Can people with Williams Syndrome have children?
A rare genetic defect ensures unconditional charity
People with Williams syndrome are often not good at reading social stimuli. They don't know when to end a conversation or when to leave. Eli also struggled with connecting at the conversational level. He had a fixed repertoire of questions that he always asked. "Do you have a dog? Where is your father? Do you have children? ”His interests are similar to those of people with autism. He is fascinated by everything that turns: ceiling fans, wind turbines and, above all, mops. [Laughs.]
You write: "One of the most heartbreaking dangers of raising a child with Williams is that the child loves you deeply and unconditionally, but feels the same for his bus driver." How did Eli's mother, Gayle D'Angelo (also a pseudonym) to?
It was a tough fight. Eli has been a single parent since she was seven. And Eli's impulsiveness seemed so strong that he just couldn't stop hugging people. He knew this was wrong and would apologize when he reached out to hug a waitress or a stranger. He said, "Sorry mom," and then did it anyway.
She wanted to protect him at all costs. She didn't want him to be taken advantage of, so she barely took her eyes off him.
She also had another fear. If he grew up and then still threw himself on people's necks and showered them with affection, it would look a lot less lovable on a grown man than it would on a little boy.
This became particularly problematic when he turned 13. Eli didn't have the self-esteem and embarrassment that many of us have when we are teenagers. He was walking around with an erection and didn't understand that there was anything unusual about it.
Williams syndrome is caused by some missing genes. Tell us about the Williams Syndrome neuroscientific experiments being done at the Salk Institute and the role of oxytocin.
That’s fascinating! At the Salk Institute they are trying to find out which genes contribute to which symptoms in Williams. The original hypothesis was that all symptoms and characteristics depend on the interaction between several genes. There is no single gene that determines eye color alone - there are diverse genes that interact together. So not every person with William Syndrome is missing the exact same 26 to 28 genes, although 99.9 percent do.
They accidentally found a girl who tested positive for Williams Syndrome and who had many of the typical symptoms such as cognitive disabilities, health issues, and the facial features. But she didn't have the same exuberantly kind, extroverted personality. So they did some research and found that she was missing all of the Williams genes except one, which seemed to be related to the quality of kindness. That was groundbreaking.
The researchers understood that there was a link to oxytocin levels. They knew that oxytocin plays a role in social and intimate behaviors, such as mother-child bonding and romantic encounters. And they found that people with Williams Syndrome have significantly more oxytocin than others, and that it fluctuates a lot in their brains. The result is that they feel the biological impulse to love all the time.
One of the surprises for me was your theory that Shakespeare's foolish figures - and even the fairies and elves - might have suffered from Williams Syndrome.
Before modern science, this was a more magical way of explaining why someone appeared so different. It is known that many fools in medieval courts had disabilities because of historical records of someone being paid to look after them. At that time, however, no one knew what Williams syndrome was. One can assume, however, that if you were to pick someone based on their ability to be a good storyteller, funny, and good at puns, then those traits would apply to someone with Williams syndrome. But of course that is only an educated guess.
An exciting discovery is that those affected by Williams - to quote Oliver Sacks - are "a hypermusical kind". Why do you have this special relationship with music and how was that expressed in Eli's case?
There was a study from Vanderbilt University that Eli took part in. It should clarify whether people with Williams tend to have perfect pitch or to be musical savants. Some say that people with Williams are more likely to be musically gifted than the average person, but others disagree. It's not entirely clear. But it's clear that with Williams, people are driven by music. You react very emotionally to a sad song and you start to cry. They dance to a happy song.
That also applies to Eli. Whenever he's not talking, he's singing or humming or doing something rhythmic with his hands. His taste in music seems to depend on the drama of the music. He's a huge fan of Meatloaf, Pavarotti, and Lady Gaga.
I was also intrigued by the cross-cultural comparison of the syndrome. Tell us about Carol Zitzer-Comfort's research in Japan and the USA.
She found that Williams expresses himself the same way in different cultures, but that people react differently. In the US, where we value extroversion, warmth, and physical closeness, it's not that big of a problem. In Japan, it is considered very rude and intrusive to go up to a stranger and give him a hug. Therefore, parents in Japan described the syndrome as very problematic. People with Williams are also more likely to be admitted [in Japan] than in the US.
You can't tell Williams syndrome through prenatal testing. Could that change? And how do parents-to-be currently deal with this option?
It's not that you can't tell on prenatal tests. It would just be very expensive, as you are not currently researching to this level of rarity. I think that will change as technology advances and it will be cheaper and easier to get a test for any genetic disorders. It may still happen in the course of our own lives.
Some even talk about having people sterilized with Williams - not the government, but some parents I spoke to. From a reproductive standpoint, Williams is a random mutation. So two normal people have a 1 in 10,000 chance of fathering a child with Williams. But if you have Williams yourself, the odds are 1: 2. For many parents with severely cognitively handicapped children, the question arose as to what would happen if these children could not raise their own children themselves. For someone with Williams, going through pregnancy is very stressful. But it's a sensitive issue as we have a dire history of forced sterilization for people with disabilities and mental illness. People with Williams have every right to determine their own body.
You write, "Despite their disadvantages, people with Williams illustrate some of the best qualities of humanity." Take that and explain how your time with Eli changed your own view of the world.
A 2010 study found that people with Williams did not have bias effects based on skin color and ethnicity, while all other groups showed an implicit preference for their own ethnicity. That's part of us through evolution. If you have not been a member of the tribe in the past, you are very likely to have been classified as a threat.
It is amazing to see how people with Williams treat everyone else with a fundamental belief in the good in them. For me personally as an introverted person who is more suspicious of new people than the average person, it was uncomfortable to watch Eli approach people so openly. I thought, "Oh my god, you are taking such a risk, you are in such great danger!" But 99 percent of the time, the person responds positively. Watching him take risks that I would never take and then see how things turned out well - that changed me a lot.
It's not like I've learned new tricks for making friends and influencing people. But I've learned that you can be more open and more vulnerable. And that you can gain something from it.
The interview has been edited for length and clarity.
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