You may have noticed that I missed September and October’s blog as well. That had a couple of causes.
One, the move across country in Japan really had more of an effect than I cared to admit publicly and it is taking me no little time to set up my routines and household in a way that makes life easier. I have a regular store rotation now and some new regular restaurants. I have enough hangers to hang up all my clothes, but still no shelves in my room. I have not, as yet, put furniture in the guest room. I can’t decide if the lack bothers me because it is another thing that needs to be done or if the emptiness of the room is somehow peaceful. For me, it is difficult to concentrate on anything if you are uncertain where to buy your tooth paste or where to put your comb. I am making slow, but steady, progress on the home front and can say that those stressors are settling down.
The the effort required to transition between a small office responsible for one base with a staff of three or four in rural Northern Japan to a larger office that is responsible for two bases and a housing area with many more people – and all this really close to Tokyo – is more massive than one might logically consider. While I love both locations and the move was beneficial both personally and professionally, the fact remains that I am not the best at transitions. Yes, yes, I know. I have lived all over the world and I never seem to settle down anywhere for long. Yes, yes, I know I am creating these transitions myself. But the fact remains that even though I have chosen to travel the world and move across the country; even though every move was a step up and beneficial to my life; even though I love seeing new things . . . my neurology is exactly what it is. I will always get a bit overwhelmed at each change and need some down time to catch up with the changes. I do know from experience that it always works out in the end and all of those awkward things settle into the uniqueness that is my life.
Two, there is so much I want to cover that the concepts get crowded in my head and, like a log jam, once they’re jostling around in there, it inevitably takes some doing to get everything sorted and organized again! I have files on my desktop full of topics I want to cover this year, organized in an order of importance that makes sense to me. For instance, for the last two months I have wanted to write about Autism and Girls/Women. I have facts and articles all lined up, there’s even a half written blog ready to go! However, I have also had a lot of conversations with parents, peers, and coworkers that made it clear that I need to go into more depth on some topics I have already discussed here to clear up some unexpected misconceptions. It is also clear that new topics that I was unaware of have popped up recently. So, perhaps in order to clear the writer’s block, I am addressing these first and then moving on to our regularly scheduled blog topic.
Evidence Based Practice:
In July’s Blog Stimming: Functional Self-Regulation or Inappropriate Behavior, I discussed what constituted “Evidence Based.” This was, in large part, due to some individuals noting that they would not take anything seriously unless it was also linked to peer reviewed research articles, thereby implying that client experiences and professional opinions were not a valid part of the process and would not be taken seriously by these individuals. They took it to such an extreme that I felt they lacked the whole picture. As a result, I found and reported on a model presented by the American Speech-Language Hearing Association.
This article stated that Evidence Based was a triangular concept; that peer reviewed articles (external scientific evidence) were one part of the picture, with clinical expertise/expert opinion comprising another leg, and client/patient/caregiver perspectives comprising the other for a complete picture. After that post, there seemed to be some very positive response from the individuals that were leaning, in my opinion, too heavily on the research side and not allowing for professional or client experience to enrich their pictures.
Later, though, I was approached by individuals who stated that they were glad that I didn’t think that research or peer reviewed scientific articles should be considered in the Evidence Based model. (Oh, wait . . .) That they had some remarkable insight into the ‘real’ causes of autism that were not widely accepted due to lack of research. (Um, that’s not what I meant . . .) Some of them felt compelled to disclose their ‘cures’ for autism. Aaaaaaand . . . I am going to stop it right there.
First and foremost, let me be clear: Just because I believe that the evidence based practice model should include professional expertise and client input, that does not even remotely mean (in any way, shape, fashion, or form) that I think research and peer reviewed scientific articles should be discounted, overlooked, or ignored. It also does not mean that I will accept your outlook because there are no studies available to disprove it . . . yet. Let me further clarify my position on research, because I have a tendency to be misunderstood:
1) I believe that more research into autism is vital. We especially need more autistic people involved in that research on every level. We need to study more than just causes and cures in order to better serve everyone.
2) I believe that all research presented should be evaluated by the standards I was taught in school, including, but not limited to:
- Finding out who funded it.
- Finding out who benefits the most from the results – who has the patents, who has the rights to the resulting technologies, or medicines, or cures. And if they have any relationship with the people funding it.
- Evaluating the methods.
- Evaluating if the outcome seems valid – you know, tease out whether you’re seeing causation or correlation.
- Seeing if other studies found the same results.
3) Make sure the research was done with or in consultation with the population being studied. Please include them. And, when you do, make sure you compensate participants.
4) I believe the voices of people with autism are valid and important to hear. What good is all the research in the world if the population you are trying to help feels invalidated, unheard, and, most importantly, both feels and sometimes tells you directly they have not been helped?
5) I believe that the expertise of professionals is also valuable. These people, in their daily interactions with autistic individuals, have some real vision into what works to make their patients/clients feel more comfortable in their world. Especially those professionals who truly listen to and advocate for the individuals and their families. Those who listen and do not discount the voices of those they are serving, without profitable, specialized programs and one-size-fits-all, “I know everything” sorts of conversations, bring a lot to the table.
I hope this clears up some of the misunderstandings that have been presented to me regarding my beliefs about what constitutes “Evidence Based.”
This month, I would like to speak about something that was mentioned, in a professional setting, that gave me great pause: Autism is caused by Rope Worms and can be cured by “a certain treatment we can’t mention in this setting.”
What are rope worms? Well, evidently, that is a controversial question.
According to believers, “rope worms are a parasite different from other known parasites in that they resemble human feces and intestinal lining.” Rope worms were ‘discovered’ in 2009 by researchers Dr. Gubarev and Dr. Volinsky, who introduced the “parasite” at the International Chronic Disease Conference in 2013. These ‘good doctors’ believe that every human being may be infected with some type of rope worm and have published two reports “Development stages of the “rope” human intestinal parasite” and “Human anaerobic intestinal “rope” parasites”
In the interest of evaluating this research, I think it is important to note some anomalies.
- These articles were not published in a peer reviewed journal, but rather are available online at arxiv.org. which is originally a site for physics, astronomy, mathematics, computer science, nonlinear science, and statistics research. It was not intended to host zoology, medical science, or clinical medicine research.
- The research is not peer reviewed.
- The lead author is a mechanical engineer and none of the authors have credentials that would indicate any level of expertise in the relevant areas of study.
- To date, ‘rope worms’ have never been observed during endoscopy or surgery, during medical bowel cleansing in preparation for surgical or imaging procedures, with x-rays or MRIs, at any autopsy, or by any colorectal specialists.
- One of the authors owns a patent on one of the cures. This means we need to be aware that that author will make money if we believe this ‘study’ and buy the ‘cure.’
- No one writing or editing this blog could locate a Curriculum Vitae or verify the credentials of either Dr. Gubarev or Dr. Volinsky, and we did look for them.
I invite you to read their papers with those facts in mind.
Some opponents of the rope worm ‘discovery,’ from various fields including, biologists gastroenterologists, endoscopists, surgeons, and other general medicine physicians point out the following anomalies in the data presented in the articles:
- That the assertion that the worms are particularly virulent in persons with pH of 10 is not possible because it is not biologically possible for humans to survive with a blood pH of 10.
- That when the DNA of the proposed worms was tested only human DNA was found, suggesting that it is not, in fact, a worm; it is the lining of the intestines that is being shed after harsh remedies.
But…Sophia what do you mean by ‘harsh remedies’?
The most popular remedy is Chlorine Dioxide (CD), which is used in water purification (1 drop per 1 liter), to bleach wood pulp, and to disinfect swimming pools. Put simply, readers, CD is bleach. It is most commonly marketed as Miracle Mineral Solution (MMS). It is recommended to work up to 40 drops in 8 oz of water as often as hourly, until you see the ‘worms’ being shed, to be continued until such a time as you stop seeing these ‘worms’. With a recommendation to begin treatment again if symptoms persist, because the nature of worms is that they are hard to get rid of and often need many courses of treatment. (May I remind you that many in the medical field believe these ‘worms’ are the lining of your intestines?)
No medical doctors are advocating treatments for these so-called ‘worms.’ I did, however, find several websites that speak out against using harsh chemicals for four reasons.
First, using harsh chemicals designed for industrial water purification outside the advice of your medical doctor can have (and has had) some very dire consequences up to and including death. Chlorine Dioxide is bleach, it is toxic, and it is dangerous.
Second, rope worms have not been proven to exist.
Third, the reason ‘we can’t speak about certain treatments in this setting’ is that in many places it is considered abuse, punishable in court, to feed someone bleach; and, some of the cites that advocate the use of MMS also advise those purchasing it to be careful who they tell they are using it in case there is an investigation of abuse.
Fourth, autism is a neurological difference, not a disease.
There is no cure for autism, let me be clear about my stance here . . . there is no cure for autism.
Is it possible to help reduce the stress and resulting distress of a person on the spectrum by helping them find a diet that makes them feel better? Perhaps.
Is it possible to relieve the pain from muscle spasms with different kinds of massages? Very likely.
Is it possible to help them by reducing the stressors in their environment? Yes.
Are there a whole host of things that can be done to make the life of a person with autism better and reduce the resulting issues that are seen and felt? Yes.
Can you cure autism with diet, or bleach, or massage? No. I am sorry, but no.
Please visit the following links for more information on how rope worm cures are, at best, psudo-science and at worst highly dangerous.
- Emma Dalmayne has several videos on Youtube videos she has posted about her educational talks in London. https://youtu.be/5hKfMWKB45k is one, and do look at some of her others. She also has a blog you’ll find at autisticate.com
- Rope Worms: C’est la Merde https://sciencebasedmedicine.org/rope-worms-cest-la-merde/
- MMS: Miracle Mineral Scam https://www.exposingtruth.com/mms-miracle-mineral-scam/
- What are the side effects of miracle mineral supplement? https://www.livestrong.com/article/507956-what-are-the-side-effects-of-miracle-mineral-supplement/
Many of the articles you will find when looking up MMS on google will be government advisories and other public health and safety sites strongly suggesting NOT to use them.
Please, don’t take my word for it – do the search.