NTs Are Weird

I’m worried for my people. We, as autistic people, are receiving “medical” treatments that are untested. We’re receiving “medical” treatments known to be dangerous. We’re being experimented on by people “looking for hope.” We’re being pumped full of drugs (or “supplements”) that we neither need nor which are beneficial for us – all this not because it is known to help us, but rather because some are so desperate to see their loved one “free” of autism that they will try anything – much like a cancer patient who goes to Mexico to escape the “oppression” of most other countries’ medical regulatory boards (I’ll note that many Mexican clinics use chelation for “curing cancer”).

Other times, we receive psychiatric medicine that is inappropriate for us, because our differences are disconcerting or “more work” for others. Some of us are given sleep aids to make us “more manageable” while others are given powerful psychiatric drugs to “calm” us down.

Yet other times, we have legitimate medical complaints, only to find no doctor is willing to look past our autism and treat the real issues. Many of us have lived years in pain that could be treated. Others die for want of basic medical attention that is readily available to most people (but not necessarily autistic people). I’ve written about my experiences with doctors many times – health care is often inaccessible to us.

There is a genuine need for good medical care for autistic people.

But I’m writing about something today based on some worrying things I’ve read lately online.

I saw selenium recommended for a child that recently had a tetanus shot, because the tetanus shot contained a preservative designed to prevent a bacterial infection (thimerosal, which is a form of mercury – which is safe in this application, but wrongly implicated in the minds of some as causing autism). There’s a problem, though. Selenium is classified as a hazardous substance by the US Center for Disease Control (CDC). While it is true that small amounts (very small – measured in MICRO grams, not MILLI grams – a microgram is 1/1000 of a milligram) are required for human health, most people get two to three times the minimum amount required by simply living and eating – the amount needed is miniscule. For an adult, the maximum tolerable intake level – the upper limit at which bad health effects are not expected to occur – is 400 micrograms. 1-3 year old children have a maximum tolerable intake level of 90 micrograms. Yet, searching online, selenium supplements are supplied in milligrams – not micrograms – and even one milligram is above the tolerable intake level for an adult. I saw supplements that claim to have between 125 and 200 milligrams of selenium (the 125 milligram amount was recommended for children weighing 30 pounds) offered to help excrete metals. I truly hope these supplements are not what they claim, as exceeding the maximum tolerable intake level by over a thousand times does not sound wise to me. Of course it’s possible that people are confusing the symbols for micrograms and milligrams, and I hope that’s the case. However, even if that is the case, it’s almost certain that the addition of one dosage of these supplements would cause exceeding the maximum tolerable intake level for selenium. Some of the effects of excess selenium exposure do sound somewhat familiar – they are often the things that mercury causation theorists (who often use selenium) talk about being associated with mercury. Short term effects, from the CDC’s website, are “nausea, vomiting, and diarrhea. Chronic oral exposure to high concentrations of selenium compounds can produce a disease called selenosis. The major signs of selenosis are hair loss, nail brittleness, and neurological abnormalities (such as numbness and other odd sensations in the extremities).”

Another therapy I saw recommended was the use of epsom salt soaking instead of proper medical treatment for a dirt-infected wound (proper medical treatment may include a tetanus shot which will “make autism worse” according to some). Epsom salt is not anti-bacterial and non-sterile (it’s not supposed to be put in open wounds!). An infection can cause tetanus (hence the reason for the tetanus shot!). It can result in the loss of a limb or even death. It’s a very serious medical condition indeed – I would not listen to anyone that says that an infected wound should not be treated with modern medicine, even if they thought vaccines are the cause of autism.

While not a specific “cure” or “therapy”, I saw a lot of reference to behavior changes when trying “alternative” treatments for autism. Basically, the idea is that behavior is expected to become worse in autistic people who are “detoxifying” or ridding their bodies of demons (oh! Bad Joel! I didn’t mean to say that!) or whatever. As the “toxins” are leaving the body, apparently the body “fights back” and the result is a very upset autistic person. While this may sound plausible, it is not backed by science. It is also not backed by my experience as an autistic person. When I become “more autistic,” it usually indicates something is really, really wrong. I might be in extreme pain. I might be sick. I might be malnourished. I might be very, very stressed. None of these things are good, nor are they the sign of something good happening. In people who are not fully able to clearly express themselves about how they feel, a change in behavior may be the only sign that there is a serious medical condition. It might even indicate a need for emergency treatment! It certainly is worth investigating to see if there is a cause, related or unrelated to the treatment.

Of course this is just the start of the things I see that really scare me. It’s one thing to have an intellectual theory that is different than mainstream science. It’s quite another when potentially dangerous treatment is used on autistic people.