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StevieC
topic
08:49:04 AM Feb 18th 2014
edited by 68.32.89.20
Thinking that it may be safe to unlock this page, given that the prevailing consensus has quite firmly coalesced against Autism Speaks, ever since they officially endorsed the Judge Rotenberg Center less than 9 months after said Center's treatment methods were unanimously agreed to constitute torture in a panel held by the UN's special rapporteur on torture. Link showing that Autism Speaks endorsed the JRC Link to a Forbes Magazine article on the report from the UN ruling that the methods used at the JRC constitute torture and would be war-crimes if used on prisoners of war Given the rather damning evidence mentioned above, it is probably safe to say that the article's once-controversial portrayal of Autism Speaks as a poster-child for Condescending Compassion is demonstrably not biased, rendering the alleged reason for locking the page (as described on the administrivia list of locked pages) no-longer-applicable.
Artful
10:20:37 AM Feb 24th 2014
edited by 108.181.13.129
Based on the evidence presented I would concur.

edit: Oh wait, it's you. Ok, I concur to Autism Speaks being problematic. I do NOT agree that you should be permitted to add in your soapboxing comments again, and given that you're the one asking for the article to be unlocked I suspect you'll add them again if given the chance. If you were to do so I would edit it out as irrelevant, and then we'd be back to an edit war.
Klic
topic
03:08:30 PM Sep 24th 2013
Is there any reason why the examples are all male? Could we possibly change one or two of them to female?
Artful
05:40:18 PM Sep 29th 2013
Because the examples were all real children, and all of those children were male.
Terrie
10:12:36 AM Sep 30th 2013
I'm not sure I'm comfortable having examples that include real kids when it's completely unneeded. This isn't a medical journal. We don't need case studies, just hypothetical examples.
Artful
09:08:43 PM Oct 2nd 2013
Doesn't really matter, that was just my reason. Real examples are best since they accurately reflect real practice, and those aren't the real initials. Here's some female examples:

Ex: MJ asks for hugs and kisses from strangers. She is taught to respect personal space and to encouraged to request High-5s instead.

Ex: SW speaks for an extended period on a preferred subject and does not give pauses for others to respond. She is given a check sheet to record each time during a practice conversation she allows others a turn to speak, and is given instruction on how to ask people questions about their interests.
Klic
11:53:00 AM Oct 4th 2013
Could we include one or both of them so that we're not accidentally reenforcing the "All autistic people are male" stereotype?
Artful
topic
05:29:12 AM Feb 16th 2013
Former article sucked balls, replaced. Quoted here for posterity:

Autism is a strange disorder, primarily because there is no consensus on what qualifies someone as an "Autistic" person.

To be more specific, Autism is based on something called the Autism Spectrum Conditions, which is a sliding bar of social disorders. If you hit certain points on the spectrum, then you may have one of the following things:

  1. Autism (social inability, speech delay, highly unusual speech, or absence of speech; can include cognitive disability)
  2. Asperger Syndrome (noticeable social inability, but no obvious speech delay or cognitive disability)
  3. Pervasive Developmental Disorder - Not Otherwise Specified (a catch-all category for anything that doesn't fit into the top two; covers about 65% of the autism spectrum because the current diagnostic categories are only marginally useful)
  4. Rett Syndrome (an X-linked neurological disorder with autism as a primary symptom. Very rare)
  5. Childhood Dis-Integrative Disorder or Heller Syndrome (which involves loss of skills and speech rather than simply not gaining them to begin with; extremely rare)

For a while, this worked out really well and helped determine who was and who wasn't autistic. However, autism is such a broad spectrum that it covers everything from the eccentric engineer who spoke in full sentences by age four, to the fellow who can't use symbolic communication at all and needs an aide 24/7. Awareness campaigns emphasized the small minority of autistics with the most obvious, severe cases, and implied that autistics could not learn or have meaningful lives; often, in an effort to gather more donations, autism "charities" would make autism sound like a fate worse than death (one Autism Speaks spokesperson claimed to have considered killing herself and her child, but to have been prevented by the fact that she had another, normal child).

With autism having such an unrealistically frightening reputation, doctors became afraid that a child's mother would hit them with her purse (or, more realistically, either refuse to believe the diagnosis or else give up on the child) if they were told that the child was "autistic"; so they began using the term "high-functioning" to mean "this person does not fit my stereotype of a low-functioning autistic," i.e., shows ability to learn, has some language or shows signs of using symbolic communication, has a normal or higher IQ, etc.

"High-functioning" is a term that has no official medical definition; it is mostly determined by the perception of the person using the term. If someone says "high-functioning autistic," they may be implying something like, "I know you're autistic, but I don't want to 'lump' you with Those People who can't talk or use the toilet," a statement which of course has serious Unfortunate Implications.

When "high-functioning autistic" is used in a neutral sense, it may be used with the assumption that some criterion that the writer is using is the universal criterion for "high-functioning". For example, a writer may assume that "high-functioning" means being able to speak out loud, or that it means being able to live independently, or that it means not needing help with basic activities of daily living, or that it means someone who has an IQ above some arbitrary level (like mild mental retardation or higher, normal or higher, or bright or higher). There is only one actual assessment of "functioning", the GAF scale (global assessment of functioning), which is a 100-point scale on which most people will score from 70 to 90 and many autistics will score from 20 to 60; but most people who use the term "high-functioning" are not referring to GAF.

"High-functioning" can be used to claim that a person does not deserve assistance or should be capable of doing something which he may not in fact be able to do. It is also used by people trying to discredit autistic self-advocates, to state that "you are high-functioning; therefore you cannot know what it is like to be low-functioning; therefore you are not allowed to demand equal rights for all autistics." This is essentially a way of shutting up autistics: If you can talk, then you're too high-functioning to know what it's "really like"; if you can't, then others must speak for you; therefore, no autistic can ever speak for himself.

For now the term is "High Functioning Autistic", or HFA. When referenced in fiction, it is the justification for the Idiot Savant and the TV Genius as HFA's can be intelligent but also socially bizarre. Can lead to Intelligence Equals Isolation, especially if the HFA develops a preoccupation with science or the arts.

See also The Rain Man.


Artful
05:40:23 AM Feb 16th 2013
Can someone change the links so that Autism is the page title and High Functioning Autism is the alt title? Thanks.
StevieC
10:55:00 AM Jul 18th 2013
The article as it stands now is very biased towards non-autistic perspectives, and is highly dismissive of attempts by autistic people from ALL parts of the autistic spectrum to advocate for themselves. For that reason, I have twice attempted to revise the article to address such concerns. BOTH times my revisions have been removed, in a manner that frankly comes across as trying to silence self-advocating autistics. This is offensive to autistic people, and should not recur. How does it hurt anyone to caution about the traumatic effect some types of therapy have when used without the patient's informed consent?
Artful
11:27:50 AM Jul 18th 2013
Your attempted inclusion was inaccurate. Sensory processing difficulties and sensitivities are well known to interventionists. The goal is to help the person with autism overcome these difficulties through positive reinforcement, and only when they interfere with social functioning. The kid who would only play with green pieces was a real child that I worked with, and this restricted interest was interfering with their ability to play with other children. I've already included a caution that interventions must be designed in consultation with a professional.
Larkmarn
11:28:07 AM Jul 18th 2013
edited by 216.99.32.43
At least part of the problem were that your edits were bad. Your semantics edits were fine but most of the other edits Artful pulled came across as very whiny, editorializing, or were poorly written. And chock full of pointless Bold Inflation.

I know you're trying to get your point across, and that's fine, except that TV Tropes isn't your personal soapbox. If you want to add a section, then it can be discussed on this page. I think it would be okay to mention controversies, but your edits were taking sides on them, which is a nono.
Terrie
11:58:31 AM Jul 18th 2013
What about adding something like:

Many autistic adults and self-advocacy groups have challenged the current status-quo of treatment for individuals with autism, on the grounds that treatment is too often based on making things easier for those who are not autistic, rather than helping autistic individuals maximize their potential. This is closely tied to the neurodiversity movement, which takes the stance that rather than being a medical disease that needs to be "fixed," autism is best understood as a combination of differences in understanding and perception, some disabilities, and social barriers to achievement and acceptance.
Artful
12:14:27 PM Jul 18th 2013
Autism is a disease. The medical definition of "disease" is expansive and includes things that interfere with usual life functions, as autism interferes with communication.

It seems to have eluded some that making things easier for others also makes things easier for oneself. Being able to make a request independently or hold a conversation on a subject that not one of your limited interests is very much in line with maximizing potential.
Terrie
12:54:57 PM Jul 18th 2013
Artful, it's not about your individual view of the issue, any more than it's about Stevie C's individual view of the issue. I don't care if you agree with it. I care if it is an accurate description of those who hold this view. Here's the previous paragraph, with some of your feedback incorporated.

Many autistic adults and self-advocacy groups have challenged the current status-quo of treatment for individuals with autism, on the grounds that treatment is too often based on making things easier for those who are not autistic, rather than helping autistic individuals maximize their potential. Examples include trying to eliminate "stimming" behavior and pushing verbal speech as a measure of success.

This is closely tied to the neurodiversity movement, which takes the stance that rather than being a solely medical disease that needs to be "eliminated," autism is best understood as a combination of some differences in understanding and perception, some disabilities, and some social barriers to achievement and acceptance.

Nocturna
01:10:10 PM Jul 18th 2013
I think your proposed edit looks good, Terrie.
Artful
01:16:24 PM Jul 18th 2013
I'm simply trying to preserve accuracy. Just because someone has an opinion, that doesn't make it valid.

We do try to eliminate stimming (in public at least) since it interferes with communication. You can't talk or listen when you're concentrating on dangling a bit of string. Verbal speech is pushed as a measure of success since that's what most people (including most people with autism!) use. You're characterizing it as an extreme, which is not what is considered good practice; less noticeable stims are encouraged as long as they're functional and alternate communication is used where it maximizes communication potential. I don't think it serves the article to get wrapped up in a bunch of "This is done, except when it's not" sentiments.

The second paragraph seems like edit bait for more users along the lines of Stevie C, but I don't have a problem with it as it is.
Terrie
01:32:19 PM Jul 18th 2013
Artful, the problem is that you seem to be limiting "accuracy" to your view. These criticisms exist! The fact that you don't think they're fair doesn't make them not exist. Plus, you seem to be taking them as an attack on your work with autistic children. Remember that this is a Useful Note on Autism in general, not on a particular mode of therapeutic intervention. Even within the portion of the community that rejects ND viewpoints, there's not 100% agreement on what sort of intervention is the ideal. That why there are both applied behavioral models and relationship-based models of therapy.
Artful
01:36:44 PM Jul 18th 2013
As I said, I'm a professional. I'm aware of these criticisms and my professional stance is that they are not valid. All I can do is exercise my judgement based on my considerable knowledge of the field. If you want to add alternate treatments, I have no problem with that, as long as they have proper scientific support.
Terrie
01:47:28 PM Jul 18th 2013
Atful, I find it very concerning that you seem to want to set yourself up as the expert and declare what is and is not valid information, especially since this is an area where there is disagreement even among the professionals about the efficacy of different interventions. The point of this page should be to provide an overview of the current social views of autism, so that people can better understand how it plays out in media. That needs to include the different, common views, not just your professional opinion.
Artful
02:46:24 PM Jul 18th 2013
Eh... this is part of a modern trend of anti-intellectualism that I find concerning. I am an expert, with years of training and experience. I do know better then most members of the public. I am in a position to say what is and is not valid; we follow the behavioral research journals. Things that appear controversial to people outside a profession are usually less so within the profession; we have a big list of possible treatments in our office and most relationship-based treatments are firmly in the "not yet proven" category. Useful notes should, I think, include the most accurate information possible.
Terrie
02:54:16 PM Jul 18th 2013
Wow, that's kind of rude. You are AN expert, yes. But you're setting yourself up as THE expert. There's a very important difference there.
Nocturna
06:40:43 PM Jul 18th 2013
The controversies exist. I think that's important to note, considering that this page is for informing people who want to use/refer to the topic in their writing about the reality of said topic. This page is not for establishing any given point of view—it's for presenting information about the world as it is, and those controversies are part of the world as it is.
Terrie
07:34:03 PM Jul 18th 2013
edited by 216.99.32.43
Artful, how would you describe the neurodiversity movement and its basis in the sociological model of disability? I'm not interested on describing different treatments. Those are only minimally related to the topic of media tropes. You've talked a lot about what interventions are and are not, but almost nothing about how society conceptualizes autism.
Artful
09:37:01 PM Jul 18th 2013
It would probably be better if it didn't exist. Any second hand information that trickles its way out the the public from a social movement is almost certainly going to be wrong; social movements are not exactly known for rigorous evidence-based approaches. I've found that most of my clients require little more then basic compassion and patience to interact with; after suitable behavior intervention, of course. Having no information is better then having bad information.
Terrie
04:02:48 AM Jul 19th 2013
That wasn't the question. I asked how you would describe the concept, not if you thought it was valid. At this point, I'm not even sure you know what neurodiversity is, or how it relates to the broader rethinking of how disability is viewed.
SeptimusHeap
04:34:42 AM Jul 19th 2013
The neurodiversity movement is most certainly valid. And as someone who is familiar with the surrounding science, the controversy is real. I would just make a short summary of it.
Larkmarn
06:12:49 AM Jul 19th 2013
Yes, we should be neutral, but it would be remiss to not mention existing controversies. We just need to not take sides.
Terrie
06:51:41 AM Jul 19th 2013
Okay, I expanded my description of neurodiversity to give it a bit more context. If anyone feels that I have not described it properly, I'm certainly open to changing it.
Artful
10:18:29 AM Jul 19th 2013
The concept of neurodiversity is that of fear built upon misunderstanding; people have an unreasonable fear about the disease that is autism, and have an unreasonably strong formation-reaction to their own misguided fear. It relies on outmoded and discredited criticisms; modern interventions address the need for autonomy. It overstretches basic truths; taking the basic truth that people should be compassionate and understanding with each other, and stretches it to say people should blithely accept any differences without hesitation. It is egotistical; it relies on people in privileged positions with few difficulties equating themselves with people in troubled positions with many difficulties. It misunderstands the basic social contract by saying it must only flow one way by increasing accommodation; people have to adjust themselves to society, just as society must adjust itself to accommodate people. It fuels the "I can act however I want and no-one can criticize me" attitude that has lead to the slang term "sperg" as an internet insult.

I suppose in many ways this movement is unavoidable. Expecting rational behavior from humans is probably asking too much, and implementation of treatments will always lag behind the science in many places. In so far as the movement advocates for compassion, understanding, and removal of outmoded treatment methods it is correct. However, there is little benefit of replacing one form of irrationality with another in the long run.
Larkmarn
10:46:15 AM Jul 19th 2013
edited by 216.99.32.44
Peachy. I basically agree with you. Doesn't mean the page should have such a slant. We should state the two sides, maybe their arguments, and leave it at that. If people are looking for an in-depth analysis or debate they have to go elsewhere.
SeptimusHeap
10:49:10 AM Jul 19th 2013
^^That paragraph is barely understandable. So I am going to say to leave it off the page.
Artful
11:08:10 AM Jul 19th 2013
I disagree. This is part of the modern view of anti-intellectualism that balance is found by allowing both sides of a controversy to speak and leaving it up to the individual to sort things out. It's the same kind of logic that creationists try to use to get their nonsense taught in schools. Not all controversies are created equal, and even if there is a controversy that doesn't mean both sides have equally strong positions. Writings should have a "slant" towards truth and accuracy.
Terrie
11:59:32 AM Jul 19th 2013
That's not actually a good description of neurodiversity. It is a great description of what neurodiversity's critics think it is, though. So if you want a slant towards truth and accuracy, your description should probably not go on the page.
SeptimusHeap
12:05:30 PM Jul 19th 2013
edited by 70.33.253.44
Gonna have to agree with Terrie. I have never heard of that, and frankly, it sounds way speculative.
Artful
12:21:26 PM Jul 19th 2013
Can you provide a better resource? My impression was gained from reading random supporters' articles.
SeptimusHeap
12:27:20 PM Jul 19th 2013
I honestly don't know. From the articles I've read, it's pretty much a toss-up now.

I still second just documenting the controversy in a short summary. That way, we don't need to stress ourselves. Our articles can endure some factual inaccuracy or two.
Terrie
06:17:41 AM Jul 20th 2013
Artful, you can't understand neurodiversity without understanding it's roots in the disability and psychiatric rights movements. ASAN's policy statements (http://autisticadvocacy.org/policy-advocacy/position-statements/) are a pretty good place to get an overview of the ND movement's goals, but if people are unfamiliar with the princicples of the earlier movements, you can miss some important things. So just a couple notes based on your previous description:

1) "Accommodation needs to go both way." Accommodation does need to go both ways, but people with disabilities will point out that up until very recently it all went one way — the disabled person had to adapt to society, 100%. There is a very ingrained assumption in our culture that the burden is on the non-typical person. Any challenge to this tends to sound extreme, because it's a change from an absolute.

2) Different levels of impairment. Disability rights states that patients/consumers (I'm fine with the first term, but you'll often hear the second) should be active participants and directors of their care *to the maximum extent possible.* I'm emphasizing the last bit, because it gets left out a lot by critics. Very few disabled people are 100% incapable across the board. Just because person A is not able to participate at the same level as person B, that doesn't mean person A can't participate at all.

3) "I can act however I want." That's not ND. That's being an asshole. The fact that some people use it as an excuse to be one does not make ND any more or less valid.

4) While you didn't mention it specifically, I want to mention the one I've seen a lot, which is the idea that accepting differences means not doing anything. That's no more true than accepting a "normal" child means letting them run wild. It's about not using "normal" as the most important measuring stick. For instance, using verbal speech as a measure of success, instead of meaningful two-way communication, would fall under this. Is a person using text-to-speech software somehow less successful than a person who communicates verbally? It's about thinking critically about what's a real impairment vs. what is simply something that is different from the way "normal" people do things.

Artful, I know you've said "But we do that already!" That's great! The problem is that even if you do it, not everyone does. Your own edits admit that some people still use aversives and restraints. Nor has society made the leap to inclusiveness.
Artful
12:01:51 PM Jul 20th 2013
edited by 216.99.32.44
Eh, there's a lot I agree with and a lot of red flags. For example, attempts to legislate increased acceptance for disabilities in the workplace have backfired. ( https://en.wikipedia.org/wiki/Americans_with_Disabilities_Act_of_1990#Criticism )

I also disagree with one of the core concepts - that of the Fallacy of Experiential Knowledge. This is the claim that one cannot properly understand something unless one has experienced it directly. It seems this group is aiming for unearned representation based on a claim of special knowledge. If they want to influence the system, they should get the education and training and go into it instead of trying to force their way in with whining. That's what I did.

Language acquisition tends to be pretty even across the board; generally the coherence of expressed thoughts is about the same across communication methods. Generally speaking, unless there's a physical impairment, vocal communication is going to be just as effective as any other method. There are exceptions, of course. Vocal communication is the most common and widely understood method, so that's what we emphasize.
Terrie
02:32:52 PM Jul 20th 2013
edited by 216.99.32.44
Deleting this comment, because it was rude. Suffice to say, I don't think the data says what you claim about the ADA. We've got something on the page that neutrally describes the existence of the disagreement and that we can all live with. Time for me to step out of the conversation.
Artful
10:19:58 AM Jul 21st 2013
edited by 216.99.32.42
The previous edit was fine, although I would add:

"These processing difficulties can often be reduced in intensity, or even eliminated entirely, through treatment and positive reinforcement."
DCC
topic
10:23:50 AM Dec 7th 2011
This page seems to be taking a side in the feud between autism activist groups. Namely, the side of the high-functioning autistics who can speak for themselves.

I'm not sure if it is really Unfortunate Implications to claim that some autistics cannot speak for themselves. (Like, the ones who never develop language skills.)

I can reverse the Catch-22 at the end of the article. "It is akin to racism for neurotypicals to claim to speak for autists. We can speak for ourselves." "But...my kid is neurologically incapable of learning to speak at all." "Shut up, neurotypical. You have no right to speak for them. So we do things my way. If your kid has any complaints, they're the only ones with the right to speak."

For instance, a lot of activism against searching for a "cure" to autism, often comparing the idea to Nazi genocide. Frankly, if someone is so neuroatypical they literally cannot learn to speak or be toilet trained as adults, maybe a medical treatment would serve them better than increased tolerance for their diversity. (Especially if you're not the one changing their diapers.)

In short—low-functioning autistics do not have the same needs as high-functioning, and are ill-served by treating them as one diagnoses. And even worse served by treating them as one political issue.

TL;DR version: Maybe the name should be changed to "Take That—Autism Speaks and Related Groups".
eedwardgrey3
09:59:27 AM Mar 18th 2012
edited by eedwardgrey3
Suggestion to cut this part or at least reword into something a little more neutral.:

"Awareness campaigns emphasized the small minority of autistics with the most obvious, severe cases, and implied that autistics could not learn or have meaningful lives; often, in an effort to gather more donations, autism "charities" would make autism sound like a fate worse than death (one Autism Speaks spokesperson claimed to have considered killing herself and her child, but to have been prevented by the fact that she had another, normal child).

With autism having such an unrealistically frightening reputation, doctors became afraid that a child's mother would hit them with her purse (or, more realistically, either refuse to believe the diagnosis or else give up on the child."

SeptimusHeap
topic
02:26:53 PM Nov 19th 2011
What does Rett syndrome do on a page about High Functioning Autism? It's almost the reverse of the latter.
back to UsefulNotes/HighFunctioningAutism

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