Autism is a mysterious
and puzzling disease, and children who suffer from having been diagnosed with
autism are equally puzzling and mysterious. But the remarkable actions of Joe
Autie can give us valuable insight into the mind with autism. Autie, 32, is a
person who experiences a label of autism, but has overcome his disability and
managed to do something.
Emily Expert, who has never met Autie but has
met other people with autism, and knows countless people who know people with
autism, runs an organization for family members of children with autism.
According to Expert, “This really remarkable thing that Autie has done can help
us all to understand what goes on inside the mind of a child with autism.”
Many people who make their living
talking about autism agreed that it is extraordinary that Joe Autie has done
something in spite of his handicaps. Experts also agreed that it was definitely
Autie’s autism which caused him to do this particular thing. “We can assume that
because one person with autism did this thing, all people with autism are also
drawn to do this thing,” said Dr. Scientist, an autism researcher. “The question
is – why?”
Of course, because autism is such a mysterious affliction, we
may never know truly know why.
How does Joe Autie feel about his
achievement? “We’re very proud of him,” said his mother.
Emily Expert
agrees, but she also cautioned that even though Autie’s actions do, of course,
give us universal insight into the inner worlds of people with autism, we must
be careful that none of those insights are positive in nature.
“This is
a very inspiring story and has a lot to teach us about people with autism,” said
Expert, “but it’s important to bear in mind that the very fact that Autie
managed to do something is evidence of how high-functioning he is. Many children
with autism never manage to do anything. Autie’s actions are extraordinary and
praiseworthy, but they are the exception, and they definitely don’t reflect well
on autism or people with autism as a group.”
----------
So yeah,
that was my best shot at writing an article about autism! How do you think I
did?
Here's why I'm attempting satire: this last week William LeFever, an
autistic hiker who'd gotten lost in the desert, was found by a rescue team. Articles
about this occurrence all featured a sentence like this: "Authorities
credited autism training at least in part for helping them locate LeFever. One
of the rescuers suggested searching near the river because he learned that those
with autism are often drawn to water, reports The Salt Lake Tribune."
We
can all spot the flaws in that logic, right? We all know that there's not
actually any evidence that autistic people are "drawn to water," right? Everyone
understands that LeFever was by the water not because he's autistic but because
humans need water to survive, right?
Right?
The problem is that
autistic people are considered so exotic and mysterious that you can say pretty
much anything about autism in a news article and get away with it.
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Your spoof article made me laugh. I think that "said his mother" was an especially nice touch.
ReplyDeleteGod. I wish this wasn't true, but it is.
ReplyDeleteThis. Is. Awesome.
ReplyDeleteBRILLIANT
ReplyDeleteWell done! Satire accomplished.
ReplyDeleteHow does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.
ReplyDeleteBEST. FUCKING. LINES. EVER.
Zoe,
ReplyDeleteInteresting how stereotypes are perpetuated in society, as wandering behavior associated with Autism was tied into the stereotype of the young boy that actually did go missing. But, it was a stereotype that, in part, worked to save the boys life, so it's hard to minimize the value of the stereotype in that specific case.
It is part of human nature to find categories in the world, and those in rarer categories are often referred to by stereotypes rather than unique expressions of humanity.
But, while it is easy to criticize this aspect of human nature, it is extremely hard to avoid it whether or not one is part of the spectrum.
A comment often repeated in criticizing parent run organizations, is a criticism of comparing the statistics of autism to those of cancer, diabetes, and pediatric aids, as dehumanizing to autistics.
Interesting though how when that comment is made there isn't much notice of how that statement might make a diabetic individual, an individual diagnosed with cancer, or a member of the AID's community feel, as referred to as something scary or dehumanizing in society as compared to autism.
In the "AutuisticHoya blog" a member of the Aids community finally came forward and expressed how deeply comments like that hurt those in the AIDS community.
If one hasn't seen it, it is a comment worth taking notice of for those that might use a similar statement in the future to criticize the autism speaks organization for using that comparison in statistics.
The article is on Responding to Autism Speaks, and the comment by the individual from the AID's community is the last comment on the page, in response to that article.
[url]http://autistichoya.blogspot.com/2012/07/how-autism-speaks-must-change.html#comment-form[/url]
R/Kate
As another commenter pointed out, not only was the hiker an adult, he wasn't just "wandering": he was on a planned hike and had a lot of backpacking experience, just like lots and lots of non-autistics who aren't labeled as "exhibiting wandering behavior."
DeleteFurther, any experienced hiker knows you go downhill to find water so you won't die of thirst. They'd also know that following a watercourse also is a good way to find people and get home. That has nothing at all to do with autistics allegedly being drawn to water.
And lots and lots of non-autistics could also look at getting lost in the wilderness as an interesting adventure--and consequently stay calm and have a better chance of survival. Particularly people with, y'know, experience in the wilderness?
And I concur that the OP wrote a fantastic Onion-style satire.
BiolArt,
DeleteI think you may be missing the point of the article; the rescue of the young man was not an issue of the young man's hiking experience that motivated law enforcement to search for the young man by the riverside.
The wandering behavior and attraction to water was not a stereotype that the law enforcement officer heard in the general public. It was an evidenced fact provided in a search and rescue class, per the referenced article, in searching for children on the spectrum that have left a safe area and have become lost, which is commonly referred to as wandering behavior that is evidenced as more prevalent among children on the spectrum.
Regardless of whether or not it was applicable in any sense to this young adult person on the spectrum's case, it was in part, the reason why law enforcement in this case, found the young man by the river bank, and saved his life.
Here is the link to the first responder fact sheet that is provided to law enforcement by the National Autism Association; it's a good thing in this case that the information described specific to children, was extended to an experienced adult individual on the spectrum, with hiking experience.
The fact that the young man's life was saved, in part, because of that training, was a salient point in the article, that was worthwhile of recognition, instead of any offense that might be taken with this evidenced associated feature of autism that may have had nothing to do with why this particular young man ended up by the river.
http://awaare.org/docs/FirstResponderBrochure.pdf
R/Kate
Kate, you are missing MY point. I am complaining that the article said the rescuers would not have bothered looking near water except for some weird generalization about autistics being drawn to water.
DeleteThe rescuers SHOULD HAVE been looking near the river from the start, because experienced hikers follow watercourses. But for some reason, nobody bothered to do this until read about autistics and their attraction to water.
Conversely, if the rescuers assume autistics will always be near water, what happens when an autistic who is not an experienced hiker gets lost and doesn't try to find a river? Will they be concentrating on the rivers and letting someone die of thirst somewhere else in the park? What if they get lost in a city, and they actually snuck away to investigate the rail yard or a used bookstore with cats in the window?
Thanks everyone for commenting!
ReplyDeleteKate, the hiker who was rescued recently was a 28-year-old man, not a "young boy."
ReplyDeleteI'm not sure what the connection is between this post and the "autism-AIDS-cancer-diabetes" comparison that Autism Speaks likes to make. I will say that the reason I object to that comparison is because it's clearly meant to scare people by comparing autism to conditions that are potentially fatal, which autism is not. Also, as you point out, using people with AIDS, cancer and diabetes to scare people about autism doesn't decrease the stigma against those conditions - quite the reverse.
Zoe,
DeleteSorry, I did misinterpret the story as a boy instead of a young man however, my point was on stereotypes, as in the referenced article, the stereotype of AIDS that remains is that it is a horrible disease that results in a horrible life, which is neither necessarily the case with AIDS, diabetes, or cancer, as there are advanced treatments that have become available through research.
AIDS, Diabetes and Cancer are all concerns of the human condition, but autism is as well; there are those diagnosed with autism that are more severely impacted than those diagnosed with diabetes, or Aids, and there are cases on record of the cause of death in some individuals diagnosed on the spectrum, as an indirect result of the disorder.
This is the same issue with the disease of Aids, as it is with other diseases that compromise the immune system, where other indirect issues are often the cause of death.
One can go to the other site, and the individual from the aids community that makes the point describes clearly, the way some in the autism community describe the comparison of the statistics with these differing conditions as inhumane, as a description that reinforces older stereotypes of AIDS.
While it does continue a stereotype associated in the wandering associated with autism, per the comment about a body of water, it is benign in comparison to suggesting that a statistical prevalence comparison between aids and autism is inhumane, for those in the Aids community, that might be exposed to comments like that.
R/Kate
We are exactly as unhappy about the AIDS/Cancer/Everything Else comparisons as you are. And I KNOW I am not the only person who has written about how shitty it makes everyone on all sides feel. Though, um, your wording makes it sound kind of like a lot of hierarchy of disability stuff ("I happen to have a high viral load, but I'm not, you know, AUTISTIC. MY MIND IS FINE").
DeleteThough ironic that you're very intense on debating those messages (which are not the subject of the post, and, again, which we all hate too) while at the same time going all out on the autistics-are-all-children narrative.
K,
DeleteI'm all to aware of that point as I am an adult diagnosed with an autism spectrum disorder, however one can appreciate autism speaks effort currently funding a 3 year $825,000 study in part, to determine the number of adults in thegeneral population with autism spectrum disorders, that will likely help dispel the stereotype that has been part of a focus almost entirely on "juvenile" autism by most charitable organizations. Autism Speaks is on the forefront of this issue now, at equal or greater evidenced levels than our government.
Unfortunately, the general news media does the same thing, hopefully that can change in the future, when the scale of the issue among adults in the general population is better understood among all through better methodology used in research efforts.
R/Kate
I've noticed that whenever people complain loudly enough that Autism $peaks doesn't do X, they make some token effort towards X. It isn't enough to make a difference, but it's enough they can point at it and say "Yes, we do X, so shut up now!"
Delete"There are no autistics in leadership positions!" "Yes there are, we have John Elder Robison helping review research grants" (which isn't really leadership, but it sounds impressive)
"You out-competed the local groups that provided support to families, but you don't provide the support these local groups did." "We spent [tiny%] of our funds on grants for a few select recipients, how dare you say we don't support local communities?"
And now, "You're all about the autistic children, what about adults?" so they can now say "We have a 3-year $825,000 study to find the prevalence in the adult population, so stop complaining that we never did anything to help adults."
I love your post, Zoe. This recent incident and article reminds me of the article last fall about an Autistic child who was found after 6 days. His survival was attributed to his autism, of course. http://paulacdurbinwestbyautisticblog.blogspot.com/2011/11/autism-traits-may-have-aided-lost-boy.html
ReplyDeleteYou got it right. I was looking for the share buttons to share it everywhere. I read one of the LeFever articles and I was trying to figure out where the "drawn to water" came from. It was the first time this mom of a 13 year old autistic boy had heard of that.
ReplyDeleteTammy,
DeleteIt's an evidenced fact associated with children on the spectrum, that is part of first responder training provided to law enforcement, per the link below.
http://awaare.org/docs/FirstResponderBrochure.pdf
R/Kate
nice bit of satire. I'll try not to make any inferences about autism's effect on the satire centers of the brain ;-) You should, in all seriousness, submit this to The Onion.
ReplyDeleteI'm with Wiles here - you've got the Onion house style perfectly, and this is just the sort of thing that they're good at.
ReplyDeleteLove this, Zoe. I have nothing against the original news articles wanting to be written about someone disappearing in the wilderness; it becomes problematic when they're like "OMG HE'S AUTISTIC" when that's actually completely irrelevant.
ReplyDeleteLydia,
DeleteI don't see it as irrelevant considering the fact that the young man was identified on the spectrum, and this was in part, what led to his rescue, per the search and rescue training specific to autism, that the law enforcement officer received.
While I agree that it's not likely that it was applicable to this specific individual on the spectrum, never the less, it is part of why his life was saved.
Considering those facts, I personally don't think one can reasonably minimize the significance of these circumstances surrounding this specific incident, in the report that was provided by the media.
The complexity of the spectrum is not well understood, and there will likely not come a day when the general public will fully understand it any more than the general public understands the features of epilepsy other than a Grand Mal seizure.
My spouse has complex partial seizures, and it took decades for my spouse's family, friends, and me to determine that not responding when turning away, was not ignoring us. My spouse learned to adapt as many people do to hide their differences, that are not understood by others.
I couldn't identify my spouse's epilepsy, but on the other hand it took a doctor years later, to identify the fact that I was on the spectrum. It's not too surprising to me that the general public is not better informed.
Now that I know everything about epilepsy, I can spot the type of epilepsy my spouse has instantly in someone else, in a video, but I have still never seen that type of seizure in anyone else in real life.
I don't know if people hide it like my spouse was able to do, or if it is just that rare, in occurrence. I've seen many Grand Mal Seizures; that's never been hard to identify.
My spouse effectively hid epilepsy from me for 8 years. I effectively hid my spectrum condition from my spouse, myself, and others for decades, even when I could not talk as a child until age 4, and with trouble speaking most of my life.
I've been humbled enough to accept the fact that society will never understand the full complexity of the spectrum or many of the issues people have in life; there are too many other things in life going on, to be an expert in everything, no matter what one's capabilities are.
When I think of those statistics of prevalence associated with autism, it would be hard for me to find offense If epilepsy was among the statistics, however it wouldn't be an accurate comparison of prevalence, just as ADHD wouldn't be an accurate comparison because there is so much overlap of those two conditions for children on the spectrum. I can't even estimate the number of seizures my child had in his short life.
R/Kate
Great "article". While reading the recent survival story, I kept wondering what his being autistic had to do with it. Certainly not the part about being drawn to water (duh), butI actually thought that there might be some legitimate connection, like maybe he was obsessed with astronomy and used the stars as a guide, or something...but, no.) I've never read "skinny man survives train crash", or "premenstrual woman bashes robber!" (although that last may be plausible...)
ReplyDeleteHi Kate -
ReplyDeleteSome of the facts asserted in that brochure are backed up with studies, but the part where it says "may be attracted to water" is not backed up with any studies, so I don't think you can call it "evidenced fact."
Also, do you really think that the autism training "led to his rescue?" Do you think that if the rescue team was told a neurotypical hiker was missing, they would NOT have looked near water? I hope not - any search for a hiker missing for weeks would logically have to be concentrated near water, because a hiker going for weeks far from water would be dead.
Zoe,
ReplyDeleteActually, the attraction to water association and autism in search and rescue, is backed up by evidence, through research done by a professional search and rescue expert that has examined factors associated with many groups of individuals, in helping to find those that are lost.
http://www.outsideonline.com/outdoor-adventure/An-Interview-With-Robert-Koester-Professor-Rescue-20120711.html?page=all
The law enforcement officer, per the topic article, stated that his training in search and rescue specific to autism and the related factor of being attracted to water, played a role in the rescue.
That is the bottom line of this specific rescue, regardless of what may or may not have occurred in another situation in regard to potential training associated with search and rescue, for another individual, per guidelines that might have applied in another case.
Are you questioning the integrity, of the law enforcement officer that made the statement associated with the rescue? He was the professional involved that made this decision.
If the information in the autism training did not play a role in the rescue, there would have been no reason at all to mention it, unless the law enforcement officer was lying, which I find pretty hard to believe, since no reputable source has suggested that he is anything but a reputable law enforcement professional.
Again, the profile provided by the training is not necessarily a given for every individual, but the law enforcement officer clearly stated, that the information on the association of autism and attraction to water, is part of what led to the young man's rescue.
R/Kate
Zoe, the quotes from the links below provide more detail for clarity per the circumstances surrounding the incident.
ReplyDeleteIt may make it clearer that this information was official information, provided by the Sheriff's Department, not an opinion or second hand information.
http://fox13now.com/2012/07/12/autistic-man-survives-being-lost-3-weeks-in-escalante-desert/
http://www.foxnews.com/us/2012/07/13/autistic-man-survives-3-week-ordeal-in-utah-desert/
"Gardner took a search and rescue class only a few months ago that dealt with finding people who are autistic, the sheriff’s office said. The deputy said he learned that those with autism are naturally drawn to water, and that if someone who is autistic is missing, that if there is a water source nearby, to look there first."
"Gardner's training in searching for people with autism taught him they are naturally drawn to water, so the helicopter search focused on the Escalante River, the department said."
R/Kate
People need water to live, non-autistic or autistic people need water to live so if anyone is missing that person will need water, any officer will think to look for someone close to water, without water the person would be dead.
DeleteI like this post and I think the autism was mentioned because it's exotic and autistic people are drawn to water for mysterious reasons when missing, not because of the same reason as non-autistic people, we don't actually need water to live, we just like going in the direction of water because of our autism, we don't need to drink water, we just like to exist close to it in our autistic state.
Now, excuse me while I go towards a glass of water because I'm autistic, not because I'm thirsty.
Kate, you need to stop coming to this post and insisting that "autistic people are drawn to water" is an "evidenced fact." To review what "evidenced" means:
DeleteEvidenced means proven by multiple reliable studies.
It does NOT mean:
-someone wrote it in a brochure
-someone said it during a professional training class
-someone claiming to be an expert said it.
There's a lot of people selling all kinds of quackery related to autism, saying that things are "evidenced" because they read it on the internet or heard it from someone selling them a product. It is important that we maintain vigorous standards regarding what is, and is not, evidence for a hypothesis about autism.
Nothing that you have produced so far is "evidence" that autistic people are drawn to water.
We're looking for something like citations from PubMed.
DeleteSaying that the brochure said it, therefore it is evidenced, is circular reasoning. What evidence did the people who wrote the brochure have?
What if I decided to write a brochure saying that all autistics are attracted to used bookstores with cats in the window, just because most of my adult autistic friends and I are? Heck, at least in that case I would've consulted autistics, not just autism parents and psychiatrists.
Your satire utterly rocks, yay!
ReplyDeleteI'm a 55-year-old autistic mother, auntie, teacher and Scout leader, and also an experienced wilderness camper, hiker, rock-climber, boater and skier.
From what I have observed, ALL children are attracted to water, and will 'wander off' to look at it, play with it and get into it whenever they can. This is why drowning is such a major cause of death among children. Autie kids are more prone to just walk out without asking or telling anyone, but when they go outdoors, they do the same thing as any other children: look for something interesting. Water is always interesting.
The behaviors of children wandering aimlessly outdoors don't have anything to do with the behaviors of an experienced adult hiker who deliberately set forth into terrain he knew would be challenging. The reason the statement about "autistics are drawn to water" is offensive is because it implies this very capable adult hiker was a heedless, irresponsible child who had 'wandered'.
Yes, he made a mistake - he continued on after his gear was stolen, when he ought to have turned back. Was that due to autistic perseveration, or to being a cocky young man who figured he was equal to the challenge? A lot of neurotypical guys might have done the same thing. He managed all right, too; better than many might have done in that country.
As a wild young woman, I was admittedly too cocky in the wilderness; took too many chances when I was alone and far from anyone, climbed places I ought not have climbed, and - yes - got myself in trouble with water, both fresh and salt, on a number of scary occasions. If I hadn't been autistic, I probably wouldn't have gone alone, but from the tales I've heard, I was no more xtreme than many of the NT folk.
Whatever the cop learned in his training class, or whether he even thought about that at all before the reporter asked him, it's preposterous to think that any high-desert Search and Rescue wouldn't be searching by the river first thing, no matter who was lost. People naturally tend to go downhill, even when they're not looking for water. He would have left a trail, too; it's not like rain would have washed it away.
Seems like finding him was no difficult task, and he was fine, though hungry, when they found him, so the story had to be made more exciting somehow, and they did it by dragging in his autism - which, really, is no more relevant to the circumstances than his sexual orientation, and also is nobody else's business.
This would make an awesome Onion article.
ReplyDeletewell said.
ReplyDelete