Indigo Jo's other blog

The WPI are an institute set up at the University of Nevada, Reno, to research into "neuro-immune diseases". The best-known of these is ME, but they also include fibromyalgia, atypical MS, Gulf War Syndrome and ... autism. Yes, autism, which most of those affected who can speak for themselves would say was not a disease.

The WPI put out a video last week, a fund-raising appeal video in which Dr Donnica Moore of said institute said that these conditions could have "debilitating, lifelong consequences for those who suffer from them and those who love them". Autism does not affect people in the same way as any of the other conditions mentioned; it is not inherently a physical illness manifesting in pain, extreme fatigue and sickness and so on. It is a cognitive developmental disorder.

What are the WPI hoping to achieve by this? The ME community in particular puts a great deal of faith in them, as their illness suffers from a serious dearth of high-quality research, which has not been the case with autism. They also risk taking sides in the dispute between autistic self-advocates and major charities, which emphasise the "need for a cure" by portraying autism as a fate worse than death (or severe ME).

Perhaps the purpose is to have a side-line in a well-acknowledged condition so as to avoid being seen as "purely" an ME/fibro research centre, but their background is known to be in ME; they are located in a region known for its association with ME (the Lake Tahoe outbreak in the mid-1980s) and where the illness is taken more seriously than in much of the rest of the world, and was founded by people with a professional or family background in ME, and people with autism are in more need of educational and vocational support, while those who are sick with ME need biomedical research so that effective treatments, or a cure, can be found sooner rather than later.

The doctor half of the father-son autism therapy practice, Dr Mark Geier, has had his licence to practise suspended by the Maryland Board of Physicians (he still has a licence in 10 other states, however) after prescribing lupron, a potent anti-androgen drug, to autistic people as part of his theory that testosterone increases the toxicity of mercury. This article explains how Katherine Seidel, the author of the Neurodiversity Weblog and mother of a son with Asperger's syndrome, investigated and posted a "16-part takedown", while others (but not her) contacted the physicians' board.

The article alludes to lupron being used in the treatment of sex offenders; in fact, it's mostly used to treat prostate cancer as part of a combined therapy with cyproterone acetate (Androcur, most commonly sold these days as Siterone). The reason is that lupron produces a "testosterone surge" which can exacerbate testosterone-dependent cancers, while Androcur doesn't. They both have significant unpleasant side effects including gynaecomastia (that's men growing boobs). Depo Provera, the drug which is actually used on sex offenders, reduces male libido without causing these kinds of effects (although some women complain that it reduces their libido as well when used as a contraceptive).

The reason I mention all this is that various different justifications are used for prescribing anti-androgens to both male and female autistics; some are diagnosed with precocious puberty, some are claimed to be aggressive (sometimes sexually so), but the main reason seems to be the one about mercury, although some parents have said that their children have been on lupron for some time, yet the mercury is not being eliminated in their urine. I've heard it said that anti-androgens have been prescribed to control inappropriate sexual behaviour in people with autism, but lupron is completely the wrong drug to use, particularly as it is hugely expensive, costing hundreds of pounds or dollars for a single shot. Clearly the Geiers thought that an expensive drug would give a false impression of good quality.