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Autism’s First Child (theatlantic.com)
111 points by pg on Sept 18, 2010 | hide | past | web | favorite | 29 comments

The problem with most conventional approaches to those who deviate from the norm is to put them in boxes and label them, but they're human beings! This outlook directly results in dissociation from them and confining them to the label of other-ness.

On the other hand it is very, very rare to find complete therapy for an autistic child in most countries. It takes a lot of patience to teach such children, or adults anything. Unfortunately, if someone has a conventional model of behavior in their minds then they tend to get really angry really fast. So, what if we could make something, an interactive toy, that taught these skills to children?

I've always wanted to make touch sensitive panels with a display on them to teach kids vital social skills through play. If we make them smart enough to encourage safe interaction then it should be possible to teach social interaction skills at an early stage, but to do any of this we need to move beyond the disorder model and cookie-cutter attempts of making such kids fit in.

Why? In the conventional point of view Donald could never have a future like this and, hence, there's no point of even trying which is simply heartbreaking. I believe that there should be a path for such children which goes beyond such things. They're unique and no matter how different from the norm they may be. They deserve to be loved and cherished for who they are. Not who we want them to be.

All the best people are slightly different.

All people are slightly different.

Reading this really makes me want to recommend the Norwegian movie Elling - it's witty, completely unschmaltzy and hints at a pretty good answer on what good care for adult mentally challenged folk looks like.


It's streamable on Netflix for the US-based folks:


I'm really curious. What about reading this article made you think of Elling and what you refer to as "mentally challenged folk"?

Maybe I'm missing something (I haven't seen the movie, but from the imdb link you posted, no mention of autism)... but it seems to me like you're saying "having autism = being mentally challenged". Am I misinterpreting? I hope so :(

The article refers to the fate of adult autistic children when their parents die. The movie's character relates to a person in similar circumstances - his mother dies and a social worker places him in sheltered then independent accomodation.

I apologise if the phrase "mentally challenged" was offensive or inappropriate (the English language never fails to trip me up). As far as I can recall, the movie does not identify the specific developmental disability, but the main character engages in obsessive and ritualistic behaviours and has a number of challenges with fully integrating in society. His friend has different issues. The movie has a very positive message, as had the OP. I encourage you to judge by yourself rather than read the IMDB description. If you feel I have misrepresented it, I am interested in your views, my contact details are in my profile.

The real issue, I thought, is what is the appropriate level of state intervention / social support in circumstances where the parents-caregivers pass on.

I don't think the English language tripped you here but the overtly PC atmosphere surrounding conversations about differences in people.

I wasn't trying to be PC at all. I'm the least PC person I know: I'm an Aspie, I have little to no filter. I was just seeking clarification :)

Thanks for clarifying :)

No need to apologize. The phrase "mentally challenged" is used by many people, with different meanings and intentions. Rather than jump on you straight away, I wanted to be sure of what you meant.

As someone on the spectrum, I like hearing/reading what other people think about it and their associations, etc. I prefer to think of myself as just having a differently wired brain (i.e. there are some things I excel at that others don't, and vice versa).

Some people with autism are severely mentally retarded. In fact, classic Kanner's syndrome (the original autism) generally also means severe mental retardation. Other people are labeled "high functioning autistic" (also called "Asperger's Syndrome") and can be very intelligent but have some challenges in areas like social skills. Still, most their social difficulties are, essentially, a form of being mentally challenged. Though there are some exceptions. For example, the folks who are also faceblind (fairly common among autistics) face social challenges due to their difficulties recognizing people, which is different from just not understanding the social stuff but has a similar outcome.

(Both my kids fit the profile for ASD. No formal diagnosis.)

Yes, some cases are severe. But not all. Which is which is why I, personally, don't think the whole lot should be referred to as "mentally challenged". But that's just my opinion.

I'm an Aspie and don't consider my social deficiencies to be a form of being mentally challenged. I just see my brain as being wired differently than others. I excel at some things my husband is terrible at. He excels at other things I'm terrible at. It doesn't make sense to arbitrarily assign me with the mentally challenged label in that context. In protest, I reject the label :) If we met, you probably wouldn't even know I was an Aspie. I've been told I don't "look like" someone with autism. I don't know what that means, but I'm pretty sure it has to do with stereotyping and labels.

I also say "autistic". I don't care if Jenny McCarthy thinks it sounds like I'm calling myself cancer. Even if she is hot ;)

I'm not saying you're guilty of this, but for many of us (Aspies, Auties) it feels like other people label us and we're not allowed to even engage in a discussion about our own label.

The way you asked the question, I assumed you simply didn't know. :-)

I have heard Jenny McCarthy referred to on autism email lists. But I am not actually familiar with whatever her position is. Actually, I have no idea who she is either, other than someone controversial in the autism community.

To quote Madonna: "I hate labels. They are too limiting." But, as I often add in such discussions, we still need some means to talk about and think about such things, and that generally means labeling them.

Mea culpa. I should have been more clear about that :)

Jenny McCarthy was on MTV back in the day. Also in Playboy. Her son is on the spectrum and she believes it was caused by vaccinations. She doesn't like when people refer to people with autism as "autistic" because she thinks it's the equivalent of calling someone with cancer "cancerous". I respect her passion for helping her son, but I disagree with her. It's a fine balance: parents of small children with autism want to fight for their children's rights and protect them... but sometimes it's the parents themselves who are placing these kids in a tight box that's very limiting. Try to avoid that with your kids (yeah, easy peasy, right?).

Labels are indeed a necessary evil in order to talk about anything, really. In an ideal world, I'd like it to be a label that was mutually agreed upon, not forced on me. But, I think my vote should count for a bit more ;)

Please feel free to contact me if there's anything I can shed light on regarding your kids and ASD :)

Please feel free to contact me if there's anything I can shed light on regarding your kids and ASD :)

Thank you for your kind offer. My "kids" are 20 and 23 and are doing quite well. I've given plenty of advice myself over the years to other folks with kids like mine. :-)

Oh that makes me immensely happy to read! It's always a good feeling when other 20-somethings with ASD are doing well :)

Watch the movie first. The description doesn't really do it justice.

Separately, though, if you ignore some of the connotations, it does seem fair to call autism a "mental challenge".

I will definitely have to watch it.

Yes, a "mental challenge" just like it might be a mental challenge for someone without my skill set to do something that I excel at naturally, yet I don't call them "mentally challenged". But that's not the issue.

There are some people who, when using "mentally challenged", are relying on your implicit understanding of those connotations to communicate something else. It is by pretending those connotations aren't there that we now have stereotypes about autism, etc. It's why people tell me I don't "look like" I have autism.

So, in that sense... I don't think it's fair. But I'm an Aspie and that renders my opinion on the matter of my own labeling inconsequential ;)

I always enjoy theatlantic submissions here; this one is really sweet.

single page (also js-free!) http://www.theatlantic.com/magazine/print/2010/10/autism-821...

It's a meaningful submission, from that submitter, on a day of massive HN introspection.

Autism is a gradual thing, not a binary thing. It's not you have it or yo don't there is a whole spectrum of the levels that people exhibit and it can go from being an advantage at times to rendering it impossible for an individual to function normally in our society.

People with a physical disability have a whole lobbying system in place to force society to make room for them, mentally challenged people, by their very nature, do not have anything that compares and likely never will.

"Certain words and phrases captivated him, and he would loop them aloud endlessly: trumpet vine, business, chrysanthemum. "

I want to know more about this idea.

I think we can agree that words like BIZ-en-Ness and CHRYS-ant-THENUM have a strange ring to them compared to the rest of the English language when pronounced aloud. (Also that word, "ALOUD")

From my experience, I'd expect most people as kids had at least one pet words that had nice ring.

Some people get songs stuck in their heads, I get words or phrases looping over and over. Sometimes I'll get both a song and a word repeating in separate loops at the same time! I think it's a similar mechanism though, it's a lack of closure. I believe they repeat because my brain is looking for connections, or trying to learn something from it. The annoying ones are when I can't remember the ending of a song, so the middle keeps looping over and over. Or if I can't quite remember the definition of a word, very annoying. The best ones are the ones I can remember all of the tune but it surprises me every time.

Edited for clarity.

To me the annoying ones are the ones I can't seem to get rid of, no matter how hard I try. I've got the a short vocal fragment from an Annie Lennox song stuck in my head for days at the moment so I feel very connected to what you just wrote.



Good grief, I can't even spell it!

Now that was fun, thanks. I find it annoying that I am taught to spell a certain way, but then the British keep reinventing spellings with "s" instead of "z" and adding an "i" in there just Americans on their toes.

"... their lack of interest in people, their fascination with objects, their need for sameness, their keenness to be left alone ..."

which can be experienced when you are working on some code, trying to make bug-free and of course someone has to come over and start a conversation...

"... The rules keep changing on me. Every time I think I learn a new rule, you change it on me ..."

Psychology gives you the tools, observation the environment.

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