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Katie, you should be twelve

1 Mar

Katie McCarron, you were beautiful and wonderful and loved by your father and grandparents and I’m sure so many more. Here’s what your grandfather had to say shortly after your passing:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that Katie was not in pain. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of karaoke. She liked to dance, she loved to do the hooky poky. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

I am writing about you today because it is a day of mourning in our community. A day when we remember those we failed to defend. For each of us there may be one out of the many murdered who touches us most deeply. I write about you today because it is a day of mourning. I think about you often.

If I recall correctly you should be turning thirteen later this year. I wonder how that wonderful smile would have matured. I know that there were people in your life who would be cherishing you and loving you. You deserved that.


By Matt Carey

Yes, the video “who killed Alex Spourdalakis” video whitewashes a murder

17 Feb

Consider this review of Who Killed Alex Spourdalakis on Examiner.com. The review is bad. Really bad. But it shows that at least some of the people watching this video are coming away with the idea that the primary fault for the murder does not lie with those who committed the act. In fact, even the murder itself is downplayed.

Don’t believe me? Check out this paragraph:

Alex Spourdalakis had two extremely devoted caregivers who would literally do anything to relieve the problems that he dealt with. He was a normal, happy baby until 18 months. Dorothy, Alex’s mother, and Yolanda Agata Skrodzka, Alex’s godmother, doted on him every moment when he started to show problems, often never leaving his bedside when he wound up in various hospitals. The story that movie tells is a heartbreaking tragedy of an arrogant and misguided healthcare system, not able to accept the changing state of autism in America. Dorothy and Yolanda trusted the doctors as Alex went through numerous changes, assuming the doctors knew best. Over time, it became clear that the doctors mostly didn’t know what they were doing. Eventually, at age 14, Alex died.

Eventually he died? That’s how you describe a death that involved poisoning, having one’s wrist slit and multiple stab wounds to the chest? “Eventually died”? Alex’s life is put in the context of his mother and godmother. He has a supporting role in his own life’s story.

Consider another paragraph:

It becomes obvious looking at the film that there is no coherent method of dealing with this growing problem, and it is the families who are being punished to unimaginable degrees. Hospitals don’t want to deal with this problem, which has led to an epidemic of stress-induced homicides. In Alex’s case, after he was at his very worst he was discharged by Lutheran Hospital in Parkridge, Illinois after a long line of hospitals had passed him along. It was shortly after that, that Dorothy and Yolanda were arrested for the death of Alex. The film shows very clearly that the two women were saints who obviously eventually succumbed to despair. This story is also shown to be a common problem.

So much wrong in that paragraph. So much. But let’s consider the worst: “The film shows very clearly that the two women were saints who obviously eventually succumbed to despair.”

Seriously? They stabbed him. Murdered him. But they are “saints”?!?

One could go sentence by sentence and point out the many flaws in this review, but I think the point is clear: Alex’s death is important in so far as it condemns the medical establishment. His life is important in so far as it shows that his caregivers, and murderers, are “saints”.

Alex deserved better in life. He deserves better now than to have his story told in this way.

By Matt Carey

Movie review: Who Killed Alex Spourdalakis

12 Feb

Alex Spourdalakis was an autistic youth. An autistic youth who faced the sort of crisis we all hope never happens. And that is even before he was killed by his mother and godmother. Much of the last year of his life was spent in a search for a way to treat his sleep disturbance and aggression, with his mother concluding at one point that these stemmed from gastrointestinal disease (she would later decide that lyme disease was at play), a conclusion which apparently put her and her advocates at odds with some of Alex’s doctors some of whom proposed a psychiatric approach. His hospital stays included four point restraints for days and weeks. As a recent study has shown, restraints are not unheard of for autistic patients. This is a topic that deserves attention to limit or end the practice. It is impossible to do justice here to just how serious this crisis was. And that’s leaving out the fact that in the end he faced murder by those closest to him.

He was murdered by his mother and godmother who poisoned him with an overdose of prescription medication and, when that failed, killed him using a kitchen knife to slit his wrist and inflict multiple stab wounds.

We now have a video showing some of the story. A one-sided view of the story. A video by Andrew Wakefield. Mr. Wakefield has a long history with the autism communities and, quite frankly, that history is marked by many less than accurate accounts of fact by Mr. Wakefield. I’ve watched his “Who Killed Alex Spourdalakis” a few times now and tried to put my thoughts into words.

“Who Killed Alex Spourdalakis” is not a true documentary in that the film makers were a part of the story. It appears to have started out as part of their “Autism Team” reality TV show project. Mr. Wakefield’s “Autism Team” was not just standing back and documenting events, they were acting as advocates and advisers to Alex’s mother. For example, they put Alex’s mother in contact with Arthur Krigsman (pediatric gastroenterologist and former colleague of Andrew Wakefield) and arranged transporation for Alex to be seen by Dr. Krigsman. Roughly a week before his death, Alex was in the hospital again, where he was visited by the “Autism Team” in the person of Polly Tommy and it sounds like Andrew Wakefield. Alex’s mother discusses how they’ve been offered a placement in a psychiatric facility, but this would involve Alex being separated from his mother and godmother. A separation we now know was necessary to save his life. In this screenshot we see subtitles for Alex’s mother stating “not in a psych unit. Once a week” (referring to the chances to visit Alex). The godmother is stating, “it’s a psychiatric facility”. And the closed captioned words belong to Polly Tommy who is stating, “No, we can’t do that”. We? The Autism Team are documenting themselves as part of the story.

Before “Who Killed Alex Spourdalakis” was produced many questioned how much did Mr. Wakefield’s “Autism Team” contribute to the horrific outcome. Not directly, of course, but in terms of whether a different group of advocates or different advice from Wakefield’s team would have averted the murder. Alex’s mother was offered help from other groups, and declined it. This is a question that can not be independently explored given this team’s dual role of advocate/advisers and documentary videographers. We are also talking about Andrew Wakefield, who in the introduction to one of his books glorified a murder-suicide involving an autistic and his mother.

But I am now falling into the same trap as Mr. Wakefield: losing sight of the actual story. Because the story isn’t “who killed Alex Spoudalakis”. The story is Alex Spourdalakis. A young man, 14 years old when he was murdered, who was a valuable and often happy person who had reached a point in his life when he needed support: medical and other support. He was a person worthy of respect. Disability did not diminish that. His extraordinary needs did not diminish that. In fact, his extraordinary needs were a big part of the story that needed to be told clearly. While one can pick some of his story out of the video, it gets obscured as the video uses Alex and his story to promote the Wakefield message that vaccines cause autism and a harsh criticism for psychiatry and mainstream medicine in general. And the video argues that Alex’s mother is not responsible for the murder due to alleged use of antidepressants.

Alex needed help. A great deal of help. He couldn’t sleep. He had episodes of aggression. He was in the emergency room for weeks in restraints. Much of the video centers around a division between one side, his mother and the “Autism Team”, who felt that these were signs of an underlying gastrointestinal problem and another side, many of the medical staff, who were often pursuing a psychiatric explanation. It would have been valuable to see an honest account of the question of what was behind Alex’s crisis. But we don’t get that in this video. We get an antagonistic approach to psychiatric care and statements that instead “autism is medical”.

Mr. Wakefield and others would do well to recall that psychiatric care is medical care. For some it can be life saving.

Psychiatric and other medications can also result in extreme reactions. And this is a point Mr. Wakefield makes time and again, to the point of actually weakening the point. For example, we are told about how Alex had a serious allergic reaction to one set of medications, complete with a frame showing this event highlighted in his medical record. Not hightlighted but visible is the statement that this reaction cleared up with two doses of Benadryl. Making a big deal out of a reaction that cleared up with Benadryl, an over the counter medicine, struck me as overplaying this point.

Even with the possibility of adverse reactions to psychiatric medication, Mr. Wakefield would do well to recall that autistics can have psychiatric conditions. Mr. Wakefield is in the community that is quick to tell us that autistics often have comorbid conditions. But rarely does this community point out that a large fraction of comorbid conditions are psychiatric. This was explored by the Lewin Group for children. And by Lisa Croen’s team for adults.

Where GI complaints are 1.3 times more common in autistics, anxiety is 3.7 times more common and schizophrenia 22 times more common (just to name a few psychiatric conditions).

Autistics do have a difficult time obtaining appropriate medical care. One doctor told me that 75% of the information they use to make a diagnosis comes from listening to what the patient tells them. But what if a patient is nonverbal and doesn’t have effective alternative communication? Add to this the fact that autistics often have sensory issues. What happens when, as one friend of mine relates, a person can tell you “I’m in pain” but can’t say where that pain is? And this is before we consider issues such as poor insurance coverage for the disabled and other social factors that limit access to care. This is a story that needs telling. Psychiatric medications are prescribed more often to autistics in poor families than in wealthy families. And this video doesn’t do these points justice.

In the video one does get to see Alex. Yes, the images of Alex in restraints in the hospital that were common online shortly before his death. But also Alex before the hospital stay. Alex Happy. Alex Outside. Alex as a human, not a pawn. It’s telling that Alex’s father and sister do not appear in these videos. According to the video, Alex’s father declined to be interviewed. One does see a great deal of Alex with his mother. She is shown giving him a great deal of affection. I don’t doubt her love for her son. The intention, I suspect, is to portray her in a sympathetic light: the loving mother. She’s so loving that something else must have driven her to the brutal murder of Alex, right? At least that is the message I suspect the director was trying to get across. Well, except downplays the brutal nature of the murder. In the end, though, the scenes of affection between Alex and his mother are more jarring than sympathetic. Knowing that this woman would shortly be poisoning Alex and knowing that she is the one reported to have stabbed him repeatedly, well, the affection does not come across as endearing nor sympathetic. Knowing that Alex loved his mother makes the betrayal all the more painful.

One does have to address that horrific outcome, the question posed by the title of the film: who killed Alex Spourdalakis. Interestingly the first sentence of narration tells us: “what turned Dorothy Spourdalakis, a loving mother, and Jolanta Agatha Skordzka, a loving godmother, into killers?” While it is not contested that these are the killers, the video tries to make the case that it’s more complicated than just who actually committed the physical acts of killing. A critic’s statement, quoted on the facebook page for the group who produced the video tells us one interpretation:

The story of Alex is an indictment of our healthcare system’s ability to treat autism as a disease rather than a psychiatric disorder

In this interpretation, “the story of Alex” isn’t about him or how he lived. And we need to reject the possibility that autistics can have psychiatric needs, because autism is a disease.

The video argues that Alex would have had a happy outcome, similar to that of another “Autism Team” subject, had he followed a “medical” approach of treating GI disease rather than a psychiatric one. One sad irony is that Alex’s mother abandoned the GI approach to follow a different disease approach to his care: lyme disease.

The video downplays the events of the actual murder. Instead of giving the full details, the murder is used as one last critique of psychiatry. In Mr Wakefield’s telling of the murder presents it with a recreation of Alex’s father and uncle discovering the crime scene. The scene is merely described initially as Alex was found “dead in his bed”. This for a scene where a young man was stabbed multiple times and had his wrist slit to the point of nearly severing his hand. He had been dead long enough for rigor mortis to set in. The scene that Alex’s father and uncle found would have been grisly, to say the least. Alex had been bleeding and the blood had time to congeal. But we don’t hear those details. By the time the narration gets to the knife wounds, we hear only that he died of a knife wound to the heart. No mention of the slit wrist nor the other 3 stab wounds.

Instead the emphasis is given to the poisoning attempt. We are told how ironic it is that drugs which Alex is alleged to have had adverse reactions to did not kill him. Psychiatric drugs, alleged to have failed him in life, failed in killing him. This point is give far more emphasis than the actual act of killing Alex.

We are told how Alex’s mother and godmother were found near him, unconscious from a drug overdose. Alex’s mother and godmother had just failed to kill Alex with an overdose and yet chose this same method for their attempted suicide.

His mother and godmother were reported to be “semi conscious” when found. And one document, apparently a police report, shown in the video indicates that the mother and godmother were able to answer questions while still in the apartment. Which begs the question, how many pills did they take in their apparent suicide attempt? Were they really in danger of death?

We need to face the grisly nature of Alex’s murder because glossing over the brutal nature of the murder does not do the victim service. It does help paint the killers in a more sympathetic light. We also must face questions raised by these actions. It is stated that when Alex did not die from the overdose, his mother and godmother took to using the kitchen knife. Why? Was he taking too long to die? Did they fear being discovered? Was Alex waking up? How long did they wait for the overdose to kill him? Why didn’t they call for help in that time?

Mr. Wakefield argues in the video that it was once again psychiatry that failed Alex, and at the same time builds an argument that his mother wasn’t really at fault. The video alleges that his mother was taking antidepressants and the side effects include suicidal thoughts and violence, setting the stage for an insanity defense. There are a few problems with making that argument stick, starting with the argument made by the district attorney that the murder was planned in advance. This argument is supported by the fact that Alex’s mother and godmother made his father and sister leave the apartment a week before the murder. This could be a sign of premeditation: that they wanted to the apartment free to commit the murder. This avenue of reasoning is not explored by Mr. Wakefield in his video. Next, this murder was committed by two people, and Alex’s godmother is not alleged to have been taking antidepressants. In this insanity defense scenario, why didn’t the godmother stop the murder? Report the plans? Next, this isn’t a violent murder–or wasn’t intended to be. It started out as a poisoning attempt. We do not know how long they waited for the overdose to kill Alex, but certainly long enough for either of the killers to have second thoughts and call for help, especially the godmother who is not alleged to have been taking the antidepressants. Lastly, the video tells us that there’s no physical evidence of the antidepressants. They allegedly brought from Greece by Alex’s father, who is further alleged to have removed the drugs from the apartment.

At this point in the narrative Alex is dead. We’ve heard heard an argument as to why his mother isn’t guilty of the crime. But Alex isn’t the story of this video. Even “who killed Alex” apparently isn’t the story. The video next presents us with “one vital piece of this puzzle”. This is the segue into claiming that Alex was a victim of vaccine injury. Mr. Wakefield wasn’t content with telling us this at the beginning of the video, he had to bring it up again at the end. We are told that Aex was a child “…whose life was over in so many ways from the age of 18 months.” In one sentence he negates all the video he invested in showing us Alex as a happy, complete human. Being autistic is being a person “whose life is over.”

Recall that Mr. Wakefield has stated that he makes videos target people who are agnostic on the question of whether vaccines cause autism.

We also get a pitch for the idea that what Alex needed in order to avoid his death was more support from Wakefield’s team. That they are going to start the “Alex Spourdalakis Recovery Center”, a place for autistics and their families after seeing Arthur Krigsman. I am at a loss for words other than to say this is absolutely not the solution that comes to mind to avoid another murder like Alex’s.

In the credits we get snippets of video of Alex. Starting with Alex near the end of his life, naked and rocking. While Alex does appear to be happy in these clips, showing him naked without his permission is inappropriate (note that while Mr. Wakefield does not show Alex’s full body, I have further blurred this image). Then, after showing Alex as a baby and flowers for Alex (complete with business card for Wakefield’s Autism Media Channel), the credits end.

But, apparently just in case we didn’t get the message of the video, we need to be shown two more short scenes appear after the credits. Niether shows or mentions Alex. The last message Mr. Wakefield wanted those watching this film to take away. Nothing about Alex, just a simple screen stating “Merck face legal action for alleged MMR vaccine fraud”. The additional sad irony in this is that even if you accept the claims that Alex was vaccine injured and the claims in the lawsuit, the Merck case is unrelated to Alex’s story. It doesn’t involve Mr. Wakefield’s hypothesis of the measles component of MMR being linked to autism. It doesn’t involve allegations of vaccine injury at all but, rather, the effectiveness of the mumps component.

Alex deserved better in life. He deserved medical care, be it psychiatric, standard medical or both, to bring him back to the happy person he was before his crisis. But Alex also deserves better in death. He deserves that his life and death not be used as a tool to promote Andrew Wakefield’s poorly supported one-size-fits-all approach to autism. He deserves to be the story, not have his story framed as “who killed Alex Spourdalakis”.

Alex deserves better.


By Matt Carey

Thinking Person’s Guide to Autism: How ASAN Helped Issy Stapleton Get Justice

18 Nov

Isabelle (Issy) Stapleton is an autistic teenager. Her mother, Kelli, was recently sentenced in the attempted murder of Isabelle. The Thinking Person’s Guide to Autism has an interview with Autistic Self Advocacy Network’s Samantha Crane on How ASAN Helped Issy Stapleton Get Justice.

Here’s the TPGA introduction to the article:

Kelli Stapleton was recently sentenced to 10 to 22 years in prison for child abuse, after attempting to kill her autistic teen daughter Issy. We spoke with lawyer Samantha Crane, who is the Autistic Self-Advocacy Network’s Director of Public Policy, about ASAN’s efforts on the Stapleton case: both in helping the prosecution send the message that disability does not justify murder, and in urging the court to ensure Issy saw the same justice as any other victim of felony child abuse.

The full interview can be read at How ASAN Helped Issy Stapleton Get Justice


By Matt Carey

Comment on: Diagnosis of autism, abortion and the ethics of childcare in Yoruba culture

9 Nov

I have an email alert from PubMed for autism. I’ve seen a few very problematic papers go by over the years, but this one really bothers me. The study is from Nigeria, home of much of the Yoruba people. I have not seen the full paper, but from the brief abstract it appears that the Yoruba people have developed moral principles that create an accepting environment for autistic children. They believe in “equality of humans at birth” and “solidarity”. The author of the study appears to take the position that “despite these justifications” there is a need for a “contextual rethinking” which would allow for aborting fetuses deemed to be at high risk for autism.

Note that there is not existing test to determine that a fetus is at high risk for developing autism. And even if there were, really? We need contextual rethinking to allow for abortion of autistics? And this is in a medical journal?

Acceptance, equality and solidarity should not preclude diagnosis and support for autistics, but I wonder if the author is going beyond that in his/her call for these Yoruba principles from prohibiting treatment.

Here is the abstract:

Indian J Med Ethics. 2014 Oct-Dec;11(4):245-8.

Diagnosis of autism, abortion and the ethics of childcare in Yoruba culture.

Fayemi AK.

Author information

Abstract

This paper examines the ethics of childcare in Yoruba culture in the contexts of autism and abortion. The traditional Yoruba moral principles of ibikojuibi (equality of humans at birth) and ajowapo (solidarity) have been theoretically developed to establish the personhood of autistic children and provide a justification for not aborting foetuses with autism. Despite these justifications, this paper argues that there is a need for contextual rethinking, which would allow for: (i) prenatal genetic testing, as well as abortion of foetuses with a high risk of the autism mutation, and (ii) early clinical diagnosis and treatment of autistic children in contemporary Yoruba society.


By Matt Carey

London McCabe

8 Nov

London McCabe was a six year old kid.  He was a kindergartner whose principal described him as loving to sing and happy.  He liked hats.

I wish when news outlets would report on murders, they would start with who was killed.  The good points of the person.  What we as a people lost.

I bring that up because, as you likely suspect, London McCabe was killed.  Earlier this week, London McCabe was killed when his mother threw him from a bridge, from which he dropped about 133 feet to the frigid waters of a river below.  That’s about a three second fall.  Three seconds is short, I grant you, but long enough to feel abject terror.

If news articles focused on the victim, perhaps that sort of fact would come forward.  Perhaps we would be put in the place of sympathizing with the victim.

When you think of secondary victims, they would be the family and friends who knew and loved London.   People who had no way to avoid thinking about how he died.  I know I can’t avoid it. I can’t avoid thinking of my own kid terrified and falling.

I wish news articles wouldn’t immediately jump on the disability (or disabilities) of the victim, like the first article I saw.  For London McCabe was autistic.  Nonverbal.

Facts about motive are very scarce right now.  There are indications that the mother suffered from some mental illness.  As a community we’ve seen that argument play out all too often as a “blame the victim” approach: it’s hard to raise an autistic child and the parent buckled under the pressure.  We’ve seen this approach used cynically.  That doesn’t preclude actual mental illness in this case.  We ask for equality in the treatment of those who kill in our community.  Equality means not throwing our friends in the mental illness community under the bus.  The disability of the victim is not an excuse.  It is not a mitigating factor.  Real mental illness is.  Let’s see what the facts are in this case.

London McCabe’s family is not ready to discuss the details, but has released this message at a prayer vigil:

We are deeply touched by the community outpouring of love and support for our family…The best way you can honor him and not let his death be in vein is to purpose in your hearts to respond in kindness, love and respect toward all those people in your lives especially those with special challenges…Don’t allow hatred, anger, bitterness, or revenge to fill your heart

By Matt Carey

Gigi Jordan found guilty of manslaughter in killing of her son Jude

6 Nov

Jude Jordan was an autistic boy. He was murdered by his mother. I use the term “murdered” in the colloquial sense of “a person deliberately took his life”. Legally it wasn’t murder. Legally it was manslaughter as the mother, the murderer, argued extreme emotional disturbance. Her story was convoluted, but she argued that she believed her son was being sexually abused by multiple people, including his biological father. She also argued that she believed that her ex husband intended to kill her and that would lead to the biological father becoming Jude’s caregiver. Having read documents she’s put online (she has some on a new website(http://www.gigijordantruth.com/) and more were on a now defunct website). I find her arguments seriously difficult to believe.

Jude’s mother is estimated to be worth about $50M. She had the money to hire a team of high powered attorneys to argue her case. And she will pay them more to appeal her case. But apparently she didn’t feel that she could use that $50M to hire attorneys to insure that someone she trusted could take care of Jude in case she died.

If you search for Gigi Jordan on Google, you can find her website right away. Because someone has bought advertising space for it. She apparently put that up as part of her media blitz that coincided with the jury going into deliberations.

But back to the important part of the story. Jude Jordan is dead. And the person who killed him may serve as little as 5 years in prison for the crime.

As happens whenever a news story about a parent killing his/her autistic child is put online, the comments include “walk in the parent’s shoes before you judge”.

Here’s the thing: I am a parent of an autistic child. A child with a very high level of challenges. I can’t say I’ve walked in Gigi Jordan’s shoes. I don’t have $50M like she did (how much is left after paying attorneys is unknown). I don’t know that I can set up a trust to care for my kid long after I’m gone. I can’t quit work to spend my years caring for my kid, as I would like. Gigi Jordan could do all of that.

As long as we are talking about walking in other people’s shoes: Gigi Jordan will never be able to walk in my shoes again. I love my time with my kid. And I want to protect my kid from caregivers in the future who think that one can murder a disabled kid and get a light sentence. And she’s part of the problem. When she gets a light sentence, it diminishes every disabled person’s chances of living a life free from the threat of caregiver abuse and/or murder.


By Matt Carey

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