What new technologies could fight autism?

The dubious way of dealing with autism in the USA

April 2nd is known as ›World Autism Day‹, on which sights are illuminated in blue. This is also being propagated by a controversial autism charity.

Felix Huebner is 16 years old and is currently doing an internship at DATUM. Since last September he has been attending the I-FIT school with a socio-educational focus in Vienna's second district. He is interested in politics and journalism and is Asperger's autist.
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Dan Scavino / Public domain

When we think of social classes in Europe that are having a hard time in the US, we mostly think of people without health insurance, unemployed whites in states with poor infrastructure, blacks living in ghettos, indigenous people on reservations, and Latin American immigrants. But it is not easy for other minorities in America either. Many Europeans are unaware of the plight of people with autism in the United States. While many of them lead decent lives, the autistic community there also has many problems. One of them is the world's largest international charity specializing in autism.

For many Europeans outside of English-speaking countries, the name “Autism Speaks” means nothing at all. The organization, which also operates in Canada, the UK, Australia and New Zealand, was founded in 2005 by US media mogul Bob Wright and his wife Suzanne when their grandson was diagnosed with autism. The declared aim of the organization is to create awareness for the world of autistic people and their families. To this end, AS cooperates with numerous organizations such as the TV network NBC (which Wright previously headed as CEO), the publicly funded television station PBS, Google, the United Nations, the White House and several other aid organizations for neurotypical people. Every year, AS dedicates the month of April entirely to “Autism awareness”. Under the motto “Light it up blue”, monuments around the world will then be illuminated in blue, the color of the organization. In the same month the "Walk for Autism" takes place.

What exactly is problematic about that? After all, AS seems to be a real heart project from Wright. But if you do a little research, you find that the organization is hated by many autistic people.

AS is financed through donations, a large part of which is in turn invested in marketing. The advertising films, which were produced for marketing purposes, have already caused outrage and controversy several times. Examples are “I am Autism” from 2006 and “Autism everyday” from 2007. In “I am Autism” you can see video recordings of children while a voice, who calls herself "Autism" talks about it. Sentences like: “I don't sleep, that's why I will make sure that you won't sleep either”, “You won't be able to enter a church, a public playground, a birthday, or a wedding without humiliation and shame”, “And if you have a happy marriage, I will see to it that your marriage fails, ”and finally,“ I am autism. You ignored me. That was a mistake".

The film then becomes a declaration of war on autism. The children are suddenly surrounded by their families, several voices can be heard talking about the absurdity of the fact that autism should even be fought “through technology and vodoo”. The advertising portrays autism as a child-robbing demon, AS and their work, on the other hand, as a rescue for threatened families.

In the second short film, “Autism everyday”, mothers of autistic children are interviewed. They say that "you can't really take a day off from autism". If you pay attention and think carefully, then the things for which parents blame the neurotypical perception of their offspring - screaming, crying, running in spite of traffic, not eating - are completely typical for small children. With that in mind, the scene in which one of the mothers (fathers don't appear in the film) complains that their one-year-old son isn't talking seems more absurd than touching. It quickly becomes clear that this is not about the everyday problems of the children, but about the worries and wishes of the parents. A mother complains that her son "will never be married and never have children" and that she is sad at weddings because she will never be able to dance with her son at his wedding. According to the logic of the film, it is impossible to be attracted to people with autism, and they are principally repulsive. Another mother says her goal is to bring her son to Harvard. Another mother said she had thought for 15 minutes about throwing her six-year-old daughter off a bridge in the car. It is also mentioned that there is hope for a "cure for autism" (a goal that the organization has officially distanced itself from since 2016).

In later campaigns, children were the focus, but some content-related problems can be criticized. Autistic traits such as B. Rejection of eye contact and noise are presented as the absolute norm, while positive aspects are neglected. In any case, the target group is still not: autistic parents and children.

Cooperation with third parties also led to controversy. When the popular children's series Sesame Street introduced the autistic doll Julia in 2017, critics and viewers praised the decision and the cliché-free representation of the character. The character even made it into the Thanksgiving Day Parade in New York. The character, like many other characters on the station PBS, soon became a kind of mascot for the organization. She appeared in videos on AS’s official YoutubeChannel, and was also part of the 100 Day Kit, a free downloadable file of tips for family members. This led to criticism of the "Autism Self Advocacy Network", also located in the United States, an organization by and for autistic people, which AS et al. criticized for their lack of autistic staff. ASAN had previously advised the creators of the series on the development of Julia, but broke the partnership when Autism Speaks came into play.

An even more controversial partnership is that of the annual April Walk for Autism with the controversial Judge Rotenberg Center (JRC). This is an education center that uses methods such as food and sleep deprivation as well as electroshock therapy. Between 1981 and 1990 there were three deaths in offices of the JRC. Manfred Nowak, among others, raised criticism during his time as UN special rapporteur on torture. Mathew L. Israel, founder of the center, has already been charged with ill-treatment and destruction of evidence.

Autism in the Trump house

As mentioned above, one of AS's key partners is the White House. There was already cooperation with the US government under the presidencies of George W. Bush and Barack Obama. Under Donald Trump, the "Autism cares Act", a measure to support autistic fellow citizens, was signed and endowed with 1.8 million dollars. What is interesting about Trump is his earlier comments on the subject. So he wrote down in March 2014 Twitter: “A healthy young child comes to the doctor, is pumped full of a huge shot of vaccines, does not feel well and changes: AUTISM. [Something like that] happens all the time. ”According to his own statement, Trump has basically nothing against vaccinations, but one shouldn't do it several times, because that would cause autism, which has become“ an epidemic ”. In fact, the number of people with autism has recently increased in the United States. However, it is believed that this is related to a greater awareness of them. On the television show "Fox & Friends" Trump called Bob Wright and his wife Suzanne "great friends". The proximity of the Trump administration to AS was evident when the White House was lit up in blue on April 3, 2017.

But that is not all. Of all those who are affected by the controversy surrounding Trump, none stands out like his son Barron Trump. His behavior has often caused bizarre controversy. When he rolled his eyes tiredly during his father's speech on the evening of the election victory, many speculated whether the boy was autistic, that he had been awake all election night was ignored by most. Another scandal came when Barron yawned during his father's inauguration. Youtuber James Hunter posted a video speculating that Trump's son might be autistic. Comedian recommended Rosie O’Donnell Twitter the video with the words: “Barron Trump autistic? If so, a great way to raise awareness of the autism epidemic. ”Barron's mother, Melania Trump, threatened legal action against Hunter, accusing O’Donnell of bullying. The Youtuber took the video off the net and published an apology (note: both videos no longer exist). O’Donnell also wrote an apology stating that her belief in an autism epidemic was triggered by her neurotypical daughter. Even if the excitement has now subsided, the rumor persists that Trump actually wrote about his son in the tweet mentioned above.

Musk the faith healer

There are many people around the world who think that autism can or must be cured. According to them, it is caused by vaccinations, environmental toxins and parasites in the body. The bleaching agent MMS and homeopathy are considered healing options. However, this theory is wrong, because autism is not a disease and only leads to a different way of thinking and perceiving. It is not a recoverable "defect".

The entrepreneur and multi-billionaire Elon Musk is one of the most influential proponents of the curability thesis. Musk is largely known for his work with electric cars and space travel. One of his lesser-known side projects is Neuralink, a company that makes brain chips that are believed to help cure schizophrenia, Alzheimer's, and autism. One of the critics of the project is the neuroscientist Randy Bruno, who works at Columbia University. He said in an interview with the magazine insider, Musk and Neuralink should instead focus on making prostheses and curing blindness, as this is definitely more helpful than a brain chip.

The consequences

There are many shocking examples of the consequences of lack of information about autism, even outside of the United States. The Chinese video portal Tik Tok for example, hides videos of apparently disabled people, including those (allegedly) autistic. The moderators of the site have to decide within seconds of the user's appearance whether there is a mental or physical limitation or not. According to Tik Tok the purpose of this is to limit cyber-bullying on the platform, but critics suspect the preservation of a flawless worldview as the intention.

A scandal broke out in Canada in 2013 when a family received a hate letter from a neighbor advising them to euthanize their autistic son, who was living with his grandmother at the time, and to use his "non-disabled body parts" for science "because no employer would hire him and no normal girl would love him. The sounds he makes would frighten their "normal" children. The family experienced great solidarity from the rest of the neighborhood. Under Canadian law, the act is not a crime from a legal point of view. Of course, “hate crimes” like this can happen anytime, anytime. One question that should be asked is whether a climate promoted by organizations like Autism Speaks in which autism is viewed as a defect and a disease to be eradicated does not encourage people to express their hatred of others.

Although Autism Speaks is currently only active in English-speaking countries, the consequences of their campaigns can be observed worldwide, and since the organization works with the UN, expansion into other countries in the long term does not seem improbable. Autistic people are by no means second class by law in the United States. Nevertheless, social interaction with them there should be a lesson to the rest of the world in dealing with minorities.