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'Catch Me If You Can'
August 18, 2012 2:47 AM   Subscribe

"When Robert Wood Jr. disappeared in a densely forested Virginia park, searchers faced the challenge of a lifetime. The eight-year-old boy was autistic and nonverbal, and from his perspective the largest manhunt in state history probably looked like something else: the ultimate game of hide-and-seek."

Single-link version of main article. An interview with Robert Koester, 'about looking for autistic children.' NBC12 has a series of stories on the search for Robert 'Bud' Wood Jr.
Gothamist has a story on the autistic 13 year old found riding the subway after three days. 'Missing Autistic Bronx Boy's Odyssey Illustrates Challenges Highlighted During National Autism Awareness Month'

'Dangerous wandering a lesser-known side of autism." "Parents of Special Needs Children Worry About Elopement" and 'Nearly 50% of children with autism elope' at one point. The AWAARE collaboration is "working to prevent wandering incidents and deaths within the autism community." Children can wander or elope for many reasons, leading parents and caregivers to live with their 'Eye on the door.'
posted by the man of twists and turns (43 comments total) 14 users marked this as a favorite

 
The man in the new coat had found Robert, still dressed in all of his clothes except his shoes. The boy was cold and scared. His hands and feet were purple and swollen. He had been mauled by insects and spiders and inhabited by chiggers and ticks. His body was covered in dirt, bruises, and scratches, and his head was skinned up. But he was alert and breathing without trouble. The man took off his new hat—a stocking cap—and put it on the boy’s head. He slipped his new gloves over the boy’s bloated hands and wrapped him in the new coat. He gave Robert some water, which he gulped down. Then he called 911.

“I don’t think Robert would have lasted one more day,” his grandmother later said.
posted by the man of twists and turns at 2:47 AM on August 18, 2012 [1 favorite]


I was thinking, they're talking about kids as young as four years old eloping? That's not the definition of "elopement" I was familiar with. I was thinking "run away with a romantic partner" elopement. But in this context "elopement" means to wander away, run off, disappear.
posted by pracowity at 4:00 AM on August 18, 2012


HOW HAD ROBERT BEATEN the odds and, for five days, evaded multiple searches of the area that he was ultimately found in? ... The expert searchers want to know, too. “Our hounds checked this man’s steps,” says Forbes. His story checked out. “We tried to backtrack on the boy but could not find a scent,” he says. “A dozen dogs on the ground ... I’m still baffled by it.”

I am a horrible, cynical person for saying this, but in cases like these, how do they distinguish between child elopement and child abduction? It seems as though it'd be so easy for someone to grab an autistic kid, keep him for a couple days, rough him up a bit, then return carrying him (which wouldn't leave a trail for dogs, would it?) and "find" him in a miraculous (and conveniently solitary) fashion.
posted by Bardolph at 4:20 AM on August 18, 2012


Bardolph - the police should certainly be mentioning that possibility to the physician that treats him afterwards. That physician should certainly be looking for signs that the injuries sustained were inflicted by someone else rather than accidental.
posted by kavasa at 4:42 AM on August 18, 2012


Having seen the autistic boy in my fiancée's family in action, I can tell you this it's entirely typical. One reason--perhaps the main reason--why parents of autistic children are so exhausted is that they can't ever leave them alone, lest they somehow find their way from the front lawn to the highway, or the forest.

Also, I'm surprised Robert was found with his clothes on: many autistic children, including the aforementioned boy, seem to take a clothing-optional view of life, and have been known to show up on neighbors' yards naked as the proverbial jaybird.
posted by Cash4Lead at 5:00 AM on August 18, 2012 [4 favorites]


I remember being 5 or 6 and heading away for a few hours one summer, through valleys, down culverts, in my aunts home town. I was picked up by the cops, brought to the station, given a coke, and allowed to watch astro-boy until my mom came.

Autism is often a question of teaching how to be overwhelmed in spaces where people are not usually overwhelmed. It's kind of hard to explain, but stimulation is so high, noise, interventions, and you just need to get away...

Elopement (a new and kind of terrible word for me) happens when strategies to avoid being overwhelmed by stimulus fail, and the need to avoid stimulus kicks into emergency mode--as adults we figure out ways to say fuck it--but it takes a lot of effort. My friend on the spectrum, plugs his ears with paper in order to go to the movies for example. I have been known to walk out in the middle of a restaurant meal, for 10 or 15 minutes, and go back to see my plate cleared because the waiter thought that i was done. It is also the place where stimming comes in, I think.

Poor, terrified kid--non verbal spectrum folks always have a much harder time working thru the the already fraught problems with translating the outside world. I look forward to a time where there becomes ways to communicate that make this a cultural with its own norms and structures--but it seems a long way off. see this story

oh, and a little note, mute isn't really used anymore, it's considered by many in the autistic community to be offensive, and outdated. Non Verbal seems to be the right word.

Great article though!
posted by PinkMoose at 5:48 AM on August 18, 2012 [16 favorites]


This is exactly why we have double cylinder locks on our doors, and have since my son was very young - it takes a key to open the deadbolt from the *inside* as well as the outside, and even so I can think of least three significant scares we have had where my son got out the front door when nobody was looking.

One time, a little over ten years ago when he was only seven, he got out the front door of the apartment we were living in at the time while I was in the bathroom. I was searching the common areas and calling his name when a neighbor came out -- "Excuse me, are you looking for a little boy? He just walked into my apartment and sat down and started watching tv. He wouldn't say anything..."

In his entire life he has never truly been alone. He might be in another room by himself, but he is never out of earshot and never left unobserved in an unsecured location. Elopement has become less of an issue as he has gotten older, but still remains my greatest fear. He is essentially non verbal (he has a few stock phrases that he uses, but nothing truly expressive). At least at this point we have taught him how to answer a handful of emergency questions like "what is your name?" and "how old are you?" That second one is tricky, because we have to re-teach him the answer every year and it confuses him.

I'm glad this story had a happy ending, so many do not. I have seen a lot of them over the years, and almost all of them are heartbreaking. One in particular from a year or two ago, the boy was found shivering in the snow and although he was still alive when found it was too late - he passed away in the hospital later that day, the effects of the exposure were too much. I think of my own son lost, alone, terrified, and feeling abandoned - not understanding why I am not there to bring him home -- and it absolutely terrifies me.
posted by Lokheed at 7:37 AM on August 18, 2012 [20 favorites]


Oh man. My Aspie son went through a period where he was frequently eloping a couple of years ago. He'd run away from school (and out onto a busy highway) when he got frustrated. (This is the main reason why despite being very verbal and having a gifted-level IQ he is in a self-contained Special Ed class now.) One time he ran out of the house with no warning, when I was cooking dinner. He was missing for a couple of hours. We called 911 and the cops came. One of the worst moments of my entire life was talking to the cops, and they were asking general information type questions, like height, weight, what was he wearing, who's his doctor, who's his dentist. "Dentist?" I thought to myself. "Why would they need to know... oh. Oh."

One reason--perhaps the main reason--why parents of autistic children are so exhausted is that they can't ever leave them alone, lest they somehow find their way from the front lawn to the highway, or the forest.

Yeah, this. My son is almost 10 but requires eyes-on supervision all the time. He hasn't eloped in a year or so (plus we changed our locks to keyed deadbolts on both sides) but he is liable to be dangerous or destructive if left to himself. It is exhausting.
posted by Daily Alice at 7:38 AM on August 18, 2012 [14 favorites]


As the parent of an autistic child, who occasionally wanders, this sort of thing terrifies me. We put up a 5' chain link fence around the back yard, extra locks, I bought alarms for doors. The problem is he's getting older (almost 11) and is now able to defeat many of our precautions. He cannot be left alone - ever. Any time he is out of sight if you can't hear him you have to find him to be sure he didn't leave the house. It's exhausting.

many autistic children, including the aforementioned boy, seem to take a clothing-optional view of life, and have been known to show up on neighbors' yards naked as the proverbial jaybird.


Don't even get me started on this. At least he keeps his underwear on now...
posted by MikeMc at 7:38 AM on August 18, 2012 [5 favorites]


Hugs to all of the parents chiming in here. I have a friend whose 18-year-old autistic son can never be left alone. When he turned 18, she lost the publicly-funded respite worker she used to get. That gives me a second-hand taste of what parents of autistic kids have to deal with. You have my sympathy and respect.
posted by not that girl at 8:16 AM on August 18, 2012 [2 favorites]


This brings to mind the old stories of antisocial hermits up in the hills and children "raised" by wolves. In the old world, many of these young people would never be found, but a few would surely have managed to survive on their own anyway.

It used to be possible to truly escape all the eyes, and the voices, and the confusing contradictory expectations forever.

Just musing. No offense intended to anyone affected.
posted by General Tonic at 9:00 AM on August 18, 2012


11-year-old Nadia Bloom, who suffers from ADD, anxiety, and Asperger’s syndrome, wandered off from home and was lost for four days... How did she spend her time? She took photographs, many of sunlight flashing hotly off water.

I would be totally interested in seeing those photographs, but

"Brunelle said the family has asserted a copyright claim to the pictures and because of that, the police department would not give copies of the photos to the media. However, reporters were allowed to inspect the photos and make their own copies."

posted by redsparkler at 9:38 AM on August 18, 2012


I was thinking, they're talking about kids as young as four years old eloping? That's not the definition of "elopement" I was familiar with. I was thinking "run away with a romantic partner" elopement. But in this context "elopement" means to wander away, run off, disappear.

I used to work for a nonprofit health care publishing company that made publications for nursing homes. I can confirm that the word "elopement" was used frequently to refer to elderly residents with dementia or Alzheimer's wandering offsite from a nursing home.
posted by jonp72 at 10:03 AM on August 18, 2012


Elopement (a new and kind of terrible word for me) happens when strategies to avoid being overwhelmed by stimulus fail, and the need to avoid stimulus kicks into emergency mode--as adults we figure out ways to say fuck it--but it takes a lot of effort.

For the elderly with dementia, elopement works a bit differently. They might not realize why they are in the place they are, which causes them to panic and unearths long ago memories, because their short-term memories of the present are completely gone. One minute, they're in a nursing home. The next minute, they think they have to "go home," because Mom (who's been dead for 50 years) is calling them home for dinner.
posted by jonp72 at 10:07 AM on August 18, 2012


The fake bus stop solution is probably the most bittersweet solution to the nursing home elopements.
posted by redsparkler at 10:15 AM on August 18, 2012 [15 favorites]


11-year-old Nadia Bloom, who suffers from ADD, anxiety, and Asperger’s syndrome, wandered off from home and was lost for four days... How did she spend her time? She took photographs, many of sunlight flashing hotly off water.

I would be totally interested in seeing those photographs...


It looks like they released some of them eventually.
posted by Oliva Porphyria at 10:26 AM on August 18, 2012 [3 favorites]


One of the reasons why autism was incorrectly labelled as "infantile schizophrenia" a while back was that, along with some other superficially similar traits, some adult schizophrenics also tend to migrate a lot. When you talk with the verbal ones organised enough to describe why they wander, they often describe an inner sense of anxiety (sometimes accompanied by command hallucinations to wander) that builds as they stay in a place, making them feel more and more uncomfortable. The act of migrating, of actually using their physical bodies to do something that enacts change in their external environment, seems to sooth them - at least for a while.
posted by meehawl at 10:56 AM on August 18, 2012 [2 favorites]


Interesting article, but the divine miracle angle bothered me. If it was a divine miracle that this child was found, then surely it's a divine miracle that the others did not make it? Strange sense of divinity.
posted by dazed_one at 1:13 PM on August 18, 2012


At least at this point we have taught him how to answer a handful of emergency questions like "what is your name?" and "how old are you?" That second one is tricky, because we have to re-teach him the answer every year and it confuses him.

I'm sure you've considered this, but I wonder if it makes sense to teach him his date of birth instead of how old he his - this way, anyone who is interested can calculate his age. Unless he can't be taught his DOB. I also imagine that he has some kind of card with vital information that he can hand upon questioning, though I suppose he would just lose it. I can't believe that we're in the 21st century and there isn't a solution to such extremely basic problems. Given how prevalent these needs are, perhaps an app could be developed which then is mandatory on all smartphones, and it is able to display the photo of a missing/eloped person; when someone elopes, a push notification can be sent by relatives/guardians, that would notify all phones within a certain area (of likely presence of the eloped person), and any smartphone owner could choose to display the photo, if they see someone who might seem somewhat disoriented - and upon recognition could use the app in a "one button" quick mode to notify the relatives of where they are. Of course, photos of the people in question would have to be kept up to date, which I suppose is a bit of a task, but since all smartphones have cameras these days, it should not be too much of a burden. Or maybe this is impractical. But I feel certain that if we focused some resources on this issue we could do a heck of a lot better than the chaotic situation we have now.
posted by VikingSword at 1:19 PM on August 18, 2012 [2 favorites]


Thanks for tracking those down, Oliva Porphyria!
posted by redsparkler at 3:42 PM on August 18, 2012


I really like Bloom's photo of a bug on water (28 of 32). It is very geometric, with the legs equally spaced, leaving circular indentations in the surface of the water, and the body's larger indentation perfectly centered in the middle. Too bad it came out blurry.
posted by foobaz at 4:55 PM on August 18, 2012


meehawl, can you provide more context for that idea, it sounds kind of fascinating.
posted by PinkMoose at 5:29 PM on August 18, 2012


I'm not officially on the spectrum, but I've had the urge to simply leave and keep going ever since I was a little kid, always when I was overwhelmed - now I get full-blown panic attacks when I'm overwhelmed and avoid a laundry list of situations to keep that urge at bay. I require earplugs in movie theatres to tolerate the experience (I honestly can't figure out how normal people can stand life.) I'm just really grateful I had enough fear/awareness not to do anything really dangerous.

My closest relatives with autism both have "elopement" issues; they're 9 and 10 years old, and the schools have to keep very very close tabs on them (like, an adult devoted exclusively to making sure they don't leave the room/schoolyard/whatever.) I'm just glad they've stopped running away from home (though I don't know for sure what it's taken - in terms of locks, etc. - to accomplish that.)
posted by Fee Phi Faux Phumb I Smell t'Socks o' a Puppetman! at 6:03 PM on August 18, 2012


I'm probably going to get beat up for saying it, but this is exactly the reason why we need some sort of treatment or cure for autism.


My younger brother went through a wandering-off phase, too, and it damn near killed my parents. We lived in terror for about a decade because Younger Bro's particular version of autism can packaged with a fascination--and ability to defeat--locks of all kinds from the time he was about five years old. Combine that with a natural tendency towards mutism, an inability to grasp the concept of danger, a love of hiding, and the fact that we lived in a rural area, and it's a real wonder Younger Bro made it out of his teens without Mother Nature killing him.


We eventually got him to memorize his name, address, and phone #, and be able to recite it back on command, but as is the case for so many others, Younger Bro could not go unwatched for even a second. It was exhausting for all of us to have to devote so much time and attention just to make sure Younger Bro didn't inadvertently wander off and get eaten by bears or otherwise kill himself.
posted by magstheaxe at 6:19 PM on August 18, 2012 [1 favorite]


Then there's the 28-year-old autistic man who somehow survived for 3 weeks in one of the most brutal deserts in North America.
posted by gottabefunky at 6:20 PM on August 18, 2012


I'm sure you've considered this, but I wonder if it makes sense to teach him his date of birth instead of how old he his

The point is for it to be the answer to a question he is likely to be asked in a situation where he needs help. "What is your name? How old are you? What is your school?". It would be unlikely for someone to ask him when he was born.

I am currently toying with a very small and durable USB drive that he could wear as a pendant, and which would have on it a simple text file named EMERGENCY.txt that would contain information about him and emergency contact info. But I don't know if he would keep it on.
posted by Lokheed at 6:21 PM on August 18, 2012


The point is for it to be the answer to a question he is likely to be asked in a situation where he needs help. "What is your name? How old are you? What is your school?". It would be unlikely for someone to ask him when he was born.

Oh, absolutely, I understand. I was just thinking that it wouldn't be a pointless answer:

Q: How old are you?

A: I was born in 1984, July 2nd.

But point taken. The USB is a good idea, though I suppose tags with basic info (like military dog tags) would give the info more immediately without requiring any other interface, but have the disadvantage of not being as easily modifiable. The real issue is how to have him hang onto such a pendant (USB or otherwise). If a USB were to be used, there are other objects that can incorporate a thumbdrive - watches, bracelets etc.. Sometimes people hang onto one kind of object (say, watch) much better than another (pendant around the neck).
posted by VikingSword at 6:41 PM on August 18, 2012 [1 favorite]


Mags:

What you are claiming is genocdial. We do not need a cure for Autism. We need a culture that recognizes neuo-queerness and allows for neuro-diveristy. The solutions positied in the article are one step, there are others.
posted by PinkMoose at 9:26 PM on August 18, 2012


PinkMoose:

What you are claiming is genocdial. We do not need a cure for Autism. We need a culture that recognizes neuo-queerness and allows for neuro-diveristy. The solutions positied in the article are one step, there are others.

The history of the medical sciences are full of horrors. (History, in general, is that way.) There were "treatments" for all manner of conditions that were far, far worse – in hindsight.

But, how can you establish whether someone who is autistic prefers to be autistic unless she is given a chance to live otherwise and then decide whether or not she wants to go back?

Furthermore, does your neuro-queerness include, for example, schizophrenia? Is it a violation of human rights – let's just assume those conventions are useful here – to provide a person who would otherwise die on their own a chance to be able to – at least – survive on their own?

We can debate how choice is established but I don't think it's fair to assume everyone with a condition that makes them incapable of caring for themselves would necessarily prefer to continue in that direction.
posted by noway at 11:43 PM on August 18, 2012


I find it extremely offensive to have someone who is not on the spectrum tell me that curing autism is the way to go, i'm not schizophrenic, and will let their culture determine what they find offensive.
posted by PinkMoose at 7:32 AM on August 19, 2012


We can debate how choice is established but I don't think it's fair to assume everyone with a condition that makes them incapable of caring for themselves would necessarily prefer to continue in that direction.

I find it extremely offensive to have someone who is not on the spectrum tell me that curing autism is the way to go


I will say, as a parent of child on the spectrum, a treatment that would give my son the chance to live even a semi-independent life would be something I doubt we could pass up. We're not going to live forever and one of my greatest fears is what's going to happen to him when we're gone. Being in favor of neuro-diversity is all well and good when you can not only comprehend the term but make decisions regarding your own treatment. Not everyone on the spectrum is as fortunate.
posted by MikeMc at 9:01 AM on August 19, 2012 [5 favorites]


I have an extra lock on my door and a wind chime hung inside so the door hits it when open. All my windows are nailed shut. Also, my son where's a tracking device as part of Project Lighthouse, which lets the sheriff find him.

Nothing takes years off my life like my son disappearing while I'm doing something completely normal like using the bathroom.
posted by FunkyHelix at 11:09 AM on August 19, 2012


Mike

You know, i am sick adn tired of parents making choices for autonomous agents. It's not yr fucking choice here.
posted by PinkMoose at 11:15 AM on August 19, 2012


PinkMoose, I know where you're coming from.
For anyone who is unfamiliar with the Autism Wars and feels like that just came out of nowhere, here are some good resources:

Autistic Self Advocacy Network
The Thinking Person's Guide to Autism
Left Brain Right Brain
posted by Daily Alice at 12:03 PM on August 19, 2012


We need a culture that recognizes neuo-queerness

That's a really offensive usage because

(1) It tries to establish an equality between being autistic and being gay
(2) People who are sufficiently far out on the autism spectrum are incapable of living independently
(3) An unavoidable implication is therefore that if being autistic is like being gay, people who are sufficiently far out on a gayness spectrum must also be incapable of living independently.
(4) Identifying as exclusively homosexual necessarily makes someone as far out on a gayness spectrum is it is logically possible for anyone to be; it is impossible to be more gay than exclusively gay.
(5) Many gay people are exclusively gay.
posted by ROU_Xenophobe at 12:06 PM on August 19, 2012


i didn't say neuro-gay, i said neuro-queer. queer isn't gay.

a) it is making the difference between biological essentalism and the choice of a culture of otherness.
b) that said, we often don't know what people on the autism specturm are capable of, because we have a culture that priotizes parents and families as speakers of autism, instead of autistic kids, and because we do not have a culture that allows for autism to flourish, and because mainstream disability work infantalizes adults.
c) queerness isn't gayness, because queerness recognizes that there are circles of identity and culture, and that identity is liquid.
d) you using the word homosexual is really interesting--because for queer disabled folks, the connections between medically attempting to control sexuality, and medically attempting to control disability are really fucking similar. homosexual sure as hell ain't queer, and for many of us who have extensive histories in medical and pyschatric fields, it is a word that broaches offense.
e) many queer people recognize that opression is inter related.


all of that said--if someone came in this thread, and said--culutrally it's difficult for my glbtq or african american child, i wish to cure them, there would be outrage--but if someone parent cmoes in here and says, i want to cure my autistic son, well, its all elephants and parades isn't it.
posted by PinkMoose at 8:24 PM on August 19, 2012


I'm aware that people on the autistic spectrum are claiming autism as an identity (reminds me of Greg Egan's Distress: see this blog posting for a relevant quote from the book). This sounds like a good thing.

> all of that said--if someone came in this thread, and said--culutrally it's difficult for my glbtq or african american child, i wish to cure them, there would be outrage--

However, I don't think this works as an argument. The difference between changing the sexuality or skin colour of a child and allowing the child to remain prone to running off into the wilderness while unable to fend for themselves is that the problems with the latter aren't what we'd usually call "cultural difficulties", they're just flat out survival problems in any culture. I'll happily stick my neck out and say it's better to "cure" autism to the extent that autistic people are then less likely to end up dead or on the streets (in less enlightened cultures)/in a care home (in more enlightened ones) once their parents are dead. This isn't saying everyone should be the same, however.

> You know, i am sick adn tired of parents making choices for autonomous agents. It's not yr fucking choice here.

Parents of necessity make choices for their children all the time. What else should they do?
posted by pw201 at 6:48 AM on August 20, 2012 [3 favorites]


Lockheed-- have you looked at something like a RoadID? My son wears one on a rubber bracelet, and you can optionally have a link to a website with additional info. The steel tag is also replaceable if contact info changes. (No affiliation, etc.)
posted by fogovonslack at 10:22 AM on August 20, 2012


Mags:

What you are claiming is genocdial. We do not need a cure for Autism. We need a culture that recognizes neuo-queerness and allows for neuro-diveristy. The solutions positied in the article are one step, there are others.
posted by PinkMoose at 12:26 AM


PinkMoose:

Yes, I am perfectly aware that a bunch of high-functioning persons with autism are claiming such things and ignoring the very real and life-threatening aspects of the disorder as it manifests amongst persons who are on the low-functioning end of the spectrum.

My brother's autism prevents him from recognizing common dangerous situations, and for a long time it encouraged him to seek out and place himself directly in harm's way. To be blunt, we were poor, and we lived near railroad tracks for a long time because we couldn't afford to move. My brother developed a fascination with trains, as in "I'll go stand in the middle of the tracks to get a good look at one as it arrives" kind of way. This continued until he was about fifteen or so, and we were able to move to a farm. When reports of black bears in the area surfaced a year or so later, my mother nearly fainted from the fear.

Call me crazy, but I remain convinced that my younger brother probably would not have done this sort of thing but for his autism. Why his autism placing him in front of an oncoming train is not considered genocidal, but my wishing for a cure for the autism (so he can recognize that a freight train bearing down on him at fifty miles an hour is dangerous) is considered genocidal, tells me all I need to know about the "neuro-diversity movement."


I find it extremely offensive to have someone who is not on the spectrum tell me that curing autism is the way to go, i'm not schizophrenic, and will let their culture determine what they find offensive.
posted by PinkMoose at 10:32 AM


I look at an autism cure the way I look at abortions: if you don't want one, don't have one performed on you. But you have absolutely no right to judge someone else who wants and/or needs one, and I'm extremely offended that you think you have that right. It ain't your body and it ain't your life, so you can get over it.


You know, i am sick adn tired of parents making choices for autonomous agents. It's not yr fucking choice here.
posted by PinkMoose at 2:15 PM


Believe me, I would love for my brother be able to make decisions for himself, but the version of autism he has won't let him. My brother's autism prevents him from being autonomous. It does that on the low-functioning end of the spectrum, or haven't you heard? It strips him of free will, prevents him from learning, and keeps him from communicating with anyone around him. It disables him, in other words, and renders him functionally retarded. So his choices by necessity become my choices, now that my parents are out of the picture.

I am sick and tired of high-functioning persons with autism claiming that they understand life on the low-end of the spectrum. Because they fucking don't. If my brother had been allowed to make choices under the influence of his version of autism, he'd've had a closed-casket funeral decades ago.
posted by magstheaxe at 11:53 AM on August 20, 2012 [1 favorite]


Mags:


If yr brother's special interest is in trains, there are ways of working through it, so he could see trains and not stand in the middle of the tracks. I know an enormous amount of people all over the spectrum, and there are ways to process that out. i am terribly sad that you moved to the farm, and yr brother didn't get to see the trains.

I wandered into the woods, I wandered into traffic, I went out in the middle of the nights in neighbourhoods i shouldn't have, I have done things that are incredibly dangerous to pursue my special interests. Fellow autistics have taught me how to pursue those interests, while being safe. Well meaning, patronizing family and friends have tried to stop be from pursuing those interests.

It is not a choice like abortion--it is eliminating a category of people, it is using medical culture in order to destroy a group of people, because you find how they process information inconvient. It is creating a good autistic, who is rewarded by adhering to a culture that refuses their identity and is compliant to authority, and a bad autistic, who is punished because they seek their own autonomy. Eventually social pressure will give way to social nessecessity, and the choices that are made will no longer be offered, and this nascent autistic culture will be destroyed. The pleasure yr brother gets from trains, will be considered a symptom.

There is research being done on a variety of spectrum kids, who have been found to have much more autonomy then they are given credit for, esp. when placed with others of their kind--a responsive community of care deveolps. How many autistic kids does yr brother know, how many does he interact with--if the answer is none, you have refused him his culture because you think you know better, and that is shameful.

The spectrum is not a fucking heirarchy, and the assumption that i know nothing about others on the spectrum is presumptive as fuck.
posted by PinkMoose at 3:56 PM on August 20, 2012


If yr brother's special interest is in trains, there are ways of working through it, so he could see trains and not stand in the middle of the tracks. I know an enormous amount of people all over the spectrum, and there are ways to process that out.

Really? Do tell. We tried everything we could think of. But please, person-who-couldn't-pick-my-brother-out-of-a-line-up, please presume to tell me how you know so much better.


i am terribly sad that you moved to the farm, and yr brother didn't get to see the trains.

As a matter of fact, there were train tracks not too far from the farm as well. By the time my folks moved, apparently my bro had decided that trains might hurt him, probably after our dog was clipped by one. He was content to stand in the yard and watch them from a distance. But please, continue to assume things about my family. Don't let the facts stop you.


I wandered into the woods, I wandered into traffic, I went out in the middle of the nights in neighbourhoods i shouldn't have, I have done things that are incredibly dangerous to pursue my special interests.

Good for you. You do realize that there are people with autism who didn't come back from those sorts of escapades, right? Don't their experiences count for anything? Or is anything that suggests that some forms of autism aren't all sunshine and double rainbows automatically dismissed as invalid?


Fellow autistics have taught me how to pursue those interests, while being safe. Well meaning, patronizing family and friends have tried to stop be from pursuing those interests.

I'm going to go out on a limb here and suggest that your family and friends were probably trying to re-direct your interests because, by your own admission, you were doing incredibly dangerous things in order to pursue your interests, and they were afraid you would maim or kill yourself before anyone could teach you how to pursue them safely. I could be wrong; I'm willing to admit that.

Fortunately, my brother's other interests didn't have the ability to be fatal. We've actively encouraged his interests in music, drawing, dance, gardening, and food/cooking. He outgrew the train thing, but not until we spent a decade gripped in pants-shitting fear.


It is not a choice like abortion--it is eliminating a category of people, it is using medical culture in order to destroy a group of people, because you find how they process information inconvient.

Here's where you and I agree: Death is most certainly inconvenient. Especially to the person that dies.

Curing autism doesn't destroy a category of people any more that me coloring my hair destroys other black women.

What it might do is make some folks not autistic anymore, and frankly I suspect that's what some high-functioning folks fear the most--that a cure will come along, some autistics will take it, go "Holy SHIT this is how it's supposed to be? This is awesome!" and leave them as part of a rapidly shrinking minority. So they try to cast themselves as an oppressed group, and appropriate terms from various civil rights movements (such as your blatant appropriation of the word 'queer' from sexual and gender minorities). Instead of admitting that, hey, maybe there are forms of autism that are majorly problematic for the people that have them, they gloss over or ignore the very real problems at the low-functioning end.

Problem is, low-functioning people like my brother, people who would very obviously benefit from a cure, won't go away. And people like me will help them speak when possible, and will speak for them when they just can't, and they'll insist that the high-functioning people shut up and stop presuming to speak for them.


It is creating a good autistic, who is rewarded by adhering to a culture that refuses their identity and is compliant to authority, and a bad autistic, who is punished because they seek their own autonomy.

I reiterate my previous point: if my brother had been allowed autonomy, there wouldn't have been enough of him left to spread on toast.

Here's the thing that many high-functioning people who are autistic do not seem to get. At the low-functioning end? Autism. Fucking. KILLS. When autism completely disables your ability to recognize danger, then it goes from being an issue of "culture" and "identity" and becomes an issue of "life" and "death". You're just going to have to forgive the caregivers for prioritizing life over autonomy.

I know of a woman whose severely autistic son burned down her house because he suddenly developed a fascination with fire. Left them with no place to live and damn near killed both of them due to smoke inhalation. This is not a personality trait; on the low-end of the spectrum, this disorder can drive indescribably destructive (and self-destructive) behaviors.

Please do not misunderstand me: I want every individual on this planet to have the identity that they want. But the ugly reality is that sometimes, autism gets in the way of that. And there are people in the "neurodiversity movement" that don't want to admit that


Eventually social pressure will give way to social nessecessity, and the choices that are made will no longer be offered, and this nascent autistic culture will be destroyed. The pleasure yr brother gets from trains, will be considered a symptom.

The symptom was not the pleasure he got from trains. The symptom was that Bro could not deduce that standing in front of an oncoming train would result in his death, and other people would have to put themselves at risk to save him from himself.

And I say again my last: I have every reason to believe he would not have taken such risks if he did not have autism. So if the nascent autistic "culture" gets destroyed so my bro can live, and live well, and live with autonomy? Good. Bring it on.


There is research being done on a variety of spectrum kids, who have been found to have much more autonomy then they are given credit for, esp. when placed with others of their kind--a responsive community of care deveolps. How many autistic kids does yr brother know, how many does he interact with--if the answer is none, you have refused him his culture because you think you know better, and that is shameful.

He actually knows and is friends with several other autistic men and women. But you keep right on assuming: you've obviously already made up your mind that me and my family are evil "neurotypicals" committed to keeping him from other people with autism, and that we don't give a shit about my brother, his condition, and the threat it's posed to his life over the years.

The spectrum is not a fucking heirarchy, and the assumption that i know nothing about others on the spectrum is presumptive as fuck.
posted by PinkMoose at 6:56 PM on August 20


And yet you just definitely proved that very thing with your post, a post that was filled with arrogant, wildly inaccurate assumptions about me and my family, and apparently based on some sort of stereotype of evil "neurotypical" people and how we want nothing more than to oppress people with autism.

So yes, I will continue to presume you know nothing about others on the low-functioning end of the spectrum. 'Cause you just showed me that you very clearly don't.
posted by magstheaxe at 7:34 PM on August 20, 2012 [1 favorite]


Let's start this again.

Facts about me.

I am a sexual minority. I am Autistic. i have severe mental health issues. I have actively tried to cure the mental illness. I have not tried to cure the Autism. I think of it like the difference between Deaf and deaf culture. I imagine life for your brother is closer to my life as a depressive, and trying to cure the depression, and not cure the Autism, is a choice--and most likely a hypocritical one. I am also a writer and artist. Taking away the Autism will be taking away how i communicate with the world. I use neuro-queer, because for me, the history are intertwined. I am not the only one who uses it, and it has gained currency. People have tried to train me out of my autism. It was soul destroying, and humilating. It did more harm than good. My friends and family, therapist, GP, psychiatrist, and people at school, now refuse to do so. I think this is a profound moral good.

A few other things:

I have been disrespectful to your brother. I am sorry about that. Truly sorry. When I get on my radical self, I tend to be a complete and utter asshole.

Some Responses:
1) I still think its a problem that you are talking on behalf of your brother. In disability studies circles, it is exceedingly rare still for autistics to talk for autistics--so Deaf people talk for themselves, and CP people talk for themselves, and Blind people talk for themselves, but I have seen maybe once or twice where Autistic people talk to Autistic people for Autistic people. I wonder if this happens more often, then things like wandering off, or dangerous pursuing of special interests will happen less. Can I ask your brother's name, and could you talk to him, and see what he thinks of the article?
2) The hair colour can be changed back. Elimanting Autism cannot be changed back,
3) I have never sat down and talked to my neuro-typical friends about how fearful they have been, or my mother. I should. Thank you for reminding me that there is another side about this.
4) I am totally jell about his drawing and gardening, i cannot do either, esp gardening--totes black thumb.
5) I admitted that about my mental illness. If my depression goes unchecked, I will kill myself. My depression is a fundamental part of who I am. The tension between the important self that emerges from my depression (see Burton for examples) and the destructive quality of it, is one that can be v. toxic. My Autism has resulted in homelessness, under-employment, the previously mentioned pursuing dangerous activities, etc. The tension between the important self that emerges from my autism, and the destructive quality is one that for me, is less toxic--but it is less toxic, because i have fellow Autistics. My brother and I have argued about the depression, but we have not really argued about the Autism. I have to remember if you have met one Autistic, you have met one Autistic.
6) I am really really really glad that your brother has found a group of Autistic people. I don't know if you are American, but that is often the hardest part. I apologise for making assumptions.
7) Can we define low end of the spectrum, because the people I know on it (and that's you know non-verbal people, people who yell all the time, people who rock back and forth, people who have trouble with washroom breaks, people who injure themselves because they hit themselves, people who only repeat the same phrase over and over again) who go from one kind of care, to a more Autism directed self-hood model, have emerged as different people. This is often not the case with everyone.


Thank you for continuing the conversation, even when I have been unclear and unkind
posted by PinkMoose at 10:31 PM on August 20, 2012


I think the whole "high-functioning" vs. "low-functioning" thing is a false dichotomy. I sometimes wish that the phrase "autism spectrum" didn't exist, because it gives the impression of a line with a non-verbal institutionalized person who spends all day rocking in a corner at one end, and Einstein at the other, or something. There are so many axes on which people can have strengths and challenges. Many parents of "low-functioning" autistic people get frustrated with "high-functioning" autistic people who are demanding equal rights. There are many autistic adults who have been deemed "low-functioning" who have turned out to be able to communicate once they were in a more autism-friendly environment. Assistive and augmentive communication devices, typing on keyboards, or even just being among people who are willing to "listen" to what the autistic person is communicating, can make a huge difference for some people. Oftentimes, autistic attempts at communicating fear or discomfort or pain are mistaken for "behaviors" that need to be "extinguished". In the worst case, institutions like the Judge Rotenberg Center are allowed to torture autistics with electric shocks in the name of "treatment". So when autistic people seem to be passionate in their response to discussions of "treatment" and "cures", I know where they're coming from. My life as an NT parent of an autistic child is hard, but his life is harder. I don't want to delete the autism from his life, because it is not separate from him as a person.
posted by Daily Alice at 6:54 AM on August 21, 2012 [1 favorite]


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