A Six-Year-Old Girl Died of Gene Editing: Autism Is Not an Error to Be Fixed
Autism is not a war to be won; it is a way of being. When parents and scientists refuse to accept that, they put a child whose condition was not fatal onto a high-risk operating table.
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The argument · tap a timestamp to hear it
The girl did not have to die at all
When Xu Yue (徐悦) saw the headline, her first reaction was to assume the child must have been severely affected: unable to walk, unable to care for herself at all. Then she read on and learned that just before she died the girl spoke a complete sentence — ‘I want to go home’. She was not a severe case. She had a language delay, and behavioral intervention and speech therapy were available to her; her parents chose high-risk gene editing instead. Xu Yue argues that what sits behind that choice is society-wide ableism: we assume by default that a life with disability is not worth living, and so we are willing to gamble a life in order to ‘fix’ a child who falls short of the standard.
Scientists ran the human trial after the monkeys were already injured
One month before the human experiment, four monkeys developed kidney damage and one developed severe liver damage. More shocking still: in the paper the experimenters published in Nature, they wrote up only the successful portion of the monkey work and erased the clinical data on Xiaomei's (小美) death entirely. Xu Yue notes that the United States also had cases in the early 2000s where gene editing led to a child's death — but Chinese biological research today carries a Great Leap Forward (大跃进) style of radicalism, with scientists thinking ‘we want to create something America cannot’.
The field turned from combating autism to caring for autistic people
A US congressional bill was once called the Combating Autism Act — combating autism — and that era was full of dangerous therapies: gluten-free diets, bleach enemas, removing heavy metals. The reason the scientific community eventually pushed them down was that more and more autistic self-advocates began to speak: ‘Why do you insist on changing us into the shape you want?’ Around 2010 was the turning point; since then no biological treatment has been claimed to ‘cure’ autism.
Autism looks more common because society changed, not because genes did
Over the past thirty years, diagnoses of intellectual disability have fallen while autism diagnoses have risen. Xu Yue argues that what lies behind this is not a change in the rate of genetic mutation but a difference in cultural stereotype: autism can be imagined as genius, and intellectual disability cannot. At the same time, industrialization eliminated the manual labor that once suited autistic people. The Michelangelo-like repetitive motion and pursuit of detail could once be exchanged for a decent job; today it is treated as a problem.
The golden window for intervention runs from eighteen months to six years
Evidence-based intervention is the most reliable path available today. Between eighteen months and two years, if a child does not look at people much, does not point at objects, and only stares at spinning wheels, intervention should begin. But intervention does not mean medication or gene editing; it means the parent putting down the phone, sitting down and playing with the child: guiding shared attention, taking turns stacking blocks, learning language naturally inside the interaction. There is no mysterious pill in it, and yet it may be what helps a child walk into preschool at five.
The US system carries a child from preschool all the way to adult housing
New York and California provide ten hours a week of behavioral intervention, and from three to five a child can attend half-day inclusive special education. The IDEA statute guarantees every child with a disability a free public education in the least restrictive environment. At fourteen and a half, planning begins for where a student goes after high school: community college, skills training, or straight to work. Severe cases can draw on Medicaid as adults for care funding, and there are placements such as group housing. One boy in California did not start speaking until he was eleven; today he can drive himself, has a girlfriend, and does cleaning work at a public school.
Chinese American families lose out by refusing to stick their necks out
Chinese American parents are generally very invested, but the language barrier means they cannot read the special education plans; and the school will not volunteer that ‘we can provide an interpreter’, because that would mean spending money. Thornier still is the cultural mindset — Chinese families live by ‘the bird that sticks its head out gets shot’ and are unwilling to take part in policy advocacy. Xu Yue observes that among minority groups, the ones who do advocacy best are in fact Black families: they understand what is being said, they dare to fight for it, and they know how to use the law to defend their own and their children's rights.
Whose suffering it is decides whether you fix the person or society
When she was younger, Xu Yue might have said that suffering needs to be eliminated; now she asks first: who is in pain here? If it is pain belonging to the autistic person themselves, it should be intervened on. If it is suffering produced by social stereotype — the sense, for instance, that a life with disability is simply over — then what should change is society. ‘Why is it that Hawking, with nothing left but his eyes, can be considered worth living, considered a scientist, and yet this little girl's life is considered not worth living?’ A thorough solution requires a social support system underneath, rather than parents carrying all of the risk alone.
In their own words · checked verbatim
When I saw the title of this news story, my first reaction was: so was this child extremely severe, unable to walk, completely unable to care for herself? And then I went in and saw that she said to her mother, she said, I want to go home — when she was dying, saying to her mother, I want to go home. I was actually very angry.
我看到这个新闻的title的时候，我的第一反应是，那难道这个小孩就是非常严重，不能行走，完全的不能自理嘛。然后我进去以后看到，她跟她妈妈说，说我想回家，就是临死的时候，跟妈妈说我想回家的时候，我其实是很愤怒的。
Xu Yue5:13
You'll find that in Silicon Valley the rate of autism is higher, because everyone thinks like an engineer, extremely attentive to detail.
你会在硅谷发现，这个自闭症的比例会更高，因为都是理工思维，非常注意细节。
Xu Yue22:20
In the most ideal situation, the school will offer parents all sorts of plans and options, and sometimes the school will also provide some employment training, or independent-living training — things like how to count money, how to use a credit card, how to take the bus.
最完美的状态下，是这个学校会提供各种各样的计划的方案给家长，有的时候学校还会提供一些就业的培训，或者是独立生活的培训，比如说怎么数钱，怎么用信用卡，怎么坐公交车这种。
Xu Yue36:12
Almost every parent of an autistic child will say: my child smiles at me more than other children smile.
几乎所有的自闭症的小朋友的家长都会说，我的小朋友跟我笑的比其他小朋友笑的更多。
Xu Yue48:36
Figures
| Patients worldwide with Snijders Blok-Campeau syndrome | roughly 200-odd | 4:03 |
| Monkeys with kidney damage in the animal experiment | 4 (plus 1 with severe liver damage) | 7:06 |
| Share of people with spinal cord injury who rate their quality of life as high | over 80% | 8:07 |
| Share of doctors who think quality of life can be high after spinal cord injury | somewhere in the teens, percentagewise | 8:07 |
Glossary
- Ableism (健全中心主义)
- The bias that treats ‘able-bodied’ as the default standard and the moral high ground, holding that a life that is not able-bodied is not worth living.
- IDEA (Individuals with Disabilities Education Act)
- US federal law guaranteeing students with disabilities aged 3-21 a free public education in the least restrictive environment.
- Evidence-based intervention
- Intervention methods confirmed effective by a large body of scientific research; in autism the main body of this is behavioral intervention.
- ASD (autism spectrum disorder)
- A neurodevelopmental condition with symptoms appearing in childhood, involving social communication and sensory-perceptual traits; diagnosed clinically on behavior.
- ABA (applied behavior analysis)
- The behavior-analytic method with the most evidence behind it in autism clinical intervention today, commonly used in schools and treatment centers.
- Medicaid
- US health coverage for low-income people, which sometimes pays part of a caregiver's costs for severe cases.
How to listen
Parents of autistic children; doctors and behavioral therapists working in child development; people in tech and medicine who care about disability ethics.
The first 2 minutes are a promo for the station's series on caregiving, and can be skipped.