Response on Stem Cell Therapy

This is a response to a question I was asked. Here's the question.

Dear Alyssa, Greetings from India I found your blog while I was researching about special schools in China. I enjoyed reading your posts. I wanted to know your opinion on stem cell therapy for autistic individuals. What are your thoughts? Do you support it? Do you think its useful, not just in terms of autism but also for other neurological disorders. I would love to know your perspective. Love, Avantika

The short answer is that I don't support stem therapy "for autism"  (it makes no sense) but I do for people with conditions where stem cell therapy makes sense (some heart stuff, liver stuff, sometimes Crohns) who are also autistic.

There's a few different opinions that are all part of the long answer.

• There's my opinion on stem cell therapy in general.
• There's science side, is stem cell therapy even relevant to anything about autism?
• There's my opinion on biomedical treatment of any kind "for autism."
• There's my opinion on stem cell therapy for other reasons on people who happen to be autistic.

Anyways.

Stem Cell Therapy in General

My opinion on stem cell therapy in general is that it's still pretty experimental, but there are things it's been shown to work at least some with. It's used for some liver stuff, some heart stuff, some neurodegenerative stuff, osteoathritis, and Crohns. What all these things have in common, so far as I can tell, is that adding new cells that work like patients and doctors expect them to work helps with whatever the patient doesn't want their body doing. 

Some people have ethical issues with stem cell research and therapy for various reasons. As a sciency person, I know that most of those concerns don't even apply in quite a few stem cell areas (adult stem cell lines and umbilical lines have nothing to do with abortion, fetal lines coming from "spare" fertilized eggs after in vitro could become people if implanted but it's also not abortion, and I'm pro-choice anyways.) So I think stem cell research and resulting therapies are really cool, as long as they 1) are working towards a goal that the person being treated supports (not a parent, not a doctor, not a caretaker, the person being treated) and 2) there's scientific reason to believe that it can (help) accomplish the goal. The amount of evidence needed is less for treatments that the person being treated knows are experimental, like as part of a study, and more for stuff that we're saying is known to work. Which level of evidence a person being treated wants before they agree to it (and there has to be consent here) is up to the person.

Relevance to Autism

Going back to what the things being treated have in common, these are conditions where adding new, healthy cells can help with whatever the problem is. Autism does not fit the bill, even a little bit. Even if you hold with the idea that autism is somehow terrible and reducing "symptoms of autism" is the holy grail of treatment, the relevance of stem cell therapies to autism itself is doubtful. Some evidence suggests that we've got extra brain cells and connections in comparison to neurotypical expectations, among other things. 

This isn't a statement about stem cell therapy for autistic people who could benefit for other reasons, like if an autistic person also had Crohns or osteoathritis or any of the other stuff that's getting successfully treated with stem cell therapy, the question would be about relevance to that condition rather than autism.

But no, stem cell therapy is not relevant to autism.

Biomedical Stuff for Autism

Biomedical treatments "for autism" are generally pretty confused about what they're supposed to be treating, how it's supposed to work, and everything in between. Stem cells "for autism" don't look like an exception here. 

At best, such treatments are aimed at reducing discomfort that we have for other reasons (like the fact that autism and epilepsy can occur together, autism and autoimmune stuff can occur together, just by sheer probabilities, unless autism and condition X are not independent (having one affects the chance of having the other) they will occur together for about 1% of people with condition X.) Those treatments would actually help with the condition they're properly meant for, and make autistic people who have that other condition more comfortable. Often, our being in less distress is wrongly taken to mean that we are less autistic, and so people decide that this treatment now reduces "autism." For an autistic person who also has any of the stuff that stem cell therapies are actually good for? The relevant form of stem cell therapy could go here.

At worst, such treatments are actively abusive and have no reason to work. Bleach enemas, chelation, chemical castration, and a lot of other "biomedical" and "alt med" things people do "for autism" go here. If the autistic person in question doesn't have anything for which stem cell therapies are actually relevant, then stem cell therapy may well go here.

Regardless, treatments "for autism" are also rooted in the idea that autism is wrong or lesser, while neurotypicality (or being able to fake it) is ideal. That's directly opposed to the neurodiversity paradigm, so the idea of any treatment "for autism" is not high on my list of good things. 

Rather than trying to make Autistic people be "less autistic," I support giving us the treatment and tools that help us live better lives as Autistic people. If we've got any stuff going on that's causing us problems (I've got asthma, for example,) then treating those problems is just as good an idea for Autistic people as it is for those lacking autism. People tend to prefer feeling good to feeling sick, after all. The problem is when people conflate "feeling better from other stuff" with "less autistic." We're not actually less autistic, and less autistic isn't actually a good goal anyways.

I've talked a bit about what education that's based in teaching us to live well as autistic people could look like, but it's so unusual that finding anything like that is tough. That's also not particularly the point of this answer, but if you're interested, here are a few:

• But AAC Increases Speech!'
• Growing up into an Autistic adult
• Education and Services, by Autistic people, for Autistic people
• More than two options

Stem Cell Therapy (when the person is also Autistic)

I don't see how this is different from stem cell therapy when the person isn't autistic. If someone has a condition where stem cell therapy is actually relevant, them being autistic isn't a counter-indicator.

Some More Notecards

Trigger Warning: Discussions of ineffective and dangerous autism "treatments"

So, here's notecards from two sources where the person is explaining why their treatments work. I have included "Science Check" sections for some statements as a note to myself that I should check the scientific accuracy of certain statements (or source the disproof, since some of them I know to be false.)

From the Geier's patent application filed in 2006:

Geier, Mark R., Geier, David A. (2006). US Patent Application 20060058241. US Patent and Trademark Office.

• The first patent application by the Geiers for using a lutenizing hormone to treat autism, filed in 2005 and published in 2006, listed itself as a treatment for "disorders having a component of mercury toxicity" and is a method of lowering mercury by giving both a chelating agent and the hormone, generally in the form of Lupron.
• This application listed autism, autism spectrum disorders, attention deficit disorder, attention deficit hyperactivity disorder, mental retardation, Asperger's syndrome, childhood psychoses, stammering, stuttering, tics, repetitive movements, eating disorders, sleep disorders, enuresis, developmental language disorders, developmental speech disorders, developmental delay, Alzheimer's disease, diabetes, heart disease, obesity, amyotrophic lateral sclerosis, nephritic syndrome, renal failure, asthma, systemic lupus, autoimmune thyroiditis, rheumatoid arthritis, arthritis, vasculities, myelitis, glomerulonephritis, optic neuritis, infantile cerebral palsy, epilepsy, migraine, toxic encephalopathy, cerebral degenerations, anterior horn cell disease, spinocerebellar disease, extrapyramidal disease and myopathy as possible disorders to be treated with this method, though the preference is to treat a male child with both autistic spectrum and precocious puberty diagnoses or a male child with both autistic spectrum and mercury toxicity diagnoses.
  
  • Science Check: Relation of mercury to ALL THE THINGS.
    
• The treatment can also include an antiandrogenic hormone, or, in the case of female patients, estrogen and/or an antiandrogenic hormone
  
• Also claimed in this first application is a method of determining if a child is susceptible to autism using testosterone levels.
  
• The Geiers claim that the mercury contained within the thimoserol in vaccines may be binding to testosterone in autistic subjects, citing both a study in which mercury chloride, an inorganic mercury salt, bound to testosterone in hot benzene and their own paper which claims autism rates are significantly higher in children who received vaccines containing thimoserol than in those who received thimoserol-free vaccines.
  
  • Science Check:
    
    • Thimoserol/autism link (well, lack of link...)
      
    • Mercury/autism link in general (also lack)
      
    • Differences in reactions in human body vs other conditions
      

From Kerri Rivera's presentation about MMS at the 2012 Autism One Conference:

Rivera, Kerri (2012, May). 38 Children Recovered in 20 Months with MMS [PowerPoint Slides]. Paper Presented at Autism One/Generation Rescue Conference, The Westin Hotel, Lombard, IL. Retrieved from http://www.autismone.org/sites/default/files/rivera.pdf.

• MMS is a mixture of citric acid and sodium chlorite which releases chlorine dioxide, an oxidizer used for municipal water purification.
  
• Kerri uses Schopenhauer's quote about the stages of truth as evidence for MMS.
  
• Chlorine dioxide is a powerful oxidizer which can accept five electrons from other substances, and it has been used against fungus and bacteria as well as disinfecting municipal water.
  
• Rivera claims that human tissue will not be harmed by chlorine dioxide because it has a lower voltage (.95) than oxygen (1.28), but that pathogens have no resistance due to the oxidation potential.
  
  • Science checks on:
    
    • oxidation potential actually being measured in volts
      
    • chlorine dioxide and oxygen having the claimed potentials
      
• the fact that oxygen can't hurt tissue (since I know concentrated oxygen actually can)
  
• The fact that it is used to disinfect hospital floors, and slaughterhouses is used as evidence of efficiacy against pathogens.
  
• Rivera claims that "It neutralizes by removing the electron shells of heavy metal compounds (i.e. ethyl/methyl mercury) destroying the molecules. They are therefore returned to their natural states, so the body is then able to remove them."
  
  • Science Checks on:
    
    • ClO2 reactions with ethyl/methyl mercury
      
    • toxicity of products of these reactions
      
• MMS does not claim to be a stand-alone treatment in autism recovery (cure,) but rather part of a treatment program.
  
• Rivera claims that autism is made from pathogens including food allergies, inflammation, heavy metals, candida, parasites, bacteria, and viruses, and that MMS kills the pathogens and neutralizes the heavy metals. She also claims that MMS reduces inflammation.
  
  • Science Checks:
    
    • Autism linked/not linked to these things.
      
    • Most of these things not being pathogens anyways.
      
• A restricted diet is required for the use of MMS- antioxidants, juice, citrus fruit, and pycnogenol are to be avoided, for example, and it is recommended that 72 hours be taken off before blood tests.
  
• Kerri notes that a fever sometimes happens and that if it does, this is a good thing and shows that the MMS is working.
  
• Rivera is from the AutismO2 clinic, a clinic for hyperbaric treatments for autism (which will also be discussed.)
  

Lupron Notecards

General Trigger Warning
I think that the patent applications and this is enough for the Lupron "cure."

Dr. Mark Geier prescribed Lupron to reduce testosterone, which he says binds to mercury, in an effort to treat autism. He believes that mercury in childhood vaccines is linked to autism, which has been debunked by the CDC on several occasions.

Bernhard, Blythe. "Controversial Autism Doctor Loses License Elsewhere, but Can Still Practice in Missouri, Illinois." St. Louis Post-Dispatch. N.p., 04 Oct. 2012. Web. 15 Oct. 2012.

Mark Geier claims that there are many peer-reviewed studies to support his theory, but all papers linked on his site have either himself or by his son, David, who is not a licensed doctor and did not complete medical school.

Bernhard, Blythe. "Controversial Autism Doctor Loses License Elsewhere, but Can Still Practice in Missouri, Illinois." St. Louis Post-Dispatch. N.p., 04 Oct. 2012. Web. 15 Oct. 2012.

Dr. Steven Rothman notes the complete lack of evidence that Lupron has been helpful for any autistic children and that Lupron should not have been attempted without strict controls and strong evidence that it should work, both of which were lacking in Dr. Geier's work.

Bernhard, Blythe. "Controversial Autism Doctor Loses License Elsewhere, but Can Still Practice in Missouri, Illinois." St. Louis Post-Dispatch. N.p., 04 Oct. 2012. Web. 15 Oct. 2012.

Dr. Mark Geier has had his license suspended or revoked in nine states in the last two years, with active complaints against him in three other states due to this hormone therapy.

Bernhard, Blythe. "Controversial Autism Doctor Loses License Elsewhere, but Can Still Practice in Missouri, Illinois." St. Louis Post-Dispatch. N.p., 04 Oct. 2012. Web. 15 Oct. 2012.

Dr. Geier stated in 2011 that he had prescribed Lupron to hundreds of children.

Bernhard, Blythe. "Autism Doctor with Clinic in St. Peters under Scrutiny." STLtoday.com. St. Louis Post-Dispatch, 28 July 2011. Web. 15 Oct. 2012.

The Maryland board holds that this treatment endangers children, having a "known substantial risk of serious harm" and no evidence to support the effectiveness. The Institute of Medicine and the American Academy of Pediatrics have also criticized his work.

Bernhard, Blythe. "Autism Doctor with Clinic in St. Peters under Scrutiny." STLtoday.com. St. Louis Post-Dispatch, 28 July 2011. Web. 15 Oct. 2012.

In six of nine cases reviewed by the Maryland board, Geier gave autistic children an incorrect diagnosis of precocious puberty, sometimes diagnosing children too old for the condition, and then prescribed them with Lupron.

Callahan, Patricia, and Steve Mills. "Board: Drug Therapy for Children with Autism Was Risky." Chicago Tribune. N.p., 04 May 2011. Web. 15 Oct. 2012.

In one case, a nine and a half year old (too old for a diagnosis of precocious puberty) was nonetheless diagnosed with this condition, then started on Lupron. Geier also ordered chelation therapy for this boy.

Callahan, Patricia, and Steve Mills. "Board: Drug Therapy for Children with Autism Was Risky." Chicago Tribune. N.p., 04 May 2011. Web. 15 Oct. 2012.

Prescribing Lupron, a drug sometimes used to chemically castrate sex offenders, to autistic children, is based upon the (unsupported) theory that autistic children have too much testosterone, which then interacts with mercury, causing their autism.

Tsouderos, Trine. "Autism Drug Lupron: 'Miracle Drug' Called Junk Science." Chicago Tribune. N.p., 21 May 2009. Web. 15 Oct. 2012.

Experts note that giving unsupported treatments the credit for normal developmental leaps is common, and that this is most likely why parents continue believing in these treatments.

Tsouderos, Trine. "Autism Drug Lupron: 'Miracle Drug' Called Junk Science." Chicago Tribune. N.p., 21 May 2009. Web. 15 Oct. 2012.

The program for Lupron that Geiers prescribes is 10 times what it used for early puberty, one of the few approved uses of the drug.

Tsouderos, Trine. "Autism Drug Lupron: 'Miracle Drug' Called Junk Science." Chicago Tribune. N.p., 21 May 2009. Web. 15 Oct. 2012.

The paper which supports the mercury/testosterone/autism link was written by Dr. Geier himself, and experts have called the conclusions baseless and the study deeply flawed. The results that are used to "show" higher testosterone levels do not actually show this, nor do the other results in his paper. Notably absent were tests which could have answered the question of "Are these kids actually having early puberty?"

Tsouderos, Trine. "Autism Drug Lupron: 'Miracle Drug' Called Junk Science." Chicago Tribune. N.p., 21 May 2009. Web. 15 Oct. 2012.

Endocrinologists note that Lupron would also cause children to miss the beneficial effects of puberty, such as cardio health in both genders and bone density for the girls.

Tsouderos, Trine. "Autism Drug Lupron: 'Miracle Drug' Called Junk Science." Chicago Tribune. N.p., 21 May 2009. Web. 15 Oct. 2012.

Mark Geiers, however, claims that the experts dismissing his work do not know what they are talking about, stating that their lack of experience with autistic children disqualifies them from discussing hormone disorders in autistic children. His son, David, claims that many autism scientists support his work. However, one name he lists, Simon-Baron Cohen, has already stated his disgust at the treatment, suggesting that the claims of support are not as they seem.

Tsouderos, Trine. "Autism Drug Lupron: 'Miracle Drug' Called Junk Science." Chicago Tribune. N.p., 21 May 2009. Web. 15 Oct. 2012.

Geiers are still attempting to patent this treatment, though the application has been reduced from 109 claims to 30, none of which now mention mercury. The remainder of the patent application still has significant reference to mercury, however.

Carey, Matt. "Lupron, Soon to Be a Patented Autism treatment?" Left Brain Right Brain. N.p., 1 June 2012. Web. 17 Oct. 2012

The mercury binding to testosterone which is the main basis for the effectiveness of Lupron for autism was demonstrated in a beaker of heated benzene, not in the human body. We do not currently have evidence that this binding occurs in the human brain.

Carey, Matt. "Lupron, Soon to Be a Patented Autism treatment?" Left Brain Right Brain. N.p., 1 June 2012. Web. 17 Oct. 2012

Dr. Paul Kaplowitz, a pediatric endocrinologist, notes that Dr. Geier works with a significantly looser definition of precocious puberty than the generally accepted one and that there have been many treatments that parents and doctors claimed to work but which controlled trials showed to be no better than a placebo.

Cohn, Meredith. "Lupron Therapy for Autism at Center of Embattled Doctor's Case." Baltimore Sun. N.p., 16 June 2011. Web. 18 Oct. 2012.

One parent remains convinced that Lupron will become the standard for "mercury-induced autism."

Cohn, Meredith. "Lupron Therapy for Autism at Center of Embattled Doctor's Case." Baltimore Sun. N.p., 16 June 2011. Web. 18 Oct. 2012.

Notecards Part Three

Some Encyclopedia notecards:

Rimland, Bernard. "Autism." Encyclopedia Americana. 2006 ed. Vol. 2. Danvers, Connecticut: Scholastic Library, 2006. 803. Print.

The 2006 Edition of the Encyclopedia Americana states that psychotherapy has not been found effective in the treatment of autism, but that "a structured, directive approach in which approach in which appropriate responses are rewarded" sometimes shows results and that some B vitamins could be helpful in large doses.

Go find "Infantile Autism" by same author.

 Frith, Uta. "Autism." The MIT Encyclopedia of the Cognitive Sciences. Cambridge, Massachusetts: MIT, 1999. 58-59. Print.

"Contrary to popular belief, failure of bonding or attachment is not a distinguishing characteristic of autism."

Progress is highly variable regardless of treatments, with no known medical treatment and some success with behavior modification therapies.

Notecards from a presentation on camel milk at the Autism One conference. Why camel milk doesn't cure autism to come, along with ripping apart of "we don't know why it works, and we only have anecdotal evidence, but we're presenting it at a conference anyways," which is pretty much what's going on. Those might wait for the paper itself, though.

 Adams, Christina, MFA. "The Benefits and Realities of Camel Milk Therapy for ASD." Autismone.org. Proc. of Autism One/Generation Rescue Conference 2012, The Westin Hotel, Lombard, IL., 30 Apr. 2012. Web. 15 Oct. 2012.

The mechanism is not understood, but possibilities include heavy chain antibodies, enzymes, insulin, proteins, and something that the camels are eating. Essentially, it could be anything.

The reason it is expected to work is that an ASD-immune dysfunction connection is being explored, and that camel milk helps with many inflammatory diseases. In addition, lactose symptoms may not occur with camel milk.

Adams, Christina, MFA. "Got [Camel] Milk?" Autismone.org. Proc. of Autism One/Generation Rescue Conference 2012, The Westin Hotel, Lombard, IL. N.p., 30 Apr. 2012. Web. 15 Oct. 2012.

Supporters include Dr. Reuven Yagil, a camel expert who holds that autism is an autoimmune disease rather than a neurological condition.

My notecards from Talk About Curing Autism's site.

 Trigger Warning: Curing autism, autism being called hopeless/devastating

Have some more notecards!

"About TACA." Talk About Curing Autism (TACA). N.p., n.d. Web. 12 Sept. 2012.

• According to their website, TACA is a national non-profit that aims to help families affected by autism, including by educating families and speeding up the time from diagnosis to treatment. They aim to improve the quality of life for people with autism. 

 

Ackerman, Lisa. "Our Story." Talk About Curing Autism (TACA). N.p., n.d. Web. 12 Sept. 2012. 

•  TACA was founded by the parents of an autistic child approximately 11 years after their son's diagnosis because they felt that a support group for parents with struggles similar to theirs would be helpful. 
• The common message is one of fear. The founders were told that "Autism has no hope, no cure," and institutionalization was recommended. It was in response to this message that they felt the need to form the support group.

 

"About Autism." Talk About Curing Autism (TACA). N.p., 29 Mar. 2012. Web. 12 Sept. 2012. 

• Talk About Curing Autism (TACA) describes autism as a devastating neuological and biological disorder. It lists communication, social skills, behaviors, learning, and medical issues as the five main areas autism affects. 
• TACA says "autism is a life-long disability for many affected individuals." As autism in the way the brain is wired and there is no cure, how are there any individuals for which it is not life-long? More likely, then, is that they consider autistic people who can pass to be no longer autistic, an opinion which ignores the extreme efforts required to pass.
• TACA claims that the one in eighty-eight statistic currently put out by the CDC for the prevalence of Autistic Spectrum Disorders is only for autistic disorder and does not include Aspergers Syndrome, PDD-NOS, or other ASDs.
• Language with negative connotations is commonly used to describe ASDs on the TACA website. Examples include calling autism "devastating" and stating that it "strikes" four times as many boys as girls.
• TACA holds that medical research is urgently needed in order to find a cure for autism, and that recovery is possible.

 That's it for this installation of notecards.

My first installment of NOTECARDS.

 Trigger Warning: Discussion of cures

Two sources today! 

Gernsbacher, Morton Ann. "How to Spot Bias in Research." APS Observer 19.6 (2006): n. pag. APS.  

           Association for Psychological Science, Nov. 2006. Web. 11 Sept. 2012.

1. In one study, the ability of autistic people to better recall which words they had and had not heard was chalked up to representing words “in an aberrant manner,” which seems odd unless you think about the preconceived expectations regarding autistic people. This is an example of study bias, as is the later assumption that the autistic participants in a second study which found no such difference must have also had other impairments.
2. Gernsbacher recommends removing all group labels from a study in order to test for bias. If the interpretations cease to make sense upon removing the labels, then the study is biased.

Chez, Michael, MD. Autologous Cord Blood Stem Cells for Autism. ClinicalTrials.gov. Sutter Health,    

          20 Aug. 2012. Web. 5 Sept. 2012. <http://clinicaltrials.gov/ct2/show/NCT01638819>.

1. The purpose of this study is to "evaluate the efficacy of one infusion of stem cells from autologous umbilical cord blood in patients with autism over six months after infusion as measured by changes in expressive and receptive language." It aims to do so by demonstrating improvements in behavior and learning, along with levels of several serum values. Improvements in behavior and learning will use measures of receptive and expressive one word vocabulary tests and a developmental disorders behavior index.
2. This study uses the banked cord blood of the children participating for the infusions 
3. The sample size is 30 children of mixed genders ranging in age from 2 to 7. They must be diagnosed with autistic disorder, not Aspergers Syndrome or PDD-NOS, and they must not have epilepsy, cerebral palsy, fragile X, muscular dystrophy, or known genetic markers that overlap with autistic spectrum disorders.

Hey, Good Autism Writers (and Autism Parents) Actually Exist!

I don't know if he ever called himself an "Autism Dad." He definitely writes a decent bit about autism for the Huffington Post, and he has an autistic son. And no, he is not autistic. If I remember correctly, the woman who writes Emma's Hope Book also writes for the Huffington Post, and she's awesome too. So we've got TWO, count them, TWO parents of autistic kids writing good articles about autism for the Huffington Post. I'm not entirely sure that talking about the fact that their kids are autistic on the Huffington Post is wise, since, you know, employers use google, but barring that worry, the stuff they write is good. And most of what they write there is not directly about their own kids, but autism in general.
Yes, the point of this post is mostly to say that these are two people who write good articles about autism. (Usually. They do still write some problematic stuff, like the recent letter "from" Emma to her teacher that is on Emma's Hope Book and the fact that they're making it pretty hard for the kid to hide their diagnosis from Google if they wanted to.) It's also to remind me that I should check their articles to see if any of them would make decent sources for my research paper, and I am writing it now because of this article, which might actually make a decent source. I mean, at the least I can quote it as a NT writer who deals with the tragedy  of an autistic son saying that the goal of autism science shouldn't be to prevent or eradicate autism. But seriously. Go read that article now. He talks about how right now, no one seems to know what causes autism, science can't make up it's mind, but all the articles seem to agree on the very problematic concept that autism is a scary thing that needs to be either fixed or prevented. And it is good.
And now to talk about that paper because I need to think about it or I'll not actually get it done...

From these two authors work on the Huffington Post, I think I at least might use the article I linked above, and these others:
The Depiction of Autism and Why it Matters
A Letter to You (Who Wrote 'I Wish I Didn't Have Aspergers')
Autism: Death, Fear, and Hope
Autism 'Awareness'
The Curious Case of Autism and MMS
Supporting Real Autism Science
Can We Do More to Accommodate Autism? 

Oh, and BTW, I am changing to a consistent midnight Eastern time update. If there are two posts in a day, the second could be whenever. But if there is anything new that day, something will come at midnight.

I am writing a paper (about autism, nanotech is soon)

Trigger Warning: Cure discussions

This FDA approved trial thing (details here, here, here, here, and here) has me scared. I admit it. Because they went and APPROVED this trial, and I can see all kinds of problems with it. And yes, I do sciency stuff, but I am an undergrad and autism is not actually my area, not by official education anyways. If I can poke holes in it, there are big holes in it. So I am going to do this official and nice with my i's dotted and my t's crossed and my sources cited and an annotated bibliography. I am going to trace the story of people trying to cure autism, from the useless to the harmful to the abusive to the fatal, pointing out failures in rigor and ethics all along the way, with the endpoint probably being the FDA study unless something else comes out between now and when I finish.
This is going to take a lot of time. I still plan to have this site update daily, but there will probably be an increase in things that are just what I think and not as rigorous, and there will definitely be days where the update is pretty much stolen from my work on this paper. You will be seeing all my note cards, for example. You'll probably also see some first drafts of paragraphs from different sections yanked together as one thing, and the story of my search for sources. The first edition is this post, of course.
And these are the kinds of sources I am looking for:

• Study ethics as related to humans
• Study ethics as related to children
• Study ethics as related to developmental disabilities
• Rigor as related to control groups
• Rigor as related to sample sizes
• What science is behind this thing they’re testing anyways? (Why do they think it will work, any cure attempts)
• Nicely citeable things arguing that a cure can’t/shouldn’t exist
• Nicely citeable things that support the idea that the cure would not actually be voluntary even if it legally was
• Anything on ethics of informed consent relating to children
• Anything on ethics of informed consent relating to people with developmental disabilities
• Anything that supports the thesis that lack of communication should be interpreted as lack of consent in the context of treating a disability that is not fatal
• Anything that is nicely citable and fleshes out “nothing about us without us” as an integral part of all things disability and all things minority.
• Anything written on the subject by an autistic person.
• Special bonus points for being nicely citeable and special bonus points for anything written by an autistic person that fits into any of the above categories.
• Minus infinity points for Simon-Baron Cohen and Autism $peaks sources.

Sources I have so far are:

• The links at the start of this post for details about the study
• Some Thoughts on the Stem Cell Thing
• Why All This Autism Research is Just So Much C*** 
• Writing About Autism and Science? 10 Things to Remember  
• Infantilizing Autism (And probably more from their journal)
• This one will be in a more citeable form- I asked.
• First US stem cell trial for autistic children launches today
• Safety and Efficacy of Stem Cell Therapy in Patients With Autism
• Don't Mourn For Us

Anyone who wants to send me more sources to use or more topics they think I should be looking at is more than welcome to comment on this.