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“Autism biomed” and the murder of Alex Spourdalakis

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 to see what the merry band of antivaccine propagandists was up to I came across a post by Lisa Goes entitled Day 19: Chicago Hospital Locks Down Autistic Patient. 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 to be doubted always about anything posted to AoA), for once I thought that I might be agreeing with Goes and thinking that AoA was doing a good thing. 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, Help Support Alex Spourdalakis, which pled for readers to help the Spourdalakis family.

As I said, something didn’t seem right.

Now I know that something 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 over the weekend Alex was murdered by his mother and caregiver, stabbed to death, in fact. The murder was carefully premeditated and truly gruesome:

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 Chicago Tribune 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.”

As I read articles and posts about Alex Spourdalakis, going back to March, I had the distinct impression that there was more going on that met the eye. 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 seem 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), for 19 days:

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 it seemed damned unlikely to me, although at the time I had no way of refuting or confirming the increasingly lurid stories being posted at AoA about Alex. Still, I knew that tere are very strict laws these days about patient restraint. 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 were 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.

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, this Change.org petition 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 to me 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 placed in the care of the Illinois Division of Family and Children Services (DFCS).

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 sounds suspiciously like an autism biomed quack. In this post, Lisa Goes described a visit to LUMC with Jeanna Reed of Autism Is Medical, 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. AIM is antivaccine to the core, and we already know that Lisa Goes is antivaccine, given that she has been a regular at the (Not-So) Thinking Moms’ Revolution. Indeed, in this very 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*!”

Based on what was in retrospect in plain sight on the antivaccine blogs, it’s hard for me not to suspect that Dorothy Spourdalakis was subjecting Alex to “autism biomed” quackery, 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, 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, the brave maverick doctor to rule all brave maverick doctors, Andrew Wakefield, visited Alex during Autism One and posted to YouTube on the Autism Media Channel a video making an appeal for Alex:

Note that I’ve saved this video, in case it goes down the ol’ Internet memory hole. Also 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. He appealed for funds to allow Alex to be transferred to a facility where he would “get the care he needs.” What 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 revealed her antivaccine proclivities:

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 facebook!

To me, this was the strongest suggestive evidence that Ms. Spourdalakis had likely been subjecting Alex to autism biomed quackery. The language was pure “autism recovery” language. The antivaccine sentiment was there. So was the conspiracy mongering against conventional medicine and big pharma. In another story, I learned that another antivaccinationist and advocate of “autism biomed,” Polly Tommey of the Autism Media Channel was involved, 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 Facebook post announcing Andrew Wakefield’s appeal. 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 Daily Mail after Alex’s death explaining what happened and covering his ass 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 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.

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 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. Wakefield’s fame mongering and conspiracy mongering aside, however, if what he 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 blame—of course!—vaccines for Alex’s death, 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 this one and this one. For instance:

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 Jo Ashline says, autism is not an excuse to kill your child, ever. As one blogger put it:

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 boomed. Unfortunately, it appears from what we know right now that Alex’s mother seems to have thought that he would be 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.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

187 replies on ““Autism biomed” and the murder of Alex Spourdalakis”

Every time I see this story I feel like I need to vomit.

As sad as it makes me, I’d bet the use of my remaining functional body parts on the vile, callous murderers receiving a non-custodial sentence. After all, we disabled people, or those of us in need of constant care, are burdensome and monstrous. We’re broken, damaged, hopeless. We ruin lives, rip apart families, and leave suffering and pain in our hideously needy wakes.

Haven’t our carers and families suffered enough? And as for us… better dead than damaged, our murders are blessings, joyful releases, gifts to the poor long-suffering able and NT people of the world, who are forced to endure our terrible ugly presence on a daily basis.

They’ll probably get a slap on the wrist for killing the cat though, she was innocent, after all.

And people still claim ableism doesn’t kill, isn’t harmful. They say that dehumanising anyone with disabilities of any sort, through careless use of language, is just “how it is”. They tell us to “lighten up” and “get over it”.

Goodbye Alex. I’m sorry for your loss, sorry that you were abused and exploited by those supposed to love and protect you, aided and abetted by scumbag charlatans who seek to profit from lives like yours.

I found it telling that they killed the cat, rather than letting it go to a shelter.

Apparently they killed this kid because they didn’t want to subject him to conventional medical and behavioral treatment. His hospitalizations were turned into a circus. I’m in Illinois, there are very strict rules regarding restraint. Also, several agencies, including school districts and DCFS, will fund the residential style care if the child cannot be safely managed at home, or the parents are unable to continue caring for them.

Mom was convinced by the quacks that her son has a progressive illness and the only treatment was ridiculously expensive treatments. I wouldn’t be shocked if we find out that this child was receiving chelation and steroid treatment, which can cause all sorts of behavioral issues and distress.

Just, ugh.

I freely admit that one of the main reasons I choose not to have children is that I would never, never, never been able to take care of a severely disabled child. You are perfectly inside your rights to consider me a monster, but count this:

We aren’t t talking about moderate disabilities, not about problems that can be overcome. As Alex grew older, the probability of him becoming increasing aggressive increased as well as his strenght. I do not condone what they have done, but I can understand it. There are no good outcomes in such a situation.

I noticed in the news reports that the godmother (or whatever) had finished medical school in Poland. Shouldn’t she have known the lethal dose of the pills (whatever they were) for at least one of the three people? To me the survival of the two women suggests that the “suicide attempt” was a sham to get them lesser charges on the premeditated murder.

T – Nobody has said that someone is monstrous for choosing not to have children. I don’t have any, and never will, because it was the right choice in my situation.

It is always better to get to whatever age and regret not having children, than to regret having had them.

That said – how do you know that this was true of Alex:

We aren’t t talking about moderate disabilities, not about problems that can be overcome.

We only have his mother’s word, and those of a bunch of despicable, amoral publicity-hounds who hate anyone not “normal”. We are talking about people who endorse cruelly restrictive diets, chemical castration, bleach enemas, orally administered bleach, electric shock aversion therapy, and all manner of sickening, wildly unethical “treatments” to punish autistic children for being born “cure” children

Autism is not progressive, nor is it fatal. It is misguided at best, an outright lie at worst to state that the situation could only worsen. Many young people become more functional as they become older. There are adults today who were entirely non-verbal, doubly incontinent, and presumed to be learning-disabled as children, who have gone on to move several notches up the spectrum. They’ve been able to find employment that engages them, and are able to mediate their symptoms until such a time as they’re safely at home, and free to stim as much as they want to.

Finally, this little nugget:

I do not condone what they have done, but I can understand it. There are no good outcomes in such a situation.

Now that’s just sh¡te, but I suspect you know that. Read my comment at #1 first, then scroll back here. Murder is never understandable. This was not self-defence, euthanasia of a progressively terminally-ill loved one, it was the well-planned, discussed and conspired, brutal murder of a CHILD because his “mother” did not want her custody revoked due to her biomeddling.

Good outcomes could have included:

Alex moving to a residential school, or to a school where he boarded part time. A group living situation with live-in assistance upon reaching majority, and the possibility of study or work.

Even if none of that were possible, murder was not the answer. He was alert and able enough to knew when he needed the toilet, or to vomit, so he wasn’t the Pet Rock that you seem to imagine he was. He was a person, a child, with unknown and untapped potential. There are parents of children who could never hope to do even that, yet they refrain from drugging them and stabbing them to death in a violent frenzy.

He was exploited, and displayed naked and vulnerable for the world to see, robbed of his dignity, and ultimately of his life, by a movement so disgustingly ableist and perverse that they believe that any child, any person, is better off DEAD than imperfect in any way.

History should have taught us that this mindset leads to unbounded tragedy and horror. It looks like we are doomed to repeat it until we learn otherwise.

@t.

Although not an easy decision, if caring for a disabled child is more than a family can handle, there is the option of giving the child up to be a ward of the state. It may not be the ideal situation, but it is a damn sight better than leaving the child in a situation that is bad for them, bad for the carers and leads to a situation like this. There is also respite care available to give the parent a breather, to regather their strength and have time to let the stress go down a bit. There are options. And from reports, services (though unknown of what sort) were offered Alex’s mother, which she refused.

While I can understand the difficulties and challenges associated with raising a severely affected child, I cannot understand the impulse to kill that child in a very, very violent fashion.

I’m still trying to get my thoughts together on this whole thing. Not sure what I’ll write for a post, but I’m trying to take time to let my emotions settle so I can avoid simply ranting.

@t:

We aren’t t talking about moderate disabilities, not about problems that can be overcome.

Wrong. Autism is developmental delay, not developmental stasis. With proper supports, they could be overcome.

I do not condone what they have done, but I can understand it.

I can’t. The mother and alternate caregiver were offered support. They refused it. It took me a long time to learn to put my hand up and ask for help, but I learnt to. That they refused support and then murdered Alex makes what they did unconscionable.

LW – Undoubtedly so
it happens every fvcking time.

They’ll insist it was a suicide pact and that they can’t live without him, in order to invoke pity and ensure that any punishment is light and fleeting.

If the thousands of prior cases are indicative, these “brave women” will be set free and told what a blessing it is that they survived, that they can now go on to lead “normal” lives.

Autistic people, even severely disabled autistic people, can have a very good quality of life with supports. Autism isn’t progressive. There are many state funded residential programs that care for autistic people when their families are unable to.

I strongly suggest reading Kristina Chew’s blog about her son Charlie if you want to get a picture of what it’s like to live with an autistic teenager on the more severe end of the spectrum. Charlie swims, rides bikes, goes to school, and even plays music. Yes, he has limited communicative abilities and sometimes deals with self harming and aggressive behavior. But his life still has meaning, and he is still loved. There are thousands of people who are moderate to profoundly autistic, and there lives are not worthless. With supports and accommodations they can thrive.

Nicole, you have it exactly right and have, in my opinion, struck at the root of the problem. The outcome in Alex’s case and the justifications I am reading about, including the one from t above, are what you would expect from people who see autistic children as damaged goods, not as children with a disability.

This story keeps reminding me of that obnoxious troll Greg. I feel he would have approved of the outcome.

@Elburto

I am no expert on autism and don’t claim any knowledge on it. I am, however, an political science and aneconomist. The basic of economics is the allocation of resource.
Consider this: we have a limited number of said resource to use. How do we use them?
Lets say that using 100 a severely autistic children (I use autistic, substitute with what you want, it works same) could improve to moderate autism. Using the same amount, 10 moderate autistic child could pass to low (in the spectrum diagnosis). Using 5 a particularly talented child could learn advanced math/engineer/insert-it-here.
You have 1500, 5 severely autistic persons, 10 moderate autistic person, and 10 gifted persons.
How do you use your resources?

Lets add another layer to my cold and evil problem:
A severely autistic (or incredibly disabled, to explain, somebody that is and stay not verbal, and unable to perform even basic personal care) person requires 100 of cares and can give no output to society as a whole. A moderately autistic person require 50 and can, say, give 10. A normal person can give 20 and requires 5 (in the form of service). A particularly gifted person can give 100 and requires 7.
However, this is about adult, and in order for the normal (as in, normal distribution) person you have to give them 3 in education for their childhood years -each of it-, while the gifted person requires the aforementioned 5 per year, otherwise their outputs fall to 10 and 50 respectively.
How do you use your 2500 resource counting, say, 5 very low functioning autistic persons, 10 moderate, 50 normal and 10 gifted? How in 1, 5, 10 and 50 years, counting that the rate of disabilities stay more or less costant?

OF COURSE this is a simplicistic problem. But it enlights something true: in many US schools, parents of gifted children (as defined by US standard, not my terminology) laments that program for their kids are being cut due to funding going to severely or moderate disabilities.

It is cold. It is perhaps evil. But it doesn’t make it any less true. A similar problem happens in catastrophe-relief or in helping developing countries. You have little and you must do your best to it.
I have seen people in the situation where they had 1000$ and they had to choose whenever dig a well to give potable water to a village or using it to cure children that were dying. Cold and hard-hearted as it sounds, the best thing to do is digging a well. This maximise the results for the largest number of people. It is the same as the triage of hospitals in battle-situations, as explained by a surgeon, one of the hard ones used to operate while the bombs fall: “You can’t spend 6 hours operating somebody that is not likely to survive anyway, while other 3 people that could have more easily been saved are dying”.

Juggling the right of a single person to have the best quality of life possible with the demand of society to function is not easy. But denying the problem is not good neither. Trying to develope effective strategies for people who really needs them without taking away valuable opportunities for people who need those is one of the great problems of today. And most effective strategies may indeed include the realization that not all people improve, that some kind of disabilities are too profund and a form of palliative care given by experts may be the only choice possible.

As I said, this is aside the peculiar case here specified. I do not know enough of it to make any kind of idea. From what I can understand, what killed this young man was probably the belief of his mother and caregiver that a group home for people with severe disabilities was a bad thing, when I think it was possibly the best thing that could happen to him. This is murder, and it is wrong.

@LW
From all that I have heard, some people do indeed loses their diagnosys of autism or improve to less severe form of it.
Not all of them. I also know that there are people who come to an old age not-verbal and unable to take basic care of themselves. If this is not true and you can point the studies at me, I stand corrected 🙂

I seem to remember that 1/4 or 1/5 (25% or 20%) of children diagnosed at 2 lose their diagnosys at 7. I do not know other datas on it… Say, among people who are not-fuctioning at 10, how many are still unable to take basic care of themselves at 20? If you can tell me, I would greatly appreciate it 🙂

T, you’re making an assumption that somehow we do not have the resources to educate and care for these people. We do have the resources. We have more than enough money to fund services, we just like to pretend like we don’t.

And special education budgets are separate from gifted education budgets- you do not cut one to fund the other. Also, gifted children tend to do well with low cost interventions, such as clustering (putting all of the gifted children in the same grade in the same classroom) and whole grade level acceleration. They do not need more services, they need differentiated instruction.

@Nicole
I am making the assumption we don’t have enough resources for everythig, this based on the observation (which, I admit, is completely biased) that everybody is always clamoring that they don’t have enough resource to do what they wish… I am talking about state and governament, mind you. Not on individual level.

Even the kind of programs you propose for gifted children is costly, mind you. Even just in materials. Everything has a price-tag.

All budget came from the same revenues in this: more or less, taxes (not only. Lets say taxes). Defense Budget and, say, Science Grants are I suppose separate, but if you see -10 on Science Grants and +10 in Defense Budget, you can guess what had happened.

I don’t know a thing about how the US budget is partitioned, it may be that it indeed is enough for everything… In that case, my previous analogy is, for the US, invalid 🙂 And the US is very lucky indeed. I know that the Budget of my country is not enough for everything. For one, we would like to do a lot more of space and science, but we don’t have the money 🙁

t., your reason is very utilitarian in approach. That works for some questions, not so much for others. In Alex’s case, it doesn’t apply at all. Services were offered. They were refused.

The other thing that struck me about your reasoning is that (and I am not saying this is what you are advocating) it is a very short step from what you describe to justifying eugenics. If the resources aren’t there, then cull the ones we can’t support until we have the resources available. That extension of the logic scares me.

@Todd

Yes, indeed. I was musing in general over the problem. In Alex case, it wasn’t so (I didn’t read very well in the beginning, I apologize). They were offered correct services and refused them for crack reasons. It almost look like those cults who clamored for suicide…

I should have put an OT in front of the post, pity I can modify them now!

Saying that utiliatarism -> eugenics is a textbook slippery slope case. It doesn’t, not more than saying that making gay marriage legal would means people will end up marrying their dogs or saying that theory of Evolution leads to Nazism (eyerolls I spent too much time debating creationism). Organ donation in my country is utilitarian: the organs don’t go to the sickest people, but to the people who are most likely not to reject them and to live long after. If there would be enough organs, there wouldn’t be a problem. But there aren’t. This doesn’t mean that we shoot people who need a kidney or a heart, or that we don’t help or cure them. Help and care are given, but the organs may go to somebody else, if that other person has the best chance of living.

Thanks for posting this description of events surrounding AoA and Alex’s death. I had also been following the AoA narrative for months and their stories seemed horrible and yet set off alarm bells as to their accuracy. Like you, I always felt like I was missing a piece of the story. Then, when the news came of Alex’s murder I was utterly shocked. Although we still don’t know exactly what happened, the way you put together the timeline clears a lot of things up.

t:

Saying that utiliatarism -> eugenics is a textbook slippery slope case.

One of the rationales behind Aktion T4 was that disabled people cost money. Money that could be better spent on worthier things. It’s a valid criticism.
Leaving that aside, you say you’re an economist. As others have pointed out, autistics can lead fulfilling lives. I’m a software test analyst. I’ve been at my current client for more than 3 years working on different projects. Economically, it makes sense to get autistics as independent as possible.

The person who hasn’t been heard from so far is the father, although it is documented that he was involved enough to have called for a well-being check and/or forced entry into the apartment. It seems almost inevitable that custody would have been at issue in the looming divorce case.

I’m very curious as to why exactly Alex as in the hospital in the first place….as Orac said as well. If Alex was so “afraid” of going to the doctor, perhaps he had very good reason…was he going to legitimate medical professionals or was this going to a DAN that was administering Chelation, MMS & other therapies?

T, lest I descend to profanity, let me point out that I was in both the gifted and special education programs as a child. My position on the autistic spectrum didn’t affect my intelligence, just hindered my ability to work well with others and occasionally my ability to communicate. Which got worse when I was under stress, as many things that are difficult do.

And, frankly, if I was told ‘we can give you the special classes and services, or we can show a nonverbal autistic person how to use a picture board and later a computer to communicate without speech’, I’d pick the other kid. Because nonverbal is not stupid and is especially not useless.

I loathe the view of idea of autistic people being viewed as useless, as changeling replacements for ‘real children’. I saw this story first on a number of groups for autistic folks, who, frankly, are spitting nails at the autism biomed movement basically saying ‘no, it’s better that Alex is dead and in heaven than living with autism’.

The most expensive services usually aren’t the best. The services that usually end up being the best are the ones provided in the least restrictive environments that focus on skill building. Supportive employment, therapeutic foster care, inclusive education, community integrated living, sheltered workshops, wraparound services, etc, etc. Plus, all of these are effectively job programs.

And disabled people do not disappear because you don’t provide services. Their families end up providing substandard care (and having one or more members unable to work), and the people end up in hospitals, prisons, and homeless shelters.

t – Your argument disgusts me. Your argument is eerily reminiscent of one used in the 1930s to justify genocide. It’s similar to one used by governments now, to deny resources and care to people with disabilities and chronic conditions.

If only you had known who, or what, you were addressing. Not that you’d care, I’m just another waste of resources that could be better spent on someone who deserves to live well.

Also, you do realise that gifted children and non-neurotypical children are not monolithic, mutually exclusive groups, don’t you? That’s the problem with seeing everything in terms of money, it’s black and white, no shades of grey.

No doubt the many parents of severely disabled children who post here will educate you further on the flaws in your eugenicist argument.

One last, tiny thing – I promise I will hunt down, and spit in the face of, anyone else who compares gay marriage to other situations. You know what the fight for gay and trans civil rights is like? Nothing else. Stop using it as a shield to defend your sh¡tty opinions.

I am, however, an political science and aneconomist.

I’m not being snarky, t, but having studied economics and one point in my life I know where you are coming from.

That doesn’t mean that I agree with you, but your viewpoint is not bizarre or cruel, from a purely economic standpoint. Were I twenty years younger I might even share your opinion.

However; the closer I get (at age 58) to becoming a consumer rather than a producer of economic goods, the less I see things that way.

I promise I will hunt down, and spit in the face of, anyone else who compares gay marriage to other situations

Give it a week or so, elburto, I’m still fiddling with the sloth launcher prototype.

I’ll also go ahead and note that I’m also involved with one of the Chicago area cat-rescue groups. Had the cat been left to its own devices and placed in the hands of the CPD, yes, it lokely would have wound up at CACC. However, there are other options, as difficult as they can sometimes be to access. They were only a couple miles from Brookfield, which has a private shelter I’ve dealt with before. It could have been arranged.

I found it telling that they killed the cat, rather than letting it go to a shelter.
-Nicole

Exactly. Why kill the cat? It’s not as if the cat had some terrible disease and would be better off dead (not saying I believe that the boy was, just that some people do). They specifically killed the cat so that no one else could have him. I think it was the exact same reasoning for the child: better to have a dead kid then view yourself as a failed mother. They couldn’t cure him, so they killed him.

I don’t see them getting off without any prison time, however. Even though there are plenty of sympathizers, Americans have a fairly brutal reaction to any mother that hurts her child, even accidentally. Violently murders her kid? Even more so. There’s a reason these women don’t fare well in prison.

Sadly, if you want to kill someone and not do a lot of time for it, kill your child. To me this mom should be put away for life, but I’ll bet she gets off light, like this “mom” where I live did for killing her autistic 5 year-old son in an equally brutal way (http://azstarnet.com/news/local/crime/mother-gets-years-in-death-of-boy/article_49602fd2-d91d-570d-a9be-b9cb5e5477d5.html). For some stupid, sick reason, juries seem to feel badly for these parents, as though that is some excuse for them to kill their child.

@Shay – I’ve got another new chair now! I think I’ll have meth-addled chihuahuas on that one.

We’ve also got a new wheelchair accessible van-car-hybrid thingy* so that when I’m able to get out I’ve just got to whiz up the ramp and into my position as mistress of all I survey.

If you can think of any kick-arse mods for the car then let me know!

*a Renault Kangoo, silver. googling Kangoo+WAV (wheelchair accessible vehicle) will yield pics and mod-specs, haha.

[email protected] – as I said above, juries almost never convict a parent/carer of killing a disabled charge.

A site I used to frequent posted monthly lists of the murdered, and of the charges laid (if any) and punishment received (statistically? nothing)

The site owner abandoned the site after receiving death and r*pe threats for daring to criticise able people, and for insisting that advocacy groups be made up of those they were representing, and not gobby parents.

elburto: well, one factor may help ensure they get jail time. They also killed the cat. Not release the cat, not give the cat to a neighbor, not give the cat to the husband, not put an ad in the paper…. To me, it smacks of “if I can’t have him, no one can.” I hope we learn more in the trial, but I have a strong hunch they didn’t really kill him because they felt he was better off dead, but because the mom was going to lose custody of him. Remember, this happened a week after divorce papers were filed, which would’ve initiated custody hearings, and there have been suggestions that the government was in the process of getting the child into long-term care. Was the mom overwhelmed? Clearly. But people have gotten violent when animal control came to take away their abused pets; you think, if someone gets that possessive of an animal they beat or can’t be bothered to feed or groom, how much more possessive can they get over a child?

The child’s autism is a factor, but it could as easily be cancer or any other chronic and disabling condition. That it’s autism, specifically, doesn’t matter. It’s obvious she disagreed with the hospital staff on the correct treatment of her child; if she’s the possessive type, that would’ve felt like an infringement of her parental authority, and boy do we see that particular theme a lot from the antivax communities. AoA didn’t make her like this, but they poured gasoline on the fire, feeding into her possessiveness and narcissism. If I’m getting the timeline right, not long before the tragic end, much more serious threats to her parental authority came up: the potential loss of custody altogether. Now, most parents have healthy mindsets and, although they’ll be very sad to not have their child with them all the time, they’ll recognize their own limits. But like a crazy cat lady with fifty matted and starving fleabags breeding all over her house, this woman couldn’t see her limits, or refused to, and when others prepared to take matters into their own hands, she did what so many other possessive parents have tragically done when they are about to lose custody: she killed him.

Consider the tragic story of Susan Powell, who was murdered by her husband, who didn’t get to stand trial for it since he killed himself right after killing his sons, who had already been removed from his custody but were back for a supervised visit.

And then there was the case rather close to where I live, but over the border in Wisconsin; a man had had a tempestuous relationship with his wife, but after divorcing appeared to finally be getting the anger management counseling he needed. This was enough to trick the babysitter into letting him be alone with the kids, who then had all their throats slit. He called his wife up to brag about what he’d done; she didn’t believe him, since he’d trolled her with lies like that before, but before long she found out that this time wasn’t a lie. He was intending to kill himself afterwards, but lost his nerve, so instead he’ll be living out his days in jail.

And then there are all the kidnappings. Stranger abductions are very rare — but family abductions are not so rare, and it’s very often a non-custodial parent who takes the kids. Sometimes the kids survive. Sometimes they don’t. Sometimes it ends in an armed standoff, as the abducting parent refuses to let the kids go without a fight. Sometimes they flee the country, especially if one parent is an immigrant able to return to their homeland, which can be particularly difficult if the home country refuses to honor the findings of a US family court. This sort of thing happens so frequently that there is now an international treaty that nations can sign onto to sort out these cases, as normal family law doesn’t cover international abduction. And sometimes nobody knows how it ends, because they’re never found again.

I very much hope the jury isn’t swayed by stories of the mother and godmother’s plight. They had plenty of resources to tap, but they fought with every one. “We were overwhelmed” cannot be an excuse for this clearly premeditated murder. Nor can insanity. They knew what they were doing, and since they talked so much about seeking what they believed to be proper medical care for the boy, they certainly believed there was hope for his case. They just didn’t want to lose control of it. I hope very much that medical evidence is submitted in court; I’m sure that an autopsy will be conducted if it hasn’t already, since we have first degree murder charges here. It’s horrible, and they have got to pay.

Remember, this happened a week after divorce papers were filed

The papers were filed in February (by Dorothy). The first court appearance, however, was scheduled for June 20. I’m not getting the impression that it was a tactical move for the sake of better access to state services, although it may have been at the time.

(And, of course, there’s the question who initiated the DCFS investigation that was ultimately deemed unfounded.)

Sad story – and we certainly are not getting the medical professionals’ side of it.

I am uneasy about speculation that quack autism “biomed” treatments may have played a role in this teenager’s illness or in demands by his caregivers. While that could be the case, I think we should leave speculations of this sort to the likes of Mike Adams (who in preying on celebrity deaths, enjoys sharing his convictions that prescription drugs or mainstream medical care were responsible for bad outcomes).

Just so you know the mindset, here is a commenter at LJ Goes Facebook page

Many kids may have been murdered by their own parents as someone stated earlier, but I think this story is different/unique in that 1,000 of people around the world rallied around Alex and his mother, signing petitions, making calls, searching for help, begging for someone to listen. Loyola hospital’s switchboard went crazy. They knew shit would hit the fan if they treated Alex’s medical problems because that would be admitting cause. They also knew they couldn’t silence us, and still haven’t. They treated him like an animal. No one that could help, would. Imagine being Dorothy. The media now has the chance to do the right thing, to really investigate this story and expose the healthcare system in this country for what it really is: a total scam based in greed and lies causing death to millions of people every year. Dorothy should not have killed her son, no doubt about that, but in her mind that was better than the alternative. She has taken responsibility for it. She probably feels a sense of relief right now.

Narad @19 is right: we haven’t heard from Alex’s father, and we should hear his side of the story. I’d noticed in the post that Mr. Spourdalakis was apparently not living with his wife and son. I’ll grant that having a child on the autism spectrum can be a significant source of marital stress (it was a contributing factor in the divorce of one of my relatives). We can only speculate on this point, but perhaps Alex’s autism was a contributing factor. The court docket Narad linked to shows that Mrs. Spourdalakis was the one who filed for divorce, and Orac noted that the state DFCS was allegedly involved (or about to become involved) in the case. Did Mr. Spourdalakis want proper care for Alex, only to be overruled by his wife?

That line about 19 days in the ER also sounds like pure bovine guano to me. The ER is the most expensive place in the hospital to provide medical care, so any patient who would require overnight care would be admitted, allowing the hospital to provide more cost-effective treatment.

[email protected]

In my opinion, the problem isn’t how will we decide which autistics we will help with existing resources but where will we find sufficient resources to help all autistics.

Eliminating the existing tax exemptions for organized religion might be a good place to start.

The cat is better off dead than living without me.
The child is broken so it must die.
I can’t cope so obviously I am saving my children from this horrible world if I take them with me into death.

I don’t understand the mindset, but it does seem to crop up every so often. I think it’s probably a severe mental illness.

@nastylittlehorse

I think it’s probably a severe mental illness.

Well, yes. It is.

I’m not a parent, but I am a cat-owner and I’ve endured depression for the majority of my life.

Last year, I hit bottom and decided it was time to kill myself. I also decided that I should kill my cats, too, because my poisoned brainmeat* convinced me that I had mooched off society long enough and that to “foist” the cats off on anyone – even a shelter – would have been further mooching and of COURSE I couldn’t try to re-home the cats myself, in case my friends figured out why I was doing that in the first place. At the time, it all made total sense.

Yep, it’s an illness.

Fortunately, circumstances pulled me back from the brink and the trend’s been improving ever since. And my guilty conscience means that my two little** fuzzbutts have been spoiled rotten ever since.

So, I can almost understand how someone in the screwed-up headspace that has them thinking murder/suicide is a good idea can justify killing their pets, too and, by extension, a child. Doesn’t mean I approve of it, though. shudder

*my affectionate nickname for the chemical imbalance responsible for that lovely state of mind

** LITTLE? Combined weight: 36lbs

I notice that Goes ( the Rev @ TMR) was the most publicly involved : stories about Alex @ AoA first appeared in early March but then, in early May, she produced a Meisterwerk of oddity ( posted at both sites) about her “Two Dreams” in which she narrates a bizarre tale ( dreams) in which a doctor admits vaccine malfeasance (?) after tussling with her in an airport and another in which her children are grown up and the boy with autism is now perfectly non-autistic and a “lady killer”.

The Grand Finale is a farewell to her work as a blogger- her son apparently destroyed her computer and she took it as a not-so-subtle sign: she’ll come back when she is “worthy” of her audience or suchlike. She returned recently. I guess she’s worthy.

I wish these idiots would take their amateur social work elsewhere to a place which didn’t involve the welfare of living children or pets.

@ Orac:

I agree, Andy looks creepier and creepier. He and I are about the same age- I look so much totally better-
but then I never ordered unnecessary invasive medical tests for disabled children, committed research fraud or repeatedly sued reporters vexatiously- stuff like that shows in your face.

@Liz Ditz – That post just floors me. What kind of help do they think they provided? They signed worthless online petitions? They jammed the hospital switchboard? The demanded answers?

And the reason Alex didn’t get better? The medical-industrial complex conspiracy! Which must surely crack now that it’s been exposed! Carl Kolchak will do the hard hitting investigation and will bring the whole thing to light! Assuming, of course, that the conspiracy doesn’t murder him, silence him in some other way, or make the evidence disappear with the dawn.

@ t: How dare you come here to spread your nonsense. You don’t know diddly about economics and are using your bogus “credentials” to espouse a subtle form of eugenics. You are describing my son who would never be a “productive member of society”.

My son was born with a rare genetic disorder which caused profound and multiple physical, intellectual and REAL medical problems, along with autistic-like behaviors…not autism. He struggled to survive and succumbed to a natural death, peacefully in his sleep nine years ago at age 28. He was a brave and a happy child and the joy of my life and I miss him terribly.

Alex’s mother never appreciated her child, except for the 15 weeks of fame (notoriety), she received when Lisa Goes a “journalist” for that slimy anti-vaccine organization Age of Autism, plucked the mother out of obscurity by “serializing” the story of Alex and his mother Dorothy on AoA’s blog.

Mother Dorothy allowed pictures of Alex to be published on the AoA blog, showing him buck naked with a diaper partially covering his genitals. Dorothy and the co-murderer reveled in the tawdry publicity and were visited by disgraced and discredited former doctor Andrew Wakefield, which was videotaped by Wakefield’s “Autism Media Channel”.

Dorothy and the cranks at AoA claimed Alex was the victim of medical neglect…a baldfaced lie, claimed he was in four-point restraints, 24/7…another baldfaced lie.

Dorothy and the godmother/caretaker are murderers who snuffed out Alex’s life and I only hope that they receive the maximum jail sentence for the egregious harm they inflicted on Alex during the 14 years of his life…and for the brutal manner in which they eliminated him.

Just a clarification, when a child or an adult is placed in residential care, you don’t lose legal guardianship of that child/adult. You must however, petition Family Court for legal guardianship of that very impaired child at age 18. There is a huge amount of documentation required, in order for a judge to award guardianship that includes reports from a physician and a psychologist, to “prove” that an 18 year old lacks the intellectual capacity to make decisions about his/her care.

Mental illness is not an excuse for, or defence of, murder. It’s more ableism to armchair diagnose someone who’s done a horrible thing and write it off as “mental illness”.

Mental illness does not cause murder. Most killers are found to be mentally healthy, and people with mental illnesses are more likely to be victims of violence than perpetrators.

Anyone here with depression? Anxiety disorders? Mentally ill. Anyone here who’s killed or maimed someone? In the single digits I bet.

Please please PLEASE stop throwing around “crazy” or “mental”, and further stigmatising people with mental illness, because BAD and MAD are not the same thing, Bats and cats are mammals, they’re furry, their names rhyme, but you wouldn’t blame bats for scratching your sofa, or cats for nesting in your eaves.

Mental illness does not explain why Alex’s non-parental caregiver helped to kill him, even if his mother was mentally ill.

Being suicidal and planning to end the lives of your pets is nothing like cruelly exploiting your child over a period of months and then planning to murder him.

@Calli – I’m aware of the divorce proceedings, it’s barely relevant. People murder their disabled children all the time nobody seems to understand this. It happens constantly, it’s barely newsworthy in some places, and is rarely punished.

I mentioned the cat above too, saying that they’d almost certainly receive more punishment for cat cruelty than for murdering a child.

As I’ve mentioned before, to anyone who still doesn’t quite grasp the scale of abuse against people with disabilities, it is endemic. People have tried to log cases and failed because there are too many. The harm committed against vulnerable people is all pervasive in society. I shall return with links to individual, but all too common cases.

@lilady – I was hoping you’d read our amateur eugenicist the riot act.

@ Johanna:

I’m so glad you’re doing better.
Always remember that thinking and acting are not the same thing- despite what the Christians may say- thoughts might lead to actions but don’t have to. Lots of strangeness may transpire in thought-
what you described can be best imagined as an “early warning system” that should alert you that OTHER actions- involving other people- are required. Thoughts aren’t irrevocable, actions can be.

Take care of yourself and those cats: you have much to
contribute- what you said here right now may help others who are in a similar position to that which you were.

This was two people, which I think is important when discussing any mental illness aspect. Also, they planned it, it wasn’t an impulsive act.

Certainly we do need mental health supports for parents and caregivers. We also need leaches like AOA to go away and not feed into any delusional and paranoid thinking.

Denice Walter wrote:

I look so much totally better

Pictures or it didn’t happen!

Murderer Dorothy Spourdalakis wrote:

Thank God for the internet and facebook!

One disadvantage of apostasy is that I can no longer read comments like that with equanimity. The Internet and Facebook were invented, within living memory, by identifiable people – direct any gratitude to them!

T, how can you be sure that the ratio is 1500 severely disabled autistics to 10 gifted autistics?

Basic experimental epidemiology would be that the ratio of autistics in the 1960’s would be the current rate of 1 in 88 severely disabled autistics using criteria from 1960 and it’s not the case.

As far as development goes, I also would be diagnosed as Kanner autistic back in my childhood and yet, I am successfully bilingual (native langage: French) and went to university in both language. Remember, autism is not developmental stasis and while it may look like one development is stopping, it’s not, autistic learn differently from the norm and it is using their innate capability to learn that they can develop faster than expected.

Alain

Articles tagged ‘murder’ on FWD/Forward:

disabledfeminists.com/tag/murder/

Please read just one article in the ‘Record of the Dead’ category if you think I’m exaggerating about anything.

Onward, discussion of the r+pe of disabled people, including a horrific comment by user ‘whatjustice’. If any of you read one thing I’ve posted today , then scroll down and read her comment on this post:

tigerbeatdown.com/2012/10/08/rape-and-selective-outrage-in-the-feminist-community/

Read how the husband who broke her skull praised and pitied for having to put up with her. He’s lionised and sympathised with by her domestic violence support workers in her presence.

People with physical/mental/developmental disabilities are abused and killed every single day, while their tormentors are excused and pitied. It happened to me too over many years, when I was far more able than I am now.

Alex’s death is only exceptional because it was noticed, that it happened at all was not out of the ordinary.

If you want to stand with autistics, there will be a vigil honoring Alex starting at June 16 at 7:00am until June 17 at 10:00pm in EDT (links to facebook).

This Vigil has been started by Autistics who are tired of the murders of people with disabilities. We are tired of the excuses, the failure to condemn the murders of our people. This vigil starts in the heart of our community, because we are the target population for violence and murder. This Autistic-led vigil will combat responses that focus away from the murdered Autisic/disabled person and condone our murders by emphasizing “how hard it must have been” for the murderer. This sort of response must be seen for what it is: a continuance of the dangerous societal meme that we are burdens not worthy of life.

Andreas:

I think we can agree that Andy logs in at the 90th percentile of creepiness- by chance alone it is likely that I look so much totally better

@Andreas – the same is true for me. I’m pretty sure that the internet is not divine in origin! Thank engineers, techies, men and women.

I am fairly sure, however, that facebook arose out of Hades. Colour me enraged that so many sites now require it, or twitter, to participate.

coughSBMcough

“I freely admit that one of the main reasons I choose not to have children is that I would never, never, never been able to take care of a severely disabled child.”

OK, so this set of postings has gone off in a strange and disturbing direction, but I do I think this comment is worth visiting. I know of people who decide to have children, and then talk about the ‘perfect’ little child they’re going to have – and all I can think is, what if the child isn’t ‘perfect,’ by your own definition? What if they’re not neurotypical, what if they’re physically disabled, what if they’re just in some way, shape, or form, not what you expect?

IMO, and I really mean IMO, it’s irresponsible to have a child without being prepared to accept and love the child as the child is, which might be something very different from what you envision.

That’s one of the many reasons I made the personal decision not to have children. But I just wonder how much this myth of ‘my child will be ‘perfect” plays into this fucked-up sort of outcome.

i agree with t’s comment.

i understand the opinion isn’t popular with people who have severely autistic/disabled children – but the only responses those people have provided to t’s logical post, are purely emotion-based.

lilady – i’m very sorry for your loss, but even you can’t provide any way that society benefited from pouring resources into keeping your severely disabled child alive for 28 years – only that you loved him and were happy to have him in your life for that time.

the money put into those services doesn’t magically appear – it comes from tax-paying citizens and their businesses, and it is a finite resource. the money spent on severely disabled people – who, without sugar-coating, are of absolutely no benefit to society as a whole – would be better spent improving education, healthcare, infrastructure, etc… for those who are able to put back into the system.

You know, I looked at Wakefield’s house where he is living in Texas. I see the suits he wears. Then I hear of how he may have wined and dined politicians. And I can’t help but wonder if he himself could have done anything to stop this from happening. Could he have given them money from the “Wakefield Justice Fund”? Could he have moved some strings among the people he knows to get the child into a place where he would be better?

I mean, that video was all he could do? Really?

Of course, he may have done more, but I’m 99% sure he didn’t. If he did, it surely would have been broadcast to the world to show us peasants how he’s Jesus and Nelson Mandela (or was it Ghandi?) all rolled into one.

As for the murder of the child, we must remember that many people who fall for the autism-vaccine connection also think of their children as their property, or as children who are “dead” to the world, or both. On the one hand, the government cannot tell them to vaccinate. On the other, the government must help them deal. It’s all convoluted and contradictory, and it makes no sense. This was senseless and wrong on so many levels.

It’s amazing how so may people can be preaching to the same choir and singing in it, too. Where is the dissent? There should be some in real science.

the money spent on severely disabled people – who, without sugar-coating, are of absolutely no benefit to society as a whole

What the f**k gives you the right to make a judgement like that? You (or any other able-bodied/neurotypical person reading this post) could be just one car accident away from becoming severely physically or mentally disabled yourself. How would you feel then about being written off as a drain on society and left to suffer and die unaided?

@Edith – I agree. It is an eugenics argument, plain and simple. If you’re not a value to society, then you should be left out in the cold to die (or put down, if you really want to get technical about it).

Stephen Hawkins has been a huge contributor to our understanding of the Universe, but, given his condition I wonder if “Have to Agree” would have just taken him out back and had him shot?

@Calli – I’m aware of the divorce proceedings, it’s barely relevant. People murder their disabled children all the time nobody seems to understand this. It happens constantly, it’s barely newsworthy in some places, and is rarely punished.

I mention it because it may have factored into her decision process, if it meant that her custody of Alex would be challenged. While it’s difficult to tell at present, like Orac I strongly suspect some medical abuse was going on here — subjecting the child to worthless treatments while refusing effective ones. Remember, of course, that not all abuse of the disabled is because people think they need to be removed or anything equally abhorrent, but because of the caregiver’s pride blinding them to the reality of the patient’s situation. That’s why I brought up cat hoarders; they don’t hate their cats (quite the contrary) but they nevertheless subject them to quite horrific abuse by neglect and ghastly living conditions. Medical abuse can be a particularly insidious form of abuse, and there is a strong element of needing to be in control over the patient. If the divorce proceedings threatened to challenge her sole control over Alex, perhaps she felt she was out of time. “I know how to care for him, you don’t, so I’m going to put him somewhere beyond your reach and then follow him there!” A dreadful line of reasoning, but it’s happened before. And she’ll try and get off by using the pity party for the caregiver of an autistic child, which is disgusting, because it’s just one more example of it being about her and not her son.

Being disabled may make it easier for them to start mistreating them, to stop respecting their individuality. But the disabled are certainly not the only ones who suffer like that. A family recently allowed a child to die of pneumonia becuase it was against their religion to seek medical assistance. As they were on probation following the death of another child the same way, they’ve now lost custody of their other children and are in jail. Time will tell if the second murder gets anything like a reasonable penalty; the first one certainly didn’t. I hope that the brutality of this particular case gets it treated like the premeditated homicide that it is, and that the prosecutor doesn’t accept a plea bargain for lesser charges.

Taking bets on “Have to Agree” being T’s sockpuppet.

I’ll bet the house on Yes, I got a distinct whiff of dirty socks from that comment.

Have to agree – Take a flying fvck at a rolling doughnut.

Not that I should have to justify my life, or the life of any other disabled or otherwise vulnerable person, but we keep people in work, don’t we?
Also, I’m pretty sure that PWD and their families also pay taxes. I know lilady will have paid enough in her life.

I don’t feel happy about taxpayer money funding religious institutions and unjust wars, thingi with actual potential for societal harm and corruption. I don’t recall hordes of cripples targeting children for molestation, or invading countries in order to blast the citizens to pieces. Somehow it’s easier to blame us for the ills of the world though, isn’t it?

Now f*ck off back to whatever sordid little grief hole you climbed out of. Yes yes I’m only one of those worthless, better-off-dead people, but at lease I don’t exist purely to illustrate the meaning of the word ‘arsehole’, and to prove that Aktion T4 would be lauded by many people, if only from their anonymous hiding places online.

Nope. Unless he’s using a proxy I don’t think it’s a sockpuppet. I will, however, monitor. They always give themselves away sooner or later.

Calli – disabled people are easy targets because we’re dehumanised. I’ve been saying it in this thread, in another this week, and for years here that the likes of AOA dehumanise PWD and non-NT people with adjectives like “broken” or “damaged”.

They insist that parents have been robbed of their “real” children, that the real children can be brought back by hurting the child in front of them. Those children are rendered as objects, as things, who are broken beyond repair. Better off dead than autistic. Other children are better off dead of VPDs than “vaccine damaged”.

The Nazis dehumanised disabled children and adults, and it led to Aktion T4. They used the same language as AOA and t and it’s sock up there to accomplish genocide. Oddly enough very few people are aware of Aktion T4, even self-professed ‘history experts’. Why is that, do you think?

As for “they think they’re doing the right thing” argument, I don’t care. If I hit you with a car the outcome is the same, accident or not. Alex is dead, good intent or not. Intent is not a magic word, except to those wishing to excuse their actions.

I am tired of ableist arguments, of being described as a drain on society, and of neurotypical and able-bodied people justifying the unjustifiable. I have suffered so much more prejudice because of my disabilities than because of my sexuality, and I’m one of the lucky ones. I live in a country where thousands have died after having their funds cut off due to their status of ‘unworthy’. That has been accomplished by dehumanising them, us, and then making excuses for it.

@Liz – some Muppet drove into Other Mrs elburto and wrote off our lovely little car. Thanks to some internet cleverness I got a reconditioned WAV and an ex-display electric wheelchair for £3100 in total, hurray!

Birgit Calhoun is a real person who’s been posting about Alex and his mother for months.

http://www.ageofautism.com/2013/06/mother-godmother-charged-with-first-degree-murder.html

Birgit and her pal Nora from AoA, have posted their fact-free, citationless comments and have a running dialogue on the Slate blogs as well…sorta like sh!t on a goose.

http://www.ageofautism.com/2013/06/dachel-news-update-slatecom-accuses-rfk-jr-of-being.html

Wanna go a few rounds with me Birgit?

Stephen Hawkins has been a huge contributor to our understanding of the Universe, but, given his condition I wonder if “Have to Agree” would have just taken him out back and had him shot?

Not to mention FDR, who led us out of the Great Depression and through World War II, during which we fought against a government that had exactly that policy. Or the far too many soldiers who go off to war and come back maimed (once we commit to fighting a war, we commit to taking care of such people as part of the cost of that war, and it continues for decades after the shooting stops).

“T” and “Have to agree” have derailed this thread–but they need to understand that there is a reason the sort of policies they advocate are considered evil, and not just by people of a religious bent.

the money spent on severely disabled people – who, without sugar-coating, are of absolutely no benefit to society as a whole – would be better spent improving education, healthcare, infrastructure, etc…who are able to put back into the system

You seem to be presuming that people represent fungible economic assets rather than living breathing human beings, and that their ability to economically contribute to society is the only measure of their worth. Why?

the money spent on severely disabled people – who, without sugar-coating, are of absolutely no benefit to society as a whole – would be better spent improving education, healthcare, infrastructure, etc…who are able to put back into the system

You seem to be presuming that people represent fungible economic assets rather than living breathing human beings, and that their ability to economically contribute to society is the only measure of their worth. Why?

i understand the opinion isn’t popular with people who have severely autistic/disabled children – but the only responses those people have provided to t’s logical post, are purely emotion-based.

Do you see emotions or data in my post? I don’t, I wrote it without any emotions and striving to as many fact as can be.

Alain

Edith Prickly – I, for one, have a detailed Advance Decision Directive that will hopefully ensure that I am indeed “left to die” if “one car accident” should convert me from a publishing researcher, family breadwinner, and loving friend into a nonverbal, bedridden vegetable and crushing burden to my family. And I have a spouse who has sworn that if my wishes were not respected, he’d put a bullet in what’s left of my brain. Some people can be severely physically disabled and still engage in meaningful intellectual activity. Some people can be quite mentally disabled and still enjoy human relationships and do useful manual work. Someone who is able to do nothing but lie in a bed all day, getting flipped like a pancake every few hours, simply is NOT contributing to society and IS a drain on resources. I don’t object to such uses of resources so long as the person being so maintained is happy and not suffering. However, I question how often it is possible for a human being – normally an active social animal – to be consistently happy in a state where he enjoys little if any autonomy, voluntary activity, or ability to relate to other people. Perhaps those born with tragic handicaps don’t know what they’re missing, but how is it that a person who has had those things would be eager to go on living if they were taken away?

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