Editor’s note: This is an extra “bonus” post. Basically, it’s a revised version of a post I did at my not-so-super-secret-other-blog last week. The issue, however, has disturbed me so much that I felt it appropriate to post it to SBM as well. Fear not. There will be a new post by yours truly on Monday.
Sometimes, in the course of blogging, I come across a story that I don’t know what to make of. Sometimes, it’s a quack or a crank taking a seemingly science-based position. Sometimes it’s something out of the ordinary. Other times, it’s a story that’s just weird, such that I strongly suspect that something else is going on but can’t prove it. So it was a few months ago when I came across the story of Alex Spourdalakis, a 14-year-old autistic boy who became a cause célèbre of the antivaccine crank blog Age of Autism.
I first noticed the story in early March when perusing AoA and came across a post by Lisa Goes entitled . In the post was a shocking picture of a large 14-year-old boy in a a hospital bed in four-point restraints. He was naked, except for a sheet covering his genitals. A huge gash was torn in the bedsheet, revealing the black vinyl of the hospital bed beneath. The boy’s name, we were informed, was Alex Spourdalakis. Further down in the post was another, equally shocking, picture of Alex that, according to Goes, showed severe dermatitis on Alex’s back due to the hospital sheets. The photos shocked me for two reasons. First, if the story was as advertised (something always to be doubted about any story posted at AoA), for once I thought that I might be agreeing with Goes and thinking that AoA was actually doing a good thing, as disconcerting as that possibility was to me. Second, however, I was extremely disturbed by the publication of such revealing photos of the boy. Undoubtedly, Alex’s mother must have given permission. What kind of mother posts pictures like that of her son for all the world to see? Then there appeared a Facebook page, , which pled for readers to help the Spourdalakis family.
As I said, something just didn’t seem right at the time.
Now I know that something most definitely wasn’t right, but I still can’t yet figure out what was wrong at that time three months ago. What is wrong now is that a little more than a week ago Alex was brutally murdered by his mother and caregiver, , in fact. The :
Convinced that Alex Spourdalakis’ severe autism was growing worse, his mother and caregiver allegedly planned for at least a week to kill the River Grove teenager and themselves.
But the alleged murder plot initially went awry last weekend when the stocky 14-year-old didn’t succumb to an overdose of his prescription medications.
After waiting for several hours, Dorothy Spourdalakis, fatally stabbed her 225-pound son four times with a kitchen knife, then cut his wrist so deeply she nearly severed his hand, Cook County prosecutors said Wednesday.
His caregiver, Jolanta Agata Skrodzka, later stabbed the family cat with the same knife, then washed the utensil and put it back in a butcher’s block, prosecutors said.
Their suicide pact never succeeded: Both women took drug overdoses, then locked themselves in the bedroom with the slain teenager.
They were found semi-conscious inside the second-floor apartment on Sunday afternoon when Alex’s father and uncle came to check on the teen, prosecutors said as the women appeared in court to face first-degree murder charges.
More details are described in this story about the murder. Dorothy Spourdalakis and Alex’s caregiver Jolanta Agata Skrodzka had apparently discussed the plan to kill Alex using an overdose of prescription sleeping pills and explained why they did it in a letter. Apparently they killed the cat because they didn’t want it to end up in a shelter after they committed suicide. We also learned that police had been to the house several times to assist with transporting Alex to doctors’ appointments because “he was big and strong and unwilling to go to the doctor.”
Over the last three months, as I occasionally read articles and posts about Alex Spourdalakis, going back to March, I increasingly got the distinct impression that there was more going on that met the eye. Now, on the one hand, Lisa Goes might have been right. That has to be conceded. But while I occasionally looked at stories about Alex on AoA, they just didn’t seem to pass the “smell test” to me. Something, it seemed to me, was being left out. Neither did a lot of the claims being made about the care Alex was receiving strike me entirely credible. At the very least, it was very clear that a highly biased, one-sided version of events was being presented. For instance, Goes claimed that Alex was kept in four-point restraints 24 hours a day at two different hospitals, Gottleib Hospital and Loyola University Medical Center (LUMC), :
According to her, at 14 years of age, Alex has a diagnosis of severe autism and cognitive impairment. He is non-verbal. In October of 2012, Alex began to suffer neurological events that prevented a healthy sleep cycle. He was awake for many hours at a time. Agitation and aggression ensued as a result of sleep deprivation. During this time, symptoms and behaviors that were indicative of severe gastrointestinal distress developed as well. A cycle of constipation, diarrhea and formed bowel movements surfaced and became a chronic problem. On February 16th at 5:00 am, with the assistance of police and paramedics, Dorothy took her inconsolable and highly-distressed non-verbal child to Gottlieb Hospital in Melrose Park, Illinois.
Because of Alex’s physical aggression, he was placed in locked restraints. At that time, Dorothy did not know the ER would be their home for the next several days, as Alex lay naked, in locked restraints, suffering bouts of violent vomiting, severe constipation and diarrhea. Neither she nor Alex bathed for the next 13 days while hospital staff and administrators attempted to devise a plan to care for Alex. “He was given Colace for his constipation and sometimes it would take security staff and nurses more than 15 minutes to arrive to help unshackle him so he could use the bathroom,” Dorothy explained. “Alex would scream as best he could when he knew he was going to have a vomiting episode, but security took several minutes to respond so Alex would lay in his own vomit, waiting to be released by a representative of security. He would be wiped down and returned to the same restraints.”
Sure, it was possible that the boy was being abused so horribly, first at Gottleib Hospital and then at LUMC, but the story as presented struck me as implausible, although at the time I had no way of refuting or confirming the increasingly lurid stories being posted at AoA about Alex. For one thing, there are very strict laws these days about patient restraint, particularly when it comes to children. The last time I ever had to order four-point restraints was over 14 years ago, back when I moonlighted as a trauma attending in, yes, the Chicago area, the same metropolitan area where Alex lived and died. Before that I sometimes had to deal with the restraint of patients when as a resident I rotated on the trauma services at the hospitals where I trained. Sometimes patients with head injuries or severe intoxication would be violent and require restraint. There was always a strict protocol that we followed, even back then. My understanding is that the protocols have only gotten more strict. Restraining a patient, particularly a minor, is not something that is undertaken lightly, nor should it be. To believe the AoA account, we have to believe that a severely autistic teenaged boy would be kept in the emergency room for several days (also very, very unlikely) and put in restraints in an abusive fashion at not just one but two different hospitals, continuing after Alex was transferred from Gottlieb Hospital to Loyola University Medical Center on February 28. Actually, it was three different hospitals, because later Alex was shown in four-point restraints at Lutheran General Hospital during his last admission in May. More on that later.
Also missing from these stories was a clear and cogent explanation of why Alex was ever admitted to Gottleib Hospital and then transferred to LUMC in the first place. It’s mentioned in some places that Alex was “inconsolable, highly-distressed and suffering bouts of violent vomiting, severe constipation and diarrhea.” I had to look for clues to explain it, and, I must admit, I still remain puzzled. Certainly, these demanding that LUMC provide what Ms. Spourdalakis considers to be “standard medical treatment,” which to her included gastroenterology. Peppered through various reports were indications that Alex had multiple allergies and GI issues. Having observed a fair amount of autism quackery on the Internet, these terms were huge red flags to me that strongly suggested the possibility that Ms. Spourdalakis was heavily into “autism biomed.” Another hint as to what might have been really going on comes from reports of a care plan conference on March 12. Allegedly (we only have one side of the story given that the hospital and doctors are bound by HIPAA privacy law not to discuss the case), if Ms. Spourdalakis failed to agree completely to the care plan Alex would be .
Elsewhere, I found references to demands that LUMC consult with an “Autism Medical Specialist to ensure Alex’s dietary needs were met to ensure his food allergies and intolerance’s were not aggravating any underlying gastrointestinal or other medical conditions that may also cause adverse behaviors”, which sounded suspiciously like an autism biomed quack. In , Lisa Goes described a visit to LUMC with Jeanna Reed of , whose website if chock full of standard antivaccine and “autism biomed” tropes, such as a section on mitochondrial disorders, banners asking if autism is vaccine injury, and the like. It’s actually a pretty bare-bones website with lots of bugs, but the intent is clear. Besides, it’s obvious (to me, at least) that Lisa Goes is antivaccine, given that she has been a regular at the () . Indeed, in the very same post, Lisa Goes unwittingly portrayed Jeanna Reed as ranting and haranguing Alex’s doctors with pleas to read quack studies and claims that “many of these children present with bowel disease and mitochondrial dysfunction. He could have GERD, duodenitis, esophagitis, ulcers in the small intestines, colitis. How can we know if we don’t test?” This was pure autism biomed rhetoric, leavened with the arrogance of ignorance. When one of the doctors referred to autism as a “mystery,” Goes totally lost it, yelling, “No! No! It’s not. It’s a medical illness that causes bad behavior. All you have to do IS READ*!”
Such is the arrogance of ignorance that leads antivaccinationists to lecture physicians.
Based on what was in retrospect in plain sight on the antivaccine blogs, it’s hard for me not to suspect at least a little bit that Dorothy Spourdalakis was subjecting Alex to “autism biomed” treatments, that she came to know Ms. Reed and thereby spread her story to the wider autism biomed movement at large. If my suspicions are ultimately revealed to be true through police investigation of the murder and in the upcoming trial of Alex’s mother and caregiver, it would certainly explain a lot. Certainly, it would explain why Lisa Goes and AoA rallied to Alex’s cause so enthusiastically. It would also explain why the hero of the autism biomed movement himself, Andrew Wakefield, during Autism One and posted to YouTube on the Autism Media Channel a :
Note that, in this incredibly creepy video (is it just me, or does Wakefield look creepier and creepier each time I see him?), Wakefield stated that Alex was scheduled to go to long term psychiatric care in 72 hours, as if that were the worst fate imaginable for him. He appealed for funds to allow Alex to be transferred to a facility where he would “get the care he needs.” What that facility is, Wakefield does not say. What also isn’t clear is why Alex was back in the hospital again. I say “back in the hospital” because on March 23 his mother published a post on AoA announcing that Alex was being discharged from LUMC. She thanked everyone at AoA, but she also :
It is during times like this we as a family realize our full potential. We know no one will help us unless we help ourselves. The continued abuse, medical neglect, discrimination and ignorance have to stop. Vaccines have maimed too many already and there are many more to come. The CDC’s latest stats confirm that. We are not going away, nor are we giving up. My son Alex is just one of millions of children and adults who no longer will be silenced.
We as a group have been deceived and lied to long enough. Our children have paid and are continuing to pay the ultimate price because of greed. The health care system has failed terribly. It is our responsibility to continue to bring about change.
Please continue to follow Alex on his journey toward better health. Allow us to be a part of your lives. Our strength will continue to come from everyone and anyone who would like to continue with us. Alex will hopefully get the medical testing he needs but was denied until now. So much needs to happen in order for us ensure his recovery and I still need so much help! Please continue to follow my team of helpers for updates and fundraising efforts. I cannot tell you how much I appreciate and value every single one of you who have gotten us to this place. Thank God for the internet and !
To me, this was the strongest suggestive evidence that Ms. Spourdalakis had likely been subjecting Alex to autism biomed treatments. The language was pure “autism recovery”-speak. The antivaccine sentiment was there. So was the conspiracy-mongering against conventional medicine and big pharma. In , I learned that another antivaccinationist and advocate of “autism biomed,” Polly Tommey of the Autism Media Channel, was involved with the Spourdalakis case, and Ms. Spourdalakis claimed that all Alex needed was “something simple, in the country, where he can run around, get the treatment that he needs so he can get better.” For some reason, however, in May Alex was back in the hospital. When the new reports of Alex in the hospital started coming out, even AoA denizens and supporters wondered what had happened, for instance, on the . The response from Jeanna Reed:
He’s back in the hospital. The sad truth is that this will be what is left, the only path…unless we start to treat the MEDICAL conditions, provide an appropriate treatment plan and support the families while doing it. A VERY TALL ORDER but one that has to become the norm. Alex does NOT belong in a psychiatric facility. Sadly, this is the only option so many face when all of the above is not available. We did our very best to try and help them, and will continue to do what we can but it’s not enough. We know so many who (if given the opportunity) could heal. So complicated…at the minimum PRAY for them and again realize this could be any one of our children.
I don’t know about you, but if I had seen this at the time it was actually published instead of now, knowing the ultimate outcome, I would have still found the language ominous. In any case, not long after Wakefield’s appeal, Alex was released from the hospital. Andrew Wakefield provided a statement to the after Alex’s death explaining what happened and covering his posterior in the process:
On Sunday May 26, members of the Autism Media Channel (AMC) went to the Lutheran General Hospital in Park Ridge, Illinois. There we visited the late Alex Spourdalakis, his mother Dorothy, and his Godmother. Alex was in four-point restraint and apparently refusing to eat or drink.
His mother was beyond exhaustion and despair. The main reason for her despair was the prospect of Alex being sent to a long-stay psychiatric hospital and heavily medicated with behavior-altering drugs drugs [sic] without any treatment of his underlying medical problems.
AMC issued an appeal on Alex’s behalf to protect him from this fate. We did not, at any stage, advocate for his release from the Lutheran General Hospital.
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.
In the interests of complete openness, I should point out right now that I used to work part time as a trauma attending at Lutheran General Hospital from 1997 to 1999. It was how I made some extra money while I was a surgical oncology fellow at the University of Chicago. (Chicago is an expensive city to live in, and I didn’t make that much as a fellow.) LGH was a fine hospital then, and I have no reason to think that anything’s changed. Be that as it may, do I detect the stench of self-justification from Wakefield? He’s desperately trying to cover his posterior, but his fetid flatus of blame-deflection leaks out anyway. It’s what he does. Even so, if what Wakefield says is true, it does point out another aspect of this tragedy, namely support for parents with children with special needs.
That being said, what’s also utterly despicable is the reaction of the denizens of AoA and other antivaccinationists to the news of the murder of Alex Spourdalakis. For instance, it is not infrequent to see antivaccinationists , the apparent underlying “logic” being that if he hadn’t become autistic because of vaccine injury then none of this would ever have happened. Such “logic” prevails in the comments of AoA posts about Alex’s death, such as and . For :
Though I can’t support the choice these two women made, it isn’t hard to imagine the desperation and hopelessness they were engulfed in. To watch your precious child suffer for so many years and then endure what this past spring brought for them. They fought and fought the beast head on and felt the hatred against them. It isn’t hard to imagine that they were exhausted. All of this happening in America no less.
No, these two women were, as far as I can tell, offered help but refused it because it was standard conventional therapy. From what I can tell from various blog and Internet articles, they appear to have subjected Alex to biomedical quackery and were unhappy that if Alex were transferred to a psychiatric hospital’s long-term care ward he would no longer be able to receive “autism biomed” treatments. Time and investigation by the authorities will tell if that was the case. Whether that is what happened or not, I nonetheless reject the “logic” of such antivaccinationists such as it is, that only makes sense only if you accept the pseudoscience claiming that vaccines cause autism. While one can sympathize with a parent facing the task of caring for a severely autistic child who is very large, very strong, and very difficult to control, as , autism is not an excuse to kill your child, ever. As :
So one of the reasons I’m really pissed off is because of the usual [eye rolling] “Oh, he’s in heaven now”. My favorite is the thing that one of the groups that was intended to work towards getting Alex out of the hospital was a letter to Alex in heaven suggesting that he thank his mother for stabbing him in the chest. [Sarcastic eye rolling] “Thank you so much for brutalizing me, it’s my favorite”. Because now, you see, he’s in heaven, which I don’t think exists. And he doesn’t have autism.
Harsh? Yes. But it rings true. The entire narrative of the autism biomed movement is that autism “stole” the parents’ “real child” away from them. Since the idea that vaccines cause autism is basically holy writ for the autism biomed movement, that means vaccines “stole” the real child away by making him autistic. Parents who try to “recover” that “real” child are thus viewed as heroic, rather than abusive, because they’re willing to do whatever it takes to defeat the scourge of autism (and vaccines) in order to rescue the “real” child within. One can’t help but wonder whether what was really happening was that DFCS was going to put Alex into a conventional long term care facility because his mother clearly couldn’t handle him anymore and was treating him with autism biomed. Unfortunately, it appears from what we know right now that Alex’s mother seems to have thought that he would be better-off dead than not being given access to what she viewed as “curative” treatments for autism. Events and evidence from the investigation and trial might prove that initial assessment incorrect, but for now it seems to fit with what we know. Was Alex collateral damage in this never-ending war by antivaccinationists against autism? Although what we know now suggests that this might be the case, we just don’t know yet. We’ll have to keep an eye on the results of the investigation into Alex’s murder to find out.
In the meantime, watching the denizens of the antivaccine crank blog AoA is very hard to take, as they rant about how the medical system failed Alex. Maybe it did (that remains to be seen), but what Lisa Goes and Andrew Wakefield did themselves .