Sunday, 18 February 2018

Online Autism Communities

I am often surprised what counts as academic research these days, but I stumbled upon one such paper that I thought might be of general interest.
It is a study from 2017 of the 550,000 comments left on two popular forums, and Both of these forums have since closed down.

A large number of patients discuss treatments in online health communities (OHCs). One research question of interest to health researchers is whether treatments being discussed in OHCs are eventually used by community members in their real lives. In this paper, we rely on machine learning methods to automatically identify attributions of mentions of treatments from an online autism community. The context of our work is online autism communities, where parents exchange support for the care of their children with autism spectrum disorder. Our methods are able to distinguish discussions of treatments that are associated with patients, caregivers, and others, as well as identify whether a treatment is actually taken. We investigate treatments that are not just discussed but also used by patients according to two types of content analysis, cross-sectional and longitudinal. The treatments identified through our content analysis help create a catalogue of real-world treatments. This study results lay the foundation for future research to compare real-world drug usage with established clinical guidelines.

Top 10 treatment by number of users, identified in the ASD data set:-

Number of users

speech therapy
early intervention
special education

The most important building block of future work following this study is to compare the list of treatments discovered in OHCs automatically by the computational tool with established clinical guidelines. For example, while effectiveness of chelation is still under investigation by researchers, it already becomes a rather popular choice among autism community members. It is therefore critical to further quantify how broad the gap is between established guideline and patients’ actual practice. The future work will contribute to understanding how information support and consumption in OHC affect members’ decision makings regarding disease management, and hence how OHC participation makes physical and psychological impact.

I think what is happening is these kind of discussions have moved to other channels like Facebook and also that discussions are going on in closed groups, rather than in public.
Online communities for very rare, but well defined, disorders seem like a great idea and allow people to connect with others facing the same challenges.
This blog is public and so all kinds of people read it, some of whom would never join a closed group. Most readers are parents who come via Google or Facebook, some are regular readers, some are doctors, but there are researchers and even drug producers. Readership is very much skewed to North America. Australia and Eastern Europe are over-represented while the United Kingdom is slightly under-represented. There are almost no readers from Germany and Austria (the original home of autism and Asperger’s), but a fair number from France and not only Bumetanide researchers

The experimental approach put forward here is unorthodox and I know that some researcher readers do not entirely approve, but it is the end result that matters. 
I think the fact that some researchers are aware that lay people are reading about their research, and some are even applying it, is a good thing.
The online communities tend to be discussing supplements and the protocols of alternative doctors. This blog is looking at science and, based on that, seeing what drugs might be therapeutic; this narrows the potential audience somewhat because things do get rather complicated. 
I do not know if anyone has analysed all the comments in this blog, if they did they would see that a small but growing number of people have impressive long term results from repurposing some safe old generic drugs.  Because most people want to be anonymous, these comments do not carry the weight of case reports published in journals, but I think they can still be very useful.
I think only a small proportion of readers actually get access to the novel therapies indicated by the research, it all depends on where you live. Living in a Latin country, or being a doctor clearly helps.


  1. The autismweb and other similar communities have died out for many of the same reasons other "forum" cultures have died out. Many people like to exclusively blame Facebook, however unless you have been around various forums long enough you won't realize they have a natural life cycle to them that kind of goes like this:

    (1) Something new, interesting, or important (such as autism awareness) pops up and someone takes the liberty to create an online meeting space.

    (2) People join the online meeting space and usually there is free and open discussion until it gets popular and starts attracting spammers and trolls. This is why moderation is usually a good idea from the get go to detract from the inevitable hyperbolic calls of unfairness and censorship that follow when you institute moderation later on.

    (3) Lurkers will stay lurkers and never post if they have any psychological barrier to entry, no matter how mild so censorship has the benefit of keeping out trolls and spammers but also prevents lurkers from posting.

    (4) The lurkers who do eventually start posting will inevitably face "new kid on the block" syndrome at some point unless the person running the site is fair and not afraid to punish regulars who bully any newcomers for making sincere controversial statements.

    (5) Other lurkers see this happening and move on because conflict is disturbing and distracting. This is why one of the best ways to sink a movie or TV series now in the United States is to make political comments one way or the other because people do not want to associate their entertainment with the annoyances of politics.

    (6) Due to the reasons mentioned above, the forum becomes insular and also because they are usually run by benevolent dictators, there is no path for younger or newer members to be involved in leadership that does not involve sucking up the the benevolent dictator. Strong institutions have ways of dealing with these kind of problems, just as the ancient Athenians did with banishment of anyone thought to be a demagogue.

    (7) Over time the forum becomes dull and stale due to the lack of new ideas from a lack of new blood to the forum. People lose interest and the benevolent dictator realizes nobody cares about the forum that much anymore. The benevolent dictator may ask for for donations that never transpire and then eventually the forum is shut down. Wikipedia has that problem right now and though I don't think it will shut down anytime soon, it has long been pretty stale and lacking momentum just like some of the autism forums, not to mention some of the autism awareness umbrella groups that had a lot of headwind around a decade ago when the rate of autism diagnosis seemed to be climbing exponentially. The increase in autism diagnosis seems to have leveled off now, so these organizations are having some problems now, especially with all the political infighting inside them and between them.

  2. To the best of my knowledge since the internet became mainstream, no forum culture has ever been able to get around these kind of organizational problems that allow for upward mobility of those who want to put in the work and make a difference and for recognition of those who actually do make a difference. This requires the organization to regularly "retire" its leadership with term limits. Organizations like the masons have this leadership from "master" (leader) is retired after one year to being a "past master" and then you are not supposed to be in that role ever again and they have endured for a very long time even though their numbers have dwindled considerably in the last several decades due to changing demographic and lifestyle factors here in the United States (for instance people work a lot more and spend more time with their kids which means less time for civic involvement).

    These are all big questions for those looking for answers to all of the science being done now as it relates to autism and the dearth of serious translational research which is really what most parents are looking for which is frustrating for everyone, especially those who have not gone through all the labors of figuring out that all of the advice they are getting from their doctor after their first autism diagnosis in the family is usually terrible and useless advice. It is no wonder so people turn to quack therapies when the mainstream medical establishment has failed them so convincingly.

    Hopefully some big gains come soon in translational research because Autism Speaks appears to be about to implode judging by the lack of activity on their website and Jim Simons is now mostly focused on his mega math science lab in New York City. Now to be clear I think his idea of combing over existing research with AI algorithms for new science discoveries is a great idea, but he does not have a lot of years left at his age and one has to question what will happen to SFARI when there is no more adult supervision in the organization and it is left to its own devices (usually not good for any foundation though there are exceptions like HHMI).

    1. Tyler, this blog may not be typical, but one or two times a week 300+ people will come en masse via Facebook to read an old post. With Twitter there might be 10 visits, and from the handful of forums read by Asperger's people 2 or 3 visits. Autismweb was also the odd 2 or 3 visits. Facebook is currently the "big thing", like it or not.

      Social media is often extremely superficial, but if everyone reading has a daughter with Retts Syndrome, for example, they have a lot in common and what helps one child is quite likely to help another. When nobody knows what is dysfunctional in their child, the situation is quite different and superficial discussion is unlikely to take you anywhere.

      Social media is the modern space for gossip, which is why people love it.

    2. I had no idea you had so much traffic from people linking on Facebook. In 20/20 hindsight I am not surprised as that is where my wife gets 95% of her autism information. She could just get it from me, but then she would have to stop phubbing me as she reads whatever she is reading on facebook at the time.

      The younger generation (those behind the millennials) who will no doubt be parents of plenty of children with autism are avoiding Facebook like it is the plague these days. Maybe they are smarter or savvier than their elders or maybe it is something else. Either way it will be interesting to see if forum culture reinvents itself among this generation as it did among Generation X and we see some fresh enthusiasm for groups of people tackling the myriad of issues autism presents to those that live with the condition and those who care for them.

    3. Tyler, the other reason why people drift away from autism forums is that they really want cures, for their child to “recover”. After a few years of trying everything, they give up and accept their situation.

      You almost never read about people using the same therapy for several years. Many things can have a minor effect, but in the end people decide they are not worth the bother and expense.

      Is raising oxytocin worth the bother? It makes for cute emotional moments, but it is no cure for autism.

      I continue with this blog because, for some people, Bumetanide really does work and if you see this kind of profound change you would keep participating in your autism forum forever.

  3. An off-topic comment just to share this recipe for making yogurt using crushed Biogaia Gastrus tablets:

    I have not yet tried this recipe. Inulin powder is sold under the name 'Benefibre' and our Costco has it in the pharma section.

    1. Thanks for the post whoever you are. I tried this myself on my own and gave up and now just boil milk, cool it, then ferment it for a day with one tablet. Then to make the fermented milk more palatable I add sucralose and unsweetened cocoa. After a day of fermenting I will add in inulin and other types of fiber (potato starch and barley flour) for the final preparation, but never thought to use inulin in the fermentation process I'm the first place.

  4. Valentina, I appreciate reading your questions and hope your son is doing well. I am sure you are not surprised by this:

    Since late adolescence things have changed a bit for my son, but we have had luck lately using treatments that work for bipolar and anxiety. I hope you keep sharing here what is helping your son. I look forward to reading your reports.

    1. Tanya, thanks for writing to me,I appreciate what you say.Sometimes I ask here and ask myself questions that don´t have an easy answear. Other times, comments that are important for oneself are lost in older posts with no response.That is how this works.My son is pre adolescent, I also learn a lot about what happens to yours.Now he is fine again. His English teacher is surprised about his progress, how he is saying complete sentences using complex verbs,beyond de course level.The same told me his maths teacher, he is beginning to do abstract thinking for the operations.That said, even he has almost no stims, I continue struggling against anxiety and hyperexcitability.The issue with dopamine is a great topic to me,always say,Tayler helped me a lot with this, but the more I read about dopamine, the more confused I get.After the last trials,one thing is sure,will never give anyting that increases directly dopamine levels.Neither verapamil was a good experience. I am thinking about trying Bacopa, did you try it? Lithium orotate was something that really helped but now with bumetanide I suspended. What are you using for him? Thank you for the very revealing link!

    2. Another question for you Valentina - I remember the replies to you from Tyler on using the branched chain aminos and I was wondering if you still give those to your son? That is another intervention I will consider transitioning to once the medicines are weaned - even though in the past I did give goat’s whey regularly - and he was still exhibiting manic nights of poor sleep and hyper agitation. It could have been though another amino like tyrosine or phenylalanine was clouding the benefit from the branched chain aminos in the whey? I have read that verspamil plus magnesium oxide was used in a small study to treat mania - so I’m confused about my son’s experience with it. Perhaps now with a better understanding (in other words, more accurate diagnosis) of what we are dealing with, there could be a place for it in an overall protocol to cover all the bases. Yes you are right - the dopamine issue is complicated

    3. Tanya, Iam sorry about what happened with your son, but the fact that you can have a diagnosis, sure will help a lot with the best interventions for him, and will see that you will be able to keep him under control.About BCAAs, yes they are my best intervention with bumetanide, also with citrulline, lysine and glucosamine. I will up the dose of glucosamine. Regarding BCAAs, the rate must be 2 1 1.Of course phenilalanine and tyrosine, as dapomine precursors,sure played against.Take only BCAAs.I will not add bacopa, neither something similar,from what I can see, they are all double edged weapons for my son.The same happens with quercetin, rutin and luteolin. My son has moments of obsessions and certain manias and perseverations with the same themes and behaviors,but always up.You can try bacopa later, being careful in the process of weaning of medications and choose your next interventions.May be you could return to verapamil when he is stabilized.I don´t know what he is taking now but as an example, my son was on valproate for many years and it was a life saver, at least at first. He doesn´t take it any more but if you see that it changes your son´s situation for the better I would give him more time taking it.All best.

  5. Valentina, I’m glad to hear he is doing well now and the good reports from the teacher. That is excellent news! Last fall my son had a really intense bout of mania and he ended up in the hospital - he is being helped greatly by the prescription form of lithium , even with a dose lower than the typical dose used for bipolar. He is temporarily on medicines and in the next few weeks we will begin to wean. I am hoping the orotate form of lithium will be just as effective. We had to stop verapamil too last year after 6 months. I have not tried bacopa - I think it boosts dopamine so it might be a little helpful if I see depressive states in him but right now we are just sticking to medicine regimen and being extremely cautious. The mania was a very scary experience for us. I have learned so much from bipolar studies now I am wondering if what I thought I was seeing as PANDAS was bipolar (especially since none years of the treatments for pandas ever made a difference). I wish we could try bumetanide under doctor supervision by my son has sulfa allergy.

  6. I find it scary and disturbing that chelation is the third most popular treatment listed here.

  7. Hi everyone,

    For those with 16p11.2 microdeletion (or even mutations specifically in TAOK2), the following paper indicates that gene dosage impairment relating to TAOK2 is working through a reduction in RhoA activity:

    Altered TAOK2 activity causes autism-related neurodevelopmental and cognitive abnormalities through RhoA signaling

    Atypical brain connectivity is a major contributor to the pathophysiology of neurodevelopmental disorders (NDDs) including autism spectrum disorders (ASDs). TAOK2 is one of several genes in the 16p11.2 microdeletion region, but whether it contributes to NDDs is unknown. We performed behavioral analysis on Taok2 heterozygous (Het) and knockout (KO) mice and found gene dosage-dependent impairments in cognition, anxiety, and social interaction. Taok2 Het and KO mice also have dosage-dependent abnormalities in brain size and neural connectivity in multiple regions, deficits in cortical layering, dendrite and synapse formation, and reduced excitatory neurotransmission. Whole-genome and -exome sequencing of ASD families identified three de novo mutations in TAOK2 and functional analysis in mice and human cells revealed that all the mutations impair protein stability, but they differentially impact kinase activity, dendrite growth, and spine/synapse development. Mechanistically, loss of Taok2 activity causes a reduction in RhoA activation, and pharmacological enhancement of RhoA activity rescues synaptic phenotypes. Together, these data provide evidence that TAOK2 is a neurodevelopmental disorder risk gene and identify RhoA signaling as a mediator of TAOK2-dependent synaptic development.


    Hope this is helpful!



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