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Comment by typewithrhythm | Hacker News Reader

Seeing a minute fraction of their existence is a rubbish way to make a judgement.

Most of they bring to the world is random rage, unspeakable fluids, and unpleasant interactions.

But I guess driving past safari style is fine.

Do you live or regularly interact with someone who has Down Syndrome, or have any kind of data that would support the idea that people with Down Syndrome are exceptionally violent?

What a terrible thing to say. You have a lot to learn about them.

What? Are you talking about real, live people with Down Syndrome? Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else. That wouldn't make much sense if "most" of what they bring to the world is "unpleasant interactions."

> Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else.

Can you point to any that you have read?

Here are a couple:

- Parents: https://pmc.ncbi.nlm.nih.gov/articles/PMC3353148/pdf/nihms37...

- People who have DS: https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/pdf/nihms37...

- Siblings of people with DS: https://doi.org/10.1002/ajmg.c.30101

Thank you. I hadn’t seen any of the literature on this.

> A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit Down syndrome organizations.

Definitely no sampling bias here... And given that the vast majority of people who do prenatal screening decide not to have a child with Down Syndrome, I don't think the people who choose to have a Down Syndrome child are really representative of prospective parents as a whole.

The revealed preference is clear, particularly in places like Iceland where prenatal screening is ubiquitous. They have effectively eradicated Down Syndrome going forward.

The perspective in question is about what it's like to raise a child with Down Syndrome.

Why on EARTH would the opinions of people who were so scared of the experience that they never tried it at all even for a minute be relevant to that perspective?

Because people can reasonably predict whether they will be happy doing something before they do it. Like for example, if you polled people who had gone skydiving and asked whether they enjoyed the experience, I'd expect many would say yes. After all, they voluntarily signed up for it and paid money to do it. But if you randomly selected people and made them jump out of a plane, the results would be very different.

Also, people who have had negative experiences raising a child with Down Syndrome are presumably far less likely to be involved with non-profit organizations related to Down Syndrome.

What? People suck at predicting whether they will enjoy things, especially when they know little about them. Regret is staggeringly common. Look at divorce rates if you want a life decision of comparable magnitude. And the opposite is just as true, that people are constantly finding new things they enjoy, or even love passionately, when they least expected it.

There must be some selection effect at work. "Those who live with them" are the ones who have chosen to live with them, which excludes:

a) all who have learnt about the situation before birth and chose abortion,

b) all who gave the kid away to some institution.

A N == 1 case from my life. My classmate had a Down kid at 20 - very rare, as Down is not typical in young mothers. She seems to be happy, even though she sacrificed her dream of a bigger family for him; it was so challenging having a Down kid that she didn't have any other.

But the father absconded and wants nothing to have with his disabled son.

Of course there is, but when the perspective being asked is, "What's it like to raise a child with DS?" the only people who validly have an opinion are parents of kids with DS.

A different N==1, a friend and coworker of mine had a son with DS at 23. He's now the oldest of six children. They're doing great, and he's a terrific big brother.

I think the studies matter because N needs to equal more than 1 to get a sense of how it goes for the people who do it.

Counterpoint. My youngest son has DS. He's an absolute nightmare sometimes.

Whereas some children might get into a mood and be ok after an hour, he does not unless his environment is changed.

He will literally scream or moan non stop for 6-8 hours (yes you read that right, and it's no exaggeration). He would do this when in environments he doesn't recognise, so imagine an airplane, imagine a restaurant, imagine a trip out...

We can't do those things anymore because of the actual judgement we get from other people (oh and I could write a post on this alone).

Then, when we return him to the car to drive home, his behaviour instantly turns to a smile and blowing raspberries.

We also can't get respite, our parents are too old, friends don't feel right babysitting, council services won't yet see him as old enough or have no availability, so it leaves us hiring privately, which is expensive, difficult and low availability.

Of course this takes its toll on our mental health, his sibling and us.

So on one hand I'm pleased it can soon be stopped for others, but on the other it makes up my son's behaviour, who I absolutely love regardless of the impact he has on us without realising, because there are times when you will see the stereotypical love and happiness when it is unexpected.

But I would not say I have greater happiness.

I feel you.

I've got a 13 year old daughter with DS. We don't have 6 hours of screaming but she has definitely thrown her share of hissy fits. My personal favorite was driving into my son's snooty private boy's school while she was sitting in the back without a shirt on (She was 12 at the time).

Or the time she decided to sit down in the middle of a busy street while we were trying to cross it and we ended up dragging her across the road skinning her feet and almost getting hit by a truck.

Usually she is happy and has tons of personality but it really does make things harder at times.

I should probably add my that my usual comment when anyone asks is that having a kid with DS sucks but not as badly as a lot of other disabilities.

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