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TPGA: Black and Autistic – Is There Room at the Advocacy Table?

8 Jul

An excellent article came out on the Thinking Person’s Guide to Autism last month: Black and Autistic – Is There Room at the Advocacy Table?

This article speaks to me because it takes on two topics that are very important to me. First, the under diagnosing and under serving of racial/ethnic minorities in the U.S.. Second, the recent cynical abuse of the African American community by people who are antagonistic towards vaccines.

In Black and Autistic – Is There Room at the Advocacy Table?, Dr. Pierrette Mimi Poinsett gives her perspective. Here’s one paragraph:

As both a Black pediatrician and mother of a son with severe mental health and learning disorders, I know that vaccines prevent diseases, save lives, and do not cause autism. Many studies unequivocally show that there is no connection between vaccine components and the development of autism. Autism manifests independently of the vaccine schedule. The reality is that autism is a complex neurodevelopmental condition that likely has both genetic and environmental components – components that do not include vaccines.

The full article is brief and to the point (my discussion is longer than the original article). I encourage readers to go to TPGA and read it.

This said, let me add a few thoughts of my own.

First, we do a poor job as a society in supporting people with disabilities, but this is a much bigger issue in racial/ethnic minority communities. This is very obvious. I found this over and over as I first explored the question of whether autism was an epidemic caused by vaccines. Countering this failure by our society has been a topic of my advocacy here, on the IACC and elsewhere.

Over the years it has been extremely frustrating to watch the groups who claim vaccines-cause autism deny this under diagnosing and under serving. The fact is that almost all autism prevalence studies show a lower apparent prevalence in minorities. And this presents a problem to the groups promoting autism-as-vaccine-injury: they need to explain why would vaccines (in their view) not affect minorities as much as non minorities?

I will also point out that these vaccines-cause-autism groups seem to be conveniently ignoring their past. Consider this example, an excerpt from an Age of Autism blog article from a few years ago (The Tipping Point: Questions about Autism, History, Race and Melanin)

Two years ago, it was unknown whether African American or Hispanic children had lower rates of autism than white children. Now there’s evidence—for what it’s worth— that certain groups are less affected.

A few years ago they were claiming that the lower rates of autism identification meant that African American and Hispanic children were “less affected” by vaccines. Now, with Brian Hooker’s (retracted) re-analysis of an old CDC dataset, they are claiming the opposite. Either way, they are wrong.

Why do they twist themselves into these logical pretzels? They have to accept that autism prevalence numbers are accurate counts of autistics (they aren’t) in order to support the idea of an epidemic. If they accept the fact that we still not diagnosing all autistics, then the data that shows an epidemic is in question. African Americans and Hispanics have lower reported prevalence numbers in the CDC autism studies. So they are forced to come up with explanations for some groups being “less affected”.

Getting back to that Age of Autism article we read:

Until it unfolded that the highest rate of autism in the world might be among the Minnesota Somali (1/28 or 1/26 depending on the source), it was a vague impression within the vaccine injury community that autism was, for lack of a better expression, a “blonde disease” or even a “redhead disease”. It just seemed to many that, with some exceptions, the paler the kid, the more likely they’d be impacted.

As we now know, the autism prevalence in the Minnesota Somali community is the same as the rest of the community around them. Moving past that point, did you catch that “blond disease” comment? Yes, rather than try to solve the problem of actually helping solve the problem of under diagnosis and lack of services in minority communities, they went into full denial mode and were labeling autism as a “blonde disease”. The same writer then goes into a complex (and confused) argument about how melanin is protective against mercury poisoning.

Did I mention that these Age of Autism articles are confused? The author ties herself into logical knots trying to cover all aspects of the discussion, while considering the conspiracy possibilities of each angle. Consider this line from the article:

On the other hand, if the CDC merely underreported rates of autism among minorities as part of a cover up of lack of assistance of minority children with autism, it would be appalling but not surprising.

Such a profound lack of awareness of facts there. First off, the CDC has been clear that the racial/ethnic disparities could be due to lower identification rates. CDC tends to be conservative in their language, but this early CDC report makes it clear that the disparities could be driven by socioeconomic factors. By this year’s report, CDC are actively calling for “[t]argeted strategies are needed to increase awareness and identification of ASD in minority communities.”

And, of course, there’s that “but not surprising” comment from the Age of Autism. Because one can expect people at the CDC, people who have dedicated their lives to helping people with disabilities, to be engaging in “cover ups”. One can believe this, if one abandons logical thinking. Ironically, it’s the Age of Autism and like-minded people who have abandoned their responsibility to advocate for communities with under-diagnosed autism. Yes, AoA, this is a big example of where you show that you are fake autism advocates and will abandon our community for your own attacks on vaccines.

We can also read this rather astounding logical pretzel–if vaccines don’t affect minorities as much, then that would mean that the CDC and others are somehow less evil than expected. No really, read this:

But if that disparity in autism incidence is real, considering government health agencies’ and mainstream medicine’s history of supporting racist policies like the Federal Violence Initiatives, etc., if differences in melanin or other forms of natural resistance among certain minorities do play a protective role against vaccine toxins, then one thing would be clear: the epidemic probably wasn’t planned. That’s because these same “eugenitic” general authorities and often racially exploitative pharmaceutical corporations (deaths from Pfizer’s Trovan in Nigeria?) would probably never have deliberately culled white children over black and Hispanic in the US.

Yes, somehow in their eugenic plan to use vaccines to to eliminate racial/ethnic minorities, the CDC missed the mark and “culled” whites instead. Per the Age of Autism’s amazing logic.

All this rather than AoA actually advocating for better awareness, better access to diagnosis, better access to services in racial/ethnic communities. You know, the sorts of things the CDC and research community have been working on for some time.

But now with bad Wakefield documentaries and junk science from Brian Hooker the African American community is no longer seen as a liability to the “vaccines-cause-autism” movement.

The sudden turnaround to embrace the African American community is so very cynical and hypocritical.

I could go on as I feel very strongly about the failure of our society to serve racial/ethnic minority communities. But I see that I’ve already written more than Dr. Pierrette Mimi Poinsett did in her excellent article: Black and Autistic – Is There Room at the Advocacy Table?.

—
By Matt Carey

FDA proposes a ban on electric shock devices such as used at the Judge Rotenberg Center

28 Apr

I’ll keep this simple and direct: the FDA has proposed a new rule: Banned Devices; Proposal to Ban Electrical Stimulation Devices Used to Treat Self-Injurious or Aggressive Behavior.

Here’s the summary from that document:

SUMMARY: The Food and Drug Administration (FDA or we) is proposing to ban electrical stimulation devices used to treat aggressive or self-injurious behavior. FDA has determined that these devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated by labeling. FDA is proposing to include in this ban both new devices and devices already in distribution and use.

Also:

We are aware of only one manufacturer, JRC, that has recently manufactured ESDs and that currently uses ESDs, including devices that we have not previously cleared.

JRC is the Judge Rotenberg Center, a residential school in Massachusetts for disabled students, many of whom are autistic. The JRC uses the ESD’s (electrical stimulation devices) as punishments to try to control behavior for some of their students. According to the document, the JRC used their devices (called GED at the school) on 82 individuals in 2014.

The document states that a parent group from the school and 2 former students provided comments in support of keeping the shock devices. One student and

In addition to NASDDDS and a JRC parents group, referenced earlier, 15 other organizations concerned with the treatment and the rights of individuals with disabilities spoke at the Panel Meeting, all of which supported a ban. Twenty-two disability rights organizations submitted written comments to the Panel Meeting docket, one of which was signed by 23 disability rights groups. Nine of these organizations were among the 15 represented at the Panel Meeting. All of these comments support the ban. FDA also received a comment from the U.S. Department of Justice Civil Rights Division supportive of a ban, and we considered information from the National Council on Disability, the National Institutes of Health, and the United Nations Special Rapporteur on Torture.

The FDA is not just relying upon community input. They also note the scientific literature which shows significant risks of PTSD and anxiety and other adverse events following the use of shock devices.

Here is a survivor’s letter, an account from a former JRC student who was subjected to the shocks.

The JRC was in the news after a student was tied to a board for 7 hours and shocked 31 times. The original news story links are no longer valid, but I will try to find them and link to them here.

The shock devices just do not have a sound backing–scientifically or ethically. If this FDA rule goes into place, the days when disabled students in America can be subjected to electric shocks like these will come to an end.

—

By Matt Carey

Andrew Wakefield to Grace Hightower: “your family’s life [has] been blighted by autism”

22 Apr

One thing I have noticed over the years–those who are antagonistic towards vaccines are quite willing to use the disability community, but are rarely willing to offer us respect. Consider Andrew Wakefield, who introduced one book with a fictionalized account of a mother murdering her autistic child. He framed it as an act of love by the mother. Or his film, “who killed Alex Spourdalakis”. Alex was an autistic young man with extraordinary needs. Andrew Wakefield tried to make Alex’s life  into an episode for his (now failed) reality TV show. When Alex was brutally murdered by his mother and another caregiver, Wakefield took his footage and made a film.  It was an apology piece for the murders, using Alex as a hammer to attack mainstream medicine.

So now we have Wakefield apparently leaking his celebrity emails and showing again his misunderstanding for and contempt of autistic people. This is discussed at length by ScienceMom at JustTheVax: Paging De Niro and Hightower…Wakefield isn’t really in it to help autistics

I’ll just quote one email:

On Mar 29, 2016, at 9:18 AM, Andy Wakefield wrote:
Grace, whatever may have happened – and I guess I will never know – in truth my heart goes out to you and Bob. Not only has your family’s life been blighted by autism, but you have experienced some of the relentless and ruthless pressure that has been my life for as long as I can remember.
In truth and healing
Andy
—
Andy Wakefield
Director
Autism Media Channel

Just to be clear, Mr. Wakefield:

My child is not a blight. On me, my family or on anyone else.
My child is not blighted.
My life is better for my child. Challenges, struggles and all.

Just to be clear Ms. Hightower: if you didn’t respond to Mr. Wakefield in a way similar to the above, shame on you. But, while I am at it, shame on you for promoting this man and his damaging message. If you believe him, take a moment and ask yourself: if he’s lying (he is) how much harm has he caused to me, my family and mostly my son?

When you dehumanize people Mr. Wakefield, you make it easier for people to murder my child. You made it easier for people to abuse my child. You make it easier for people to disrespect my child. It is already a struggle to get adequate supports and assistance. How much will people be willing to help the “blighted”?

My child doesn’t need the charity of pity. My child needs the helping hand of respect.

And you, Mr. Wakefield, are in the way of that.

People ask me why do I spend my time countering your misinformation. This is why.

—
By Matt Carey

Jude Mirra’s mother sentenced to 18 years for murder

31 May

Jude Mirra was murdered .  His mother gave her son an overdose and killed him.  For this she has been sentenced to 18 years, included the five she has already spent in jail.  

Jude was autistic.  His mother spent years and part of her fortune in an attempt to cure him.   She claimed in the end there was a fantastic and complicated plot to harm her son and that the murder was somehow a mercy killing to save him.  

Jude deserved to live.  Thankfully the sentence doesn’t appear to have been lightened because he was disabled (although the prosecution did ask for 25 years).

This won’t bring Jude back and I wish his family (not including his mother: she gave up the right to claim to be his family) well.  I thank the court for a conviction and a sentence that will make others think twice before contemplating the murder of disabled family members.

—

By Matt Carey

I like living in a free country

25 May

In the world of vaccine antagonistic groups and the fake-medical approach to “treating” autism (how can you “treat” anything with fake medicine like MMS?) we hear a lot about the lack of freedom and how we are in some sort of a police state. Anyone who openly counters the misinformation is likely to be branded a “Nazi” or similar epithet (remember Andrew Wakefield’s video where he claimed the CDC were running a new Tuskegee experiment with vaccines, and that the CDC were worse that Hitler, Pol Pot and Stalin? And remember how many groups and blogs actually promoted this embarrassment?)

Much as it is aggravating to watch my own community (autism parents) spread misinformation and work against public health (remember J.B. Handley bragging that his team are “… in the early to middle stages of bringing the U.S. vaccine program to its knees”?). Much more, it’s very, very painful to watch groups like AutismOne promote fake medicine (for example chelation, chemical castration, bleach enemas) for use in disabled childen.

I’d be very happy if these practices ended. But I do not, have not and will not advocate that these groups be “silenced”. I and others counter the misinformation. And that’s the way of a free society.

I was reminded of this in a recent business trip. To Beijing, China. I did not blog during that time and not just because I was very busy. WordPress (the platform on which LeftBrainRightBrain.co.uk is hosted) is blocked in China. As are Twitter, Facebook, Yahoo, Gmail, Google and many other sites.

Groups with misinformation complain that they aren’t given “balance” in the press in the U.S.. They complain over and over (and over) again in ways which are just not available in a non free society.

I was attending a science/engineering conference. Conferences are very different from parent conventions like AutismOne and the newer Generation Rescue meetings. While they bill themselves as conferences and they have “scientific” talks, they lack one very important thing: criticism. No one stands up and speaks out against clearly wrong ideas. Mark Geier, for example, can stand up and give a ridiculous talk about mercury and testosterone (which is in reality just an advertisement for his “Lupron Protocol”) and no one will stand up and say, “Mark, could you explain how your logic, in which you discuss mercury/testosterone complexes produced in beakers of hot benzine, has anything to do with the brains of autistic children?” (which is how scientists say, “your talk was a bunch of hokum”).

No. No one speaks out. Not any of the self-proclaimed leaders of this movement. Not Andrew Wakefield. Not Mark Blaxill. Not Brian Hooker. Not anyone at the Age of Autism Blog, the so called “thinking mom’s revolution”, AtuismOne. The list goes on and on of the fake leaders. They lack courage. Plain and simple. They will never stand up to people who claim that vaccines cause autism, no matter how wrong or harmful their proposed “therapies” are. They will circle the wagons and accuse their critics of being against treating autistics.

You want to talk courage? Of all the sites in Beijing that people wanted to see, Tiananmen Square was number one. And for only one reason: to stand where perhaps the bravest act I’ve ever seen happened. I’m speaking of the man who stopped a row of tanks in 1989.

Tienanmen Square is the fourth largest public square in the world. But public is an interesting word. The square is closed to the public from 10pm to 5am. And when it is open all entry points require a security check. And there are security cameras. Everywhere cameras. To get to the Palace (the Forbidden City) one must walk through a few large gates. No big deal there. But at the first gate, the one leaving the square (the one with the giant picture of Mao on it), I counted no fewer than 20 security people watching people walk through.

After you pass through the first two gates, at the entrance to the Forbidden City, just across from the Palace Museum ticket booths, there is a small garrison.

DSCN1852

Think that is a ceremonial guard? Well, if you come back later, the guys are training in camo gear. And how about the armored personnel carrier?

DSCN1900

Those who throw out terms like “police state”, “Nazi” and “censorship” belittle those who live under a very real, very strong, controlling government.

And don’t mistake the fact that my ability to write here is very dependent on living in a free society. As I noted above, WordPress is blocked in China. And I have little doubt that many of those who ask for “health freedom” would not support a free criticism of their actions were they in power.

Coincidentally, today is Memorial Day in the U.S.. A day when we remember and thank those who served and especially those who gave all in the protection of our freedom. I am more aware than ever of what they have given to me and my family. I don’t think that those with failed ideas about autism, vaccines and more who cry about a lack of “freedom” honor the people who fought for that very freedom.

There’s a reason why those ideas don’t gain traction. It’s not because they aren’t heard. They are heard. The ideas fail because they aren’t right.

—
By Matt Carey

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.

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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

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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.

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By Matt Carey

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