Once a week.
Subscribe to our weekly newsletter.
Should Autism Be Cured or Is "Curing" Offensive?
Some within the autism community take issue with seeing autistic people as having a disorder, decrying the "cure culture".
While there are constant scientific efforts to find a cure for autism, some people do not feel a cure is necessary. In fact, they see neurodiversity as a new civil rights movement.
To its proponents, neurodiversity sees neurological differences like autism as genetic and "the result of normal, natural variation in the human genome," as said John Robison, a writer on autism issues, in Psychology Today.
They see the search for a cure to autism as something in the vein of searching for a "cure to gayness".
Indeed, if there is no currently available cure for 1 out of every 68 children in the US who have autism, or about 1% of the world's population, that's a lot of people who are trying to lead regular lives despite a varying degree of difficulties. And this number is rising as autism is the fastest-growing developmental disability (according to the CDC), with boys 5 times more likely to develop autism than girls.
Should society view such a large group of people as disabled or should it see them merely as different and find a non-judgemental path towards incorporating folks on the autism spectrum? This would include allocating budget resources going to what could be unnecessary medical research towards improving the lives of those who are diagnosed as neurologically diverse.
The autism rights movement (ARM) looks to foster greater acceptance of people with autistic behaviors, therapies that focus on coping skills rather than cures that would imitate "normal" or "neurotypical" people, and the need to recognize autistic people as a minority group.
A number of organizations advocate this type of approach. These include the Autism Network International, Aspies for Freedom (which established June 18th as an Autism Pride Day), the Autistic Self Advocacy Network, and the Autism Acceptance Project. Among their work to advance the rights of autistic people, some ARM groups go so far as to actively advocate against organizations like Autism Speaks and others that work to find a cure, looking to change what they see as detrimental "cure culture".
Understandably, controversies have followed such groups. As reported in this New York Times article, some autism email lists have been criticized for calling parents who are looking to cure their children as "curebies" who are depicted as "as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating".
As Julia Bascom from the Autistic Self-Advocacy Network told to the Daily Beast:
“The idea of a cure for autism doesn’t make sense. Autism isn’t a disease or an injury; it’s a neurodevelopmental disability that shapes our brains differently. If I can’t talk, does it make sense to look for a pill for that, or should my speech therapist help me learn how to type or sign instead? Is flapping my hands or intensely and obsessively loving something ‘weird’ or wanting to be by myself the psychological equivalent of diabetes, or is it a natural and beautiful part of human diversity?
One criticism of the autistic rights movement stems from the perception that it is being led by high-functioning autistic people, like those with Asperger's syndrome. While they may exhibit certain symptoms on the autism spectrum, many with Asperger's are able to lead lives similar to a non-autistic person and find the idea that they need to be "cured" offensive.
But to people on the low-functioning end of the spectrum, this approach might prove detrimental as it can prevent or delay treatments that they need and want. While differences in race or sexual orientation can cause societal oppression, they are not physically disabling a person in everyday life like neurological issues.
From heated arguments over vaccinations to its burgeoning civil rights push, it is clear that autism is a very emotionally charged topic and its increasing prominence is underscored by the rising number of diagnoses. Whatever may be the cause, how we view people who are autistic is a significant social challenge that needs discussion and action.
How would the ability to genetically customize children change society? Sci-fi author Eugene Clark explores the future on our horizon in Volume I of the "Genetic Pressure" series.
- A new sci-fi book series called "Genetic Pressure" explores the scientific and moral implications of a world with a burgeoning designer baby industry.
- It's currently illegal to implant genetically edited human embryos in most nations, but designer babies may someday become widespread.
- While gene-editing technology could help humans eliminate genetic diseases, some in the scientific community fear it may also usher in a new era of eugenics.
Tribalism and discrimination<p>One question the "Genetic Pressure" series explores: What would tribalism and discrimination look like in a world with designer babies? As designer babies grow up, they could be noticeably different from other people, potentially being smarter, more attractive and healthier. This could breed resentment between the groups—as it does in the series.</p><p>"[Designer babies] slowly find that 'everyone else,' and even their own parents, becomes less and less tolerable," author Eugene Clark told Big Think. "Meanwhile, everyone else slowly feels threatened by the designer babies."</p><p>For example, one character in the series who was born a designer baby faces discrimination and harassment from "normal people"—they call her "soulless" and say she was "made in a factory," a "consumer product." </p><p>Would such divisions emerge in the real world? The answer may depend on who's able to afford designer baby services. If it's only the ultra-wealthy, then it's easy to imagine how being a designer baby could be seen by society as a kind of hyper-privilege, which designer babies would have to reckon with. </p><p>Even if people from all socioeconomic backgrounds can someday afford designer babies, people born designer babies may struggle with tough existential questions: Can they ever take full credit for things they achieve, or were they born with an unfair advantage? To what extent should they spend their lives helping the less fortunate? </p>
Sexuality dilemmas<p>Sexuality presents another set of thorny questions. If a designer baby industry someday allows people to optimize humans for attractiveness, designer babies could grow up to find themselves surrounded by ultra-attractive people. That may not sound like a big problem.</p><p>But consider that, if designer babies someday become the standard way to have children, there'd necessarily be a years-long gap in which only some people are having designer babies. Meanwhile, the rest of society would be having children the old-fashioned way. So, in terms of attractiveness, society could see increasingly apparent disparities in physical appearances between the two groups. "Normal people" could begin to seem increasingly ugly.</p><p>But ultra-attractive people who were born designer babies could face problems, too. One could be the loss of body image. </p><p>When designer babies grow up in the "Genetic Pressure" series, men look like all the other men, and women look like all the other women. This homogeneity of physical appearance occurs because parents of designer babies start following trends, all choosing similar traits for their children: tall, athletic build, olive skin, etc. </p><p>Sure, facial traits remain relatively unique, but everyone's more or less equally attractive. And this causes strange changes to sexual preferences.</p><p>"In a society of sexual equals, they start looking for other differentiators," he said, noting that violet-colored eyes become a rare trait that genetically engineered humans find especially attractive in the series.</p><p>But what about sexual relationships between genetically engineered humans and "normal" people? In the "Genetic Pressure" series, many "normal" people want to have kids with (or at least have sex with) genetically engineered humans. But a minority of engineered humans oppose breeding with "normal" people, and this leads to an ideology that considers engineered humans to be racially supreme. </p>
Regulating designer babies<p>On a policy level, there are many open questions about how governments might legislate a world with designer babies. But it's not totally new territory, considering the West's dark history of eugenics experiments.</p><p>In the 20th century, the U.S. conducted multiple eugenics programs, including immigration restrictions based on genetic inferiority and forced sterilizations. In 1927, for example, the Supreme Court ruled that forcibly sterilizing the mentally handicapped didn't violate the Constitution. Supreme Court Justice Oliver Wendall Holmes wrote, "… three generations of imbeciles are enough." </p><p>After the Holocaust, eugenics programs became increasingly taboo and regulated in the U.S. (though some states continued forced sterilizations <a href="https://www.uvm.edu/~lkaelber/eugenics/" target="_blank">into the 1970s</a>). In recent years, some policymakers and scientists have expressed concerns about how gene-editing technologies could reanimate the eugenics nightmares of the 20th century. </p><p>Currently, the U.S. doesn't explicitly ban human germline genetic editing on the federal level, but a combination of laws effectively render it <a href="https://academic.oup.com/jlb/advance-article/doi/10.1093/jlb/lsaa006/5841599#204481018" target="_blank" rel="noopener noreferrer">illegal to implant a genetically modified embryo</a>. Part of the reason is that scientists still aren't sure of the unintended consequences of new gene-editing technologies. </p><p>But there are also concerns that these technologies could usher in a new era of eugenics. After all, the function of a designer baby industry, like the one in the "Genetic Pressure" series, wouldn't necessarily be limited to eliminating genetic diseases; it could also work to increase the occurrence of "desirable" traits. </p><p>If the industry did that, it'd effectively signal that the <em>opposites of those traits are undesirable. </em>As the International Bioethics Committee <a href="https://academic.oup.com/jlb/advance-article/doi/10.1093/jlb/lsaa006/5841599#204481018" target="_blank" rel="noopener noreferrer">wrote</a>, this would "jeopardize the inherent and therefore equal dignity of all human beings and renew eugenics, disguised as the fulfillment of the wish for a better, improved life."</p><p><em>"Genetic Pressure Volume I: Baby Steps"</em><em> by Eugene Clark is <a href="http://bigth.ink/38VhJn3" target="_blank">available now.</a></em></p>
It's hard to stop looking back and forth between these faces and the busts they came from.
- A quarantine project gone wild produces the possibly realistic faces of ancient Roman rulers.
- A designer worked with a machine learning app to produce the images.
- It's impossible to know if they're accurate, but they sure look plausible.
How the Roman emperors got faced<a href="https://payload.cargocollective.com/1/6/201108/14127595/2K-ENGLISH-24x36-Educational_v8_WATERMARKED_2000.jpg" ><img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yNDQ2NDk2MS9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTYyOTUzMzIxMX0.OwHMrgKu4pzu0eCsmOUjybdkTcSlJpL_uWDCF2djRfc/img.jpg?width=980" id="775ca" class="rm-shortcode" data-rm-shortcode-id="436000b6976931b8320313478c624c82" data-rm-shortcode-name="rebelmouse-image" alt="lineup of emperor faces" data-width="1440" data-height="963" /></a>
Credit: Daniel Voshart<p>Voshart's imaginings began with an AI/neural-net program called <a href="https://www.artbreeder.com" target="_blank">Artbreeder</a>. The freemium online app intelligently generates new images from existing ones and can combine multiple images into…well, who knows. It's addictive — people have so far used it to generate nearly 72.7 million images, says the site — and it's easy to see how Voshart fell down the rabbit hole.</p><p>The Roman emperor project began with Voshart feeding Artbreeder images of 800 busts. Obviously, not all busts have weathered the centuries equally. Voshart told <a href="https://www.livescience.com/ai-roman-emperor-portraits.html" target="_blank" rel="noopener noreferrer">Live Science</a>, "There is a rule of thumb in computer programming called 'garbage in garbage out,' and it applies to Artbreeder. A well-lit, well-sculpted bust with little damage and standard face features is going to be quite easy to get a result." Fortunately, there were multiple busts for some of the emperors, and different angles of busts captured in different photographs.</p><p>For the renderings Artbreeder produced, each face required some 15-16 hours of additional input from Voshart, who was left to deduce/guess such details as hair and skin coloring, though in many cases, an individual's features suggested likely pigmentations. Voshart was also aided by written descriptions of some of the rulers.</p><p>There's no way to know for sure how frequently Voshart's guesses hit their marks. It is obviously the case, though, that his interpretations look incredibly plausible when you compare one of his emperors to the sculpture(s) from which it was derived.</p><p>For an in-depth description of Voshart's process, check out his posts on <a href="https://medium.com/@voshart/photoreal-roman-emperor-project-236be7f06c8f" target="_blank">Medium</a> or on his <a href="https://voshart.com/ROMAN-EMPEROR-PROJECT" target="_blank" rel="noopener noreferrer">website</a>.</p><p>It's fascinating to feel like you're face-to-face with these ancient and sometimes notorious figures. Here are two examples, along with some of what we think we know about the men behind the faces.</p>
Caligula<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yNDQ2NDk4Mi9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTY3MzQ1NTE5NX0.LiTmhPQlygl9Fa9lxay8PFPCSqShv4ELxbBRFkOW_qM/img.jpg?width=980" id="7bae0" class="rm-shortcode" data-rm-shortcode-id="ce795c554490fe0a36a8714b86f55b16" data-rm-shortcode-name="rebelmouse-image" data-width="992" data-height="558" />
One of numerous sculptures of Caligula, left
Nero<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yNDQ2NTAwMC9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTY1NTQ2ODU0NX0.AgYuQZzRQCanqehSI5UeakpxU8fwLagMc_POH7xB3-M/img.jpg?width=980" id="a8825" class="rm-shortcode" data-rm-shortcode-id="9e0593d79c591c97af4bd70f3423885e" data-rm-shortcode-name="rebelmouse-image" data-width="992" data-height="558" />
One of numerous sculptures of Nero, left
A popular and longstanding wave of thought in psychology and psychotherapy is that diagnosis is not relevant for practitioners in those fields.
Scientists regenerate damaged spinal cord nerve fibers with designer protein, helping paralyzed mice walk again.
- Researchers from Germany use a designer protein to treat spinal cord damage in mice.
- The procedure employs gene therapy to regenerate damaged nerve fibers that carry signals to and from the brain.
- The scientists aim to eventually apply the technique to humans.