is surely true is the Medical-Pharma Industry lynched Wakefield (and his coauthors) using the despicable Brian Deer as their hangman. And the American press conveniently and deliberately and shamelessly acts as if Andrew Wakefield was a renegade Lone Ranger.

david burd

John Stone

Just my two cents

Of course, Ari Ne'eman can comment like anyone else, but he ought to be intelligent enough to realise that these circumstances are quite different from his own (not to mention the recourse to straw man arguments). He has given a poor account of himself.

John Stone

I suppose Ne'eman is instructively absurd and pompous. Instead of acting as an all purpose autism mouth he needs to attend to what happens when someone is non-verbal, desperately sick and in pain, the system (of which Ne'eman has become a pillar) turns a blind eye, dumps on and scapegoats parent and carer till they have no solutions, are most likely destitute and have no further recourse to any help.

Instead of pontificating could he please explain what he would do? Let's hear it now.

Just My Two Cents

Alex had Regressive Autism, like many of the children of those who read AofA. Ari does not. He has a mild form leaving him able to speak eloquently and go to college, which is great. I think we need to start separating Regressive Autism from other forms in terms of how we speak about it. As long as we use the plain word "Autism" on tv and in articles to describe the subset with mitochondrial dysfunction, severe bowel disorders, etc Ari can comment in interviews as if he has the same condition, because he does have Autism - but he does not have Regressive Autism. Think about it.

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