Autism Speaks: Will they ever learn?

The caffinated autistic updated their post from December 2015 regarding Autism Speaks to make sure the data was updated. There isn’t any improvement in their ability to actually be there for the people they claim to represent. Links to the information are found on The caffinated autistic’s blog. Autism Speaks do not cease disappointing.

Update 4/4/17 – as of December 2015, Autism Speaks now has two autistic board members, Dr. Stephen Shore and Dr. Valarie Paradiz.   In addition, their mission statement no longer includes the word “cure” .  You can read more specifics here. 

When a person thinks of the term “Autism Awareness” in the United States, it’s usually one organization that comes to mind – Autism Speaks.  It is heralded by celebrities, politicians, nonprofit and for profit organizations alike. Many parents of autistic children enthusiastically applaud their “efforts”, even partaking in fundraising, despite not knowing much about what those efforts entail.

Ask an autistic person, however, and you might get quite a different picture of Autism Speaks.

The number one tenet of any activism among disability groups is “Nothing About Us Without Us”, yet Autism Speaks can’t even manage to meet this one basic qualification.  They have never had an autistic member on their board.  Their current board consists of parents, including one who founded SafeMinds, which has contributed to the anti vaccination movement, as well as another board member who used be a board member for Cure Autism Now. To view the full list, click here. To view a list of other leadership in their organization, click here.

The only autistic person high enough up in their leadership to be worth mentioning was John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s Syndrome and part of their science advisory board.  He resigned his position in November 2013, a decision he spoke about on his blog.

Autism Speaks spends just 3% of the money they raise back into helping families and autistic people.  This comes in various forms, and not all of it is aimed at actually helping autistic people.  Some of it is aimed at communication devices for autistic children and teenagers, and this is of course a very good thing.  Much of it is also aimed at providing ABA therapy for autistic people, which is a behavioral intervention that much of the autism community opposes, particularly autistic people who are now adults who were subjected to it as children.  Some accounts of this are here, here, here and here……………..

The rest of the article is on The caffinated autistic


Third thoughts

Source: Longwood, 2016

“We are good at being skeptical when information conflicts with our preexisting beliefs and values,” Landrum noted. “We are bad at being skeptical when information is compatible with our preexisting beliefs and values.” (Scientific American)

Evolution works with what is available in any given species at any given time. Even if a mutation is highly desirable, it is useless unless it gets passed on to new generations. Once upon a time, enough members of human ancestors broke with tradition and started walking on two legs. Environmental circumstances at that time made this mutation ideal for survival and breeding. Becoming bipedal necessitated other mutations in our bodies, including the brain, and many of the mutations have been passed on to us.

Confirmation bias is not necessarily a bad mutation when seen in light of  survival. Conscious thinking takes time, enough time that a lion might eat us or we might become exiled from our group because we begin questioning accepted truths. Automatic thinking, on the other hand, helps us make instant decisions that could save our lives. Even researchers have to use confirmation bias by presuming that their samples are randomized and representative enough for a much larger population. However, confirmation bias gets in the way when the information we need goes against what we have been taught and how we have learned. According to Miguel de Unamuno (1924)

“The skeptic does not mean him who doubts, but him who investigates or researches, as opposed to him who asserts and thinks that he has found. The one is the man who studies the problem and the other is the man who gives us a formula, correct or incorrect, as the solution of it.” (Todayinsci)

Many times confirmation bias among the general public and most scientists has stood in the way of progress. Researchers are not innoculated against confirmation bias.Take the old ideology of the West that claimed that the Sun circled the Earth. Galileo was severely punished for claiming that the Earth was NOT the center of the Universe and that it circled the Sun. Alfred Wegner was ridiculed by other scientists for his theories about continental drift. In 1972 John Yudkin warned people about the potential dangers of refined sugar, and his theory destroyed his reputation. Not until well after his death in 1995 did scientists begin research on the potential problems of refined sugar. Even people who study the way we think fall prey to inefficient confirmation bias against other psychologists. It took some time before B.F. Skinner’s theories about learning became accepted. Even now many psychologists struggle with the idea that Skinner claimed he could predict how any of us would react to a stimulus based on previous reactions to the same types of stimuli.

Once we start thinking that there could be something to what another person says or does, or we begin doubting that our culture is an optimal one, we might need to change our behaviour and risk losing social standing. Yet, by doing so, we could end up with a positive effect on ourselves and our lives. One of computer science’s starting points was in the 1840’s with Charles Babbage and Ada Lovelace. We should be impressed with their genius at a time when steam engines were what was available.

Neither of them, in their wildest imaginings, foresaw the possibilities of today. Not many decades in the past specialists in the field had become too comfortable in their paradigms. History of computers on the ICT Lounge has some fun information that shows how amazing and exponential developments in computer science have been.

Just as some of our ancestors decided they could stand up and walk on their hind legs, we too can ask ourselves if there might be something to what our “opponents” argue. Sometimes there is and sometimes there isn’t. Studying other points of view made my life better and taught me a valuable lesson. One that I still struggle to keep in mind, i.e. that my understanding of the world probably isn’t the ideal one.

Or, in the words of Matthew Inman, The Oatmeal:

Fear is highly irrational

Over on the silent wave, Liana makes a plea not to demonise autism. Get to know us. What makes us different is nothing to fear. Look, I am surrounded by non-autistic people, and while I might never understand their way of seeing the world, I see no reason to be afraid of them, or their […]

via Autism is nothing to fear — Another Spectrum

Demonizing autism brings in money from parents and loved ones who want to “cure” this terrible “disease”. Fear is a commodity in this world. People and institutions push that fear until rational behavior disappears and witch-hunts begin. The US has been at a tipping point for a long time. Autists are not the only “different” people who become sales pitches for callous institutions and individuals. There is a reason someone invented the “bleach-cure” for autism. Concern about parents or autistic children had nothing to do with it.

It’s OK to think of us as people. It’s more likely that you will destroy me than that I will destroy you.


Why we think and behave as we do

There are many theories about why we think and behave as we do. Be they as they may, but the real reason we do what we do, say what we say, and think what we think, lies here:


Maps of the world: all about the distribution of power

Maps fascinate me. On I wrote a post about the various maps I have in my office.

When it comes to maps of the world, I find them to be all about the distribution of power. Power to define who and what goes where on pieces of paper is something people regularly kill other people for. Vivid Maps just posted a picture of the map below. European thinking on who lives where is behind this map that supposedly shows The Distribution of the Human Race.

Drawn by John Emslie



Asperger’s Syndrome Bingo


The lives we kill

“The human race is just a chemical scum on a moderate-sized planet, orbiting around a very average star in the outer suburb of one among a hundred billion galaxies. We are so insignificant that I can’t believe the whole universe exists for our benefit. That would be like saying that you would disappear if I closed my eyes.” (Stephen Hawking from an interview with Ken Campbell on the 1995 show “Reality on the Rocks: Beyond Our Ken”)

Brainwashing is something that happens to all of us. Often we are brainwashed to the point of blindness. Letting go is immensely difficult. My religious beliefs, cultural beliefs and common-sense beliefs have all needed pruning. In the Mormon church members are taught that humans may one day become as gods, creating worlds of our own. Culture taught me that humans have a Right to nature. From common-sense lessons, I learned that humans were much more intelligent and complex than other living creatures. One after the other, these flawed and dangerous beliefs have been revised.

Letting go of the idea of my own importance was intimidating at first. I had to defy the advice of Mormon leaders to NOT seek outside sources. Ready access to information on the net made that possible for me. Today information is accessible to a degree I can barely comprehend. Some of it is garbage, but much information on the net is verifiable and valid. Learning Truth has been amazing, beautiful, freeing and mind-opening.

Now. Now I believe that I have no more or less right to exist than any other living creature. By life, I mean any collection of atoms that enables a creature to consume another. Everything from single-celled life to the collection of cells, bacteria and fungi that make up my body. My cells are no more significant than other cells that exist. Except to me, that is, and a very small circle of family and friends. Understanding that plants have their own form of communication and discoveries about other animals‘ helped me realize that intelligence, as humans define it, isn’t a valid definition for all life-forms. After all, we humans seem to happily destroys vital life-sources for short-term gains, and that seems pretty stupid to me.

Right now, in North Dakota, the US Government is deciding whether it will break another treaty with Native Americans. The Dakota Access Pipeline will trek across vital food and water sources. We shall see how corrupt the judge making the decision is. Wars (conflicts) about water are likely to become more common as clean water becomes scarcer. At times it feels as though the only reason countries, organizations or communities go war is short-term gain, yet long-term consequences for current life may be dire. Western culture pollutes to an unprecedented degree. Air-pollutants, water-pollutants, land-pollutants and light-pollutants are all a symbol of our consumer-addicted economies. Humans are committing species’ suicide and ecological murder. Most of us probably don’t even care. Empathy for future generations and other life-forms is sadly lacking in our evolutionary development. In more than one way, Hawking’s description of humans as self-important “chemical scum” seems fitting.


Malawi: Trinitas Mhango-Kunashe changes women’s lives

Equality matters. Unwritten sanctions against people who speak openly about bodily functions, especially female body functions, seem to exist everywhere. Menstruation is one of these topics. Sanctions against menstruating women are many. Young girls still get their first monthly bleeding without knowing what is happening. We are expected to hide the fact that we menstruate and must make as little fuss as possible. Menstrual products (reuseable pads, disposable pad, cups, tampons, ets.) are expensive. In many countries there is no access to menstrual products. Women must use rags that leak and are forbidden, by unwritten rules, to wash and hang their rags where they can be seen. Girls stay home from school because they bleed through their rags or there is no access to a toilet. Both genders enforce this form of discrimination and body-shaming. However, some women (and men) take steps to make life better for menstruating women. Especially poor countries struggle with access to menstrual products. Malawi is a place where a month’s supply of disposable pads may cost up to two days salary.  Trinitas Mhango-Kunashe’s reuseable pads can make a huge difference in the lives of women.

Easing the menstrual woes

Brenda Twea | May 22, 2016

Menstruation is a normal biological process and a key sign of reproductive health. It is the natural monthly occurrence in healthy adolescent girls and pre-menopausal adult women. The onset can occur anytime between the ages of eight and 16, resulting in about 3 000 days of menstruation in an average woman’s lifetime.

In addition to persisting taboos, women and girls’ capacity to manage their periods is affected by a number of other factors, including limited access to affordable and hygienic sanitary materials and disposal options leaving many to manage their periods in ineffective, uncomfortable and unhygienic ways.

Very often, women and girls miss school and productive work days and fall behind their male counterparts, because of practical needs such as water and space for washing and cleaning the body, material for absorbing menstrual blood and facilities for proper disposal of used materials.

Example of Ms. Mhango-Kunashe’s reuseable menstrual pads. Credit MW Nation€€

Menstrual hygiene and management can be essential in ensuring that one’s everyday life is not interrupted by menstruation. A College of Medicine research scientist and project coordinator for Global Early Adolescent Study, Trinitas Mhango-Kunashe is producing reusable sanitary pads.

“I sew reusable, washable sanitary pads made out of cloth. They can last for two years. This is a low cost alternative, a once off purchase which a girl could use for 24 times or more,” says Kunashe.

Tinapads, as they are called, are made of three types of fabric; flannel, toweling and water proof material. The pattern has wings which are snapped with press buttons to wrap it properly and comfortably on the underwear. “This will ensure that a girl stays in school all year round. If she is absent then menstruation management problem will not be the reason for her absenteeism,” she says.

Kunashe adds that she came up with this innovation after noting that girls usually stay home from school for days due to lack of proper and dignified sanitary materials. She notes that this affects their class work, and translates into poor performances and rises in school dropout rates.

“Our objectives are to reduce absenteeism rates caused by lack of sanitary products, keep girls in school, motivate them to stay in school, break the silence around menstruation and expose girls to Sexual and Reproductive Health Rights (SRHR) because our distribution will go along with three sessions on body development, body feelings and changes and how to cope with that,” she says.

Kunashe says it will be a pack of nine sanitary pads, down from the initial 10. The number was reduced in order to bring down the cost.

“In the pack of nine, three will be used on day one, three on day two; and two on day three and the remaining one on day four. The target is for the pads to be used once a month so that when they are washed, they should not be used again until the following month. As such, they will last longer. …”

The rest of the article may be read at The Nation


“Funny Numbers” with Robert Osserman, Steve Martin and Robin Williams

A goal of The Mathematical Sciences Research Institute at University of California, Berkeley, is to communicate its love for mathematics and the mathematical sciences. Professor Robert Osserman (1926-2011) held a series public conversations on how cultural matters relate to mathematics. One of those conversations, entitled “Funny Numbers”, was with Steve Martin (actor, play-writer, author and musician). The San Fransisco Chronicle’s Jonathan Curiel described the December 15, 2002 event as

“Martin taking out a banjo and playing the instrument like a country music star; Osserman saying some things as wittily as his famous guest; and — halfway through — Robin Williams suddenly walking onstage, where he bantered, imitated, cajoled and gesticulated (about math, Trent Lott, French people, etc. ) as only Robin Williams can do.”

I laughed. Three incredibly intelligent people playing with conversation, Osserman helpless with laughter at times, held the public in the palms of their hands.



Assigning gender and “experts”

From Hverdagstoy
From Hverdagstoy

My daughter is a woman, yet was assigned male at birth. She has given permission to tell this part of her life.

Here in Norway, even now, anything that does not involve penis-hatred, makes you a person who is not a true transgender. Until the law is changed (in the works) a person cannot legally change their gender without a full surgical change of every single gender identifying body-part. That also goes for intersex people. (This law was changed July 2016 and you no longer need a physical transition for change of legal gender) In addition, hormone treatment cannot start at the onset of puberty – even to delay puberty. Unless, you get the diagnose “F.64.0 transseksualisme” at Rikshospitalet, you will be referred to psychological services instead. So people lie about how much they abhor their bodies. Without dysphoria, no treatment.

Through most of her life my daughter has presented as female. From she was about five years old she grew her hair out. It stayed long until a hair-dresser took it into her hands to cut it off. Never went back there again. When she was about ten years old, she came to me and very clearly told me she no longer wanted to be a boy. We sat down, talked about it and figured out exactly what she meant. I said I would see what information I could find and if there was a place we could turn for help.

I called around and said something like, “I have a daughter who is experiencing …… Is there any person there who can help her.” Norway is a small country (5 mill) and our access to specialists on gender in children is small. One place that is supposed to provide such expertise is Institutt for klinisk sexologi og terapi. Its founder is considered one of Norway’s foremost experts on sexuality. His name is Thore Langfeldt. This is the person we went to, and we thought we were in safe hands.

The short and simple of this acquaintance was that Sophia needed to work through her bullying and all would be well. By “well” it was understood that Sophia would be comfortable being a boy. I am Aspergers. Eleven years ago I was leaving Mormonism and had no clue about what gender really was. I’d always (and still do) presented as non-conformative as female. The idea of gender has confused me for as far back as I can remember. Some people call that gender queer. Me, I call it me. All three factors led me to accept Langfeldt’s verdict, and Sophia’s went through many years of unnecessary identity-struggles.

How life would have been for her, if Langfeldt had listened better and been a bit wiser is impossible to say. Perhaps better. Perhaps worse. Prejudice exists everywhere. What we can know is what did happen. Because Sophia was female in all but clothing (we aren’t exactly very fashion/gender-conscious) the boys would not accept her. But neither would the girls. All because of an initial. Things got dark in periods. Suicide was often thought of and planned by Sophia. During a two-year period she even tried presenting as male. All of the symptoms of depression were there.

Finally, the autumn of 2014, Norwegian TV2 showed a documentary series called “Født i feil kropp“. She once again went to Langfeldt who claimed she was “just gay” and to not tell us. Sophia knew she was very much into women. Thankfully, she found a better shrink. One who claimed that she was one of the most obvious cases of trans-woman that he had met. She told us. No problem. Here she is, one year after starting hormone treatment, and her hormone levels are well within female levels. She looks, sounds and behaves more like the world views women than I do.