OCD and the nature of autism

[SignOfLazarus]

It was officially subsumed. And there is a difference- the layman might not get that but a PsyD should look past their personal agenda rather than skew what the APA officially termed the move. If you want to say what is acutually happening in practice, that is one thing.

But the change is that it was/has been subsumed, not removed- and your note supports that description of the move/action.

Disappointed. Nice snark, Doug. Only midly hurtful as someone diagnosed with HFA who hangs out with aspies. Diagnosis officially changed specifically from asperger's because of presentation. Change more than once affirmed before DSM-V

bottom line: subsumed does not mean suddenly these people disappear from being able to attain services with a DX, but that's what you are suggesting- perpetuating the misunderstanding of the change.

In practice, it may be individual fault [and often is] if the result is not that individuals are given the new DX that corellates with the DSM V.

But your declaration of "liberation" also assumes that the label of aspergers or autism is some how a tie down or a burden. Only when it's assumed I'm supposed to reject and hate it really. Confusing.

 

[royinpink]

Does the removal of Asperger’s from the DSM pose a problem for those of us who like identifying as Aspies? No. We are now free to build a group identity out from under the shadow of medicalization. The self-diagnosed are now relieved of peer pressure because according to a handful of studies, most of our peers would lose their diagnosis if re-evaluated.

First problem I see here: that group identity and awareness does not exist yet. Yeah, we have a forum or two, great. But people are not aware enough of neurological differences nor are they as clear-cut.

Currently, diagnosis is still used as a 'badge' of group membership, at least to those outside the group (as many of us recognize the problems with diagnosis and fully accept self-diagnosis from one another). Basically, this is the "But you don't LOOK autistic..." thing--people totally not respecting or recognizing 'aspie' or any other neurological difference as legitimate unless it comes with a medical diagnosis. This has consequences, as people refuse to adjust their expectations or treatment if they don't first grant that you are legitimately different.

You might argue that this happens for homosexuality as well--those who refuse to acknowledge that it could be anything other than a conscious choice to 'sin' are essentially doing the same thing, denying that it is a legitimately different way of being. However, I think homosexuality is a good deal easier to comprehend and recognize 'when you see it'. Only those of us who are already well educated about autism can say we recognize that when we see it with anything like the same clarity. Legitimacy and recognition aren't easy in either case, but it won't happen at all for autism unless people stop 'wearing an NT mask' and start educating people about our differences.

Second problem: There is no clear-cut line between the former Asperger's and the current ASD.

You've really simplified this by saying that "most of our peers would lose their diagnosis." In reality, the studies aren't even consistent with one another. I've seen everything from a study suggesting only 28% of aspies and 25% of those with PDD-NOS would classify as ASD to others suggesting that we'd mostly stay under the autism spectrum label, with even 90% of those with PDD-NOS being re-diagnosed with ASD!

What this tells us is that scientifically, they can't properly distinguish us based on our behavior (yet, or probably ever, as I think it's the wrong way to go about it). And practically, anyone in the aspie or PDD-NOS category could end up with a totally mixed bag of diagnoses depending on the clinician they see. This leads to misunderstanding as well as division.

What diagnoses am I talking about?

• Social Pragmatic Communication Disorder (This is new in the DSM 5 and the one I was first diagnosed with. Believe me, it did not put my mind at ease. Everyone--but aspies especially--needs certainty, needs to know why we are the way we are, and mislabelling us does not provide that. This one takes you off the autism spectrum for having the core symptoms of ASD: the social deficits)
• ASD (of course, some will still end up here, and this one is a bit questionable as well--why are all the social and communication deficits being lumped together under the DSM 5, when they are different neurologically?)
• Oppositional Defiant Disorder or others in the category disruptive, impulse-control, and conduct disorders
  • I'm just gonna quote Temple Grandin on these: "First, as a biologist, I find just about this whole diagnostic category scientifically suspect. The category includes six diagnoses. As far as I can see, only one has any basis in science: intermittent explosive disorder. Neuroimaging shows us that if you lack top-down control from the frontal cortex to the amygdala, you'll be prone to outburts that will get you fired or arrested. But as for the other diagnoses in the ... category? I smell a strong case of 'If we label them that, then we don't have to give them ASD services and we can just let the police deal with them.' The DSM might as well call this category Throw 'Em in Jail.
• Intellectual Developmental Disorder

I feel I should also mention Pathological Demand Avoidance, which previously had fallen under PDD-NOS and was recognized to be similar to the female presentation of Asperger's or HFA, as it comes with many of the same ASD issues (it's high anxiety that leads to the demand avoidance), has higher social functioning and imagination, and has a gender ratio of 1:1. Just beginning to be understood, and now thrown out. Are these people going to feel they can join in the aspie group? Will they feel the same identity? How will they be catered for?

There are probably more I'm not familiar with, but I'm trying to leave off the common comorbids--ADHD, anxiety, dyslexia, depression, etc. The problems with these are well-known: people, often females or atypical autistics, get diagnosed with only the comorbid while the autism is missed. Then treatment proceeds without recognizing the underlying cause of the issues they're having.

Treatment for anxiety, for instance, without understanding ASD presumes the person is socially unimpaired and their fear is simply irrational. This leads to unproductive treatment and people with undiagnosed autism feeling like they are somehow broken and uncurable. There needs to be much greater awareness of neurological difference before we leave people to get treatment for comorbids alone.

Anyway, I don't think having a great big mess in psychiatry is going to help us get the recognition and understanding we need. Don't assume that everyone with the Asperger's label is able to excel in university or in work. There's a reason for that 85% under/unemployed figure that floats around...

Does the removal of Asperger’s from the DSM pose a problem for those of us who need mental health services? No. Asperger’s-related problems of daily living that affect our psychological well-being can still be addressed in therapy without the label. So can co-morbid conditions. People whose symptoms are severe enough to warrant a specialized diagnostic label will be accommodated under Autism Spectrum Disorder or Social (Pragmatic) Communication Disorder.

If they only have clinically significant social deficits and are diagnosed with SCD, this is not currently protected or covered by insurance in the same way as ASD is. Besides that, if the research is any indication, clinicians disagree about all of these. If clinicians simply can't figure out why they're having problems, then they get no protection at all. This is a dangerous place to be.

Does it pose a problem for those of us who have impairments that require special accommodation? Yes. We have to figure that out. Nobody said this would be easy. Gays still have struggles in the workplace, too.

Gays have struggles in the workplace due to others' perceptions. I have struggles in the workplace due to high anxiety, OCD, executive functioning deficits, and social deficits. These are two different things, and I think that has consequences.

I have to sleep, so I won't be able to finish all of this tonight. A few quick comments:

Does it pose a problem for those of us who identify as autistic as well as with Asperger’s? Yes. But a growing body of research suggests we’re biologically distinct anyway. Maybe it’s time we consciously reframe Asperger’s.

Yes, but I think the growing body of research doesn't suggest that it's only Asperger's/autism that are biologically distinct but that many of the different symptoms that have been associated with autism are biologically distinct.

If these are all lumped together under ASD, many research studies will continue to use that as a category rather than investigating the differences. So yes, it does present a problem for research.

 

[Egyptian]

Royinpink, what you wrote to me was fabulous. What you didn’t know is that what you were answering wasn’t my perspective. My statements were all things I’ve seen said by Asperger’s and autism self-advocates online. I strung them together and made them into one obviously faulty perspective to provoke some thought. I added personal touches to make it believable. It’s true that I am gay, have a PsyD, and was just denied a diagnosis. My background did help me understand why my self-assessment didn’t match my doctor’s finding. It also enabled me to still accept without question that I do have Asperger’s.

What follows is what I personally believe.

The current messaging from self-advocates is alarmingly undisciplined and disjointed. You might have noticed that many of the ideas in my post were in direct conflict with Scott in the video, which demonstrates how far out of sync the spectrum self-advocacy community presently is. Many of the views I incorporated even suggest that we should abandon some of our own! The fact that these young people are speaking so publicly with no sign of a serious attempt to organize is terrifying to me. They aren’t suggesting actionable solutions. They’re just spewing opinions to anyone who will listen. Like Nadador said in one of his responses, ‘This is not how meaningful change will be made.’

Currently, diagnosis is still used as a 'badge' of group membership, at least to those outside the group (as many of us recognize the problems with diagnosis and fully accept self-diagnosis from one another). Basically, this is the "But you don't LOOK autistic..." thing--people totally not respecting or recognizing 'aspie' or any other neurological difference as legitimate unless it comes with a medical diagnosis. This has consequences, as people refuse to adjust their expectations or treatment if they don't first grant that you are legitimately different.

Exactly. ASD self-advocates like Scott in the YouTube video aren’t thinking this through well at all. They want autism spectrum disorders to be de-medicalized but don’t appear to realize there are a number of steps that need to precede this. If you don’t take a few years to build a community identity, consensus, a plan, awareness, and momentum, the call for de-medicalization is a call for spectrum community Armageddon. These well-intentioned pseudo-activists are producing videos and writing blogs but they’re not being remotely strategic. I’ve been a gay rights activist for 37 years. I’ve seen what a smart change movement can accomplish. The way self-advocates are going about this is all wrong. Organize first. Messaging comes later.

Second problem: There is no clear-cut line between the former Asperger's and the current ASD.

You've really simplified this by saying that "most of our peers would lose their diagnosis." In reality, the studies aren't even consistent with one another.

I’d be a much happier Aspie if you were making videos instead of Scott and company. This whole section was beautifully argued.

Of course studies projecting the impact of the DSM change aren’t consistent. They’re guesswork. I hate the change but it’s too soon to know what the real effects will be. It’s only been two years since the DSM-V was released. We have to take a ‘wait and see’ posture. I know of others like myself who are certain they have Asperger’s but have been denied diagnosis under the new umbrella designation. Right now those cases are just anecdotal, and there’s always the possibility that we wouldn’t have been confirmed under the old criteria. Once there is hard data and provider-consumer feedback on all this, the issue will possibly be revisited. We have to let the system take time to work. If we want to start a movement in the meantime this DSM issue would be better left on the back burner until we see what happens. Building a solid community identity and developing a collective strategy for raising awareness is what’s called for right now, not puking our individual opinions into cyberspace. We have to educate the pros if we ever want an accurate picture of who we are. These are serious people. It will take strategic cooperation and preparation. I say again, self-advocates like Scott are going about it all wrong.

You wrote something I really liked:

What this tells us is that scientifically, they can't properly distinguish us based on our behavior (yet, or probably ever, as I think it's the wrong way to go about it). And practically, anyone in the aspie or PDD-NOS category could end up with a totally mixed bag of diagnoses depending on the clinician they see. This leads to misunderstanding as well as division.

Bingo! In short, we aren’t anywhere near ready to be pushing for de-medicalization of autism. It has to be better understood first.

Yes, but I think the growing body of research doesn't suggest that it's only Asperger's/autism that are biologically distinct but that many of the different symptoms that have been associated with autism are biologically distinct.

If these are all lumped together under ASD, many research studies will continue to use that as a category rather than investigating the differences. So yes, it does present a problem for research.

You’re dead right. See my comment above about needing better understanding.

Dr. Susan Swedo and the DSM-V Neurodevelopmental Disorders Work Group made a lousy decision that was more influenced by special interest groups and government agencies than emerging science.

The correct response to this is a dedicated effort to organize the autism spectrum community so we can be a formidable force for positive change. As a psychologist and social activist I am distressed by the lack of progress in this area. I place and the blame squarely at the feet of self-advocates who care more about telling us what they think than learning what they should do.

I hope I’ve saved you the trouble of typing out the rest of your well-informed responses. I really do apologize for getting your goat.

A last word, about the comparison between homosexuals and autistics. I have seen it often, maybe because there are so many LGBT people on the spectrum. You touched on some of this subject in your response. There are enough similarities that the gay rights movement wouldn’t be a bad one to study and model from. It’s definitely contemporary enough. Caution must be exercised, however. When comparisons get too specific, the analogy breaks down just as it does when gay activists get careless drawing parallels with blacks and the American Civil Rights Movement. Every group is unique.

Thanks to all contributors for a fantastic thread. Apologies to Sign of Lazarus for feathers ruffled. Eek, though. You do get touchy. Slithytoves, how badly did I scare you? I see you still managed to 'like' my post!

 

[tachyon]

The dreaded freeze-up, brain-fog, or intense fatigue when working on creative projects, or a new goal such as as project at home, or a challenging social issue: for me, this has only recently had any light shed, meaning any positive progress, any new confidence. I keep working on a painting, for example, and when it hits that junction where usually my mind says, "it's wrecked", now, I keep going anyway. Perhaps this will lead to no paintings selling, and a giant bonfire in a year or two.

Please, I beg you - no bonfire!
I love looking at all your paintings & would love to buy one in particular.

I might be missing something, but it seems to me that from reading posts on this thread that people think that a therapist can 'cure' us of co-morbid 'disorders' such as OCD. I don't think that it's possible for somebody who does not have the same wiring as I do to even understand how I think, let alone advise me how to 'fix' it. It ain't fixable!

I have been living for decades with being a perfectionist (takes me about 30 mins per post triple-checking everything ) and would not be me if that changed. I understand that I have some serious faults (when compared to the majority), but they define me and don't want to change them and will accept the difficulties that accompany that acceptance because I believe that is easier to live with than attempting the impossible (changing myself). I accepted years ago (before diagnosis) that I needed to change some of my social behaviour, but I see that as a much easier option than actual change (which I see as impossible). People in my social circle appear to be much happier with the new interface & while I still like to interact, I do quickly grow tired of portraying my (now consciously) altered behaviour.

 

[watersprite]

Please, I beg you - no bonfire!
I love looking at all your paintings & would love to buy one in particular.

I might be missing something, but it seems to me that from reading posts on this thread that people think that a therapist can 'cure' us of co-morbid 'disorders' such as OCD. I don't think that it's possible for somebody who does not have the same wiring as I do to even understand how I think, let alone advise me how to 'fix' it. It ain't fixable!

I have been living for decades with being a perfectionist (takes me about 30 mins per post triple-checking everything ) and would not be me if that changed. I understand that I have some serious faults (when compared to the majority), but they define me and don't want to change them and will accept the difficulties that accompany that acceptance because I believe that is easier to live with than attempting the impossible (changing myself). I accepted years ago (before diagnosis) that I needed to change some of my social behaviour, but I see that as a much easier option than actual change (which I see as impossible). People in my social circle appear to be much happier with the new interface & while I still like to interact, I do quickly grow tired of portraying my (now consciously) altered behaviour.

If you would like to buy something, that would help me out right now. A lot. This circles back to what I've been thinking about. (And what's talked about in the Neanderthal thread)
I made - with lots of thought - a decision and then a move that was for the benefit of one importsnt part of me, the creative. How I define that is a little different than the standard accepted definition. And another topic.

Now that of course has changed everything and I must pursue the painting or risk not living authentically, which would be the end of me. I literally have no people in my social circle. So I am building - a portfolio - and hoping that the my actions are mostly right.

Therapists can often smooth over but they don't have erasers. Part of my definition of creativity is using one's own mind to find a way through one's comorbids. A therapist can be part of that journey. But I have problems with letting others tell me how to fix things especially me, until I process all the information that I think I need in my own way. I am very stubborn about this reality, in fact one could say obsessed.

 

[tachyon]

If you would like to buy something, that would help me out right now. A lot. This circles back to what I've been thinking about. (And what's talked about in the Neanderthal thread)
I made - with lots of thought - a decision and then a move that was for the benefit of one importsnt part of me, the creative. How I define that is a little different than the standard accepted definition. And another topic.

Now that of course has changed everything and I must pursue the painting or risk not living authentically, which would be the end of me. I literally have no people in my social circle. So I am building - a portfolio - and hoping that the my actions are mostly right.

Therapists can often smooth over but they don't have erasers. Part of my definition of creativity is using one's own mind to find a way through one's comorbids. A therapist can be part of that journey. But I have problems with letting others tell me how to fix things especially me, until I process all the information that I think I need in my own way. I am very stubborn about this reality, in fact one could say obsessed.

I see myself as basically unfixable (in a fundamental sense).
It would be nice to think that the 99% would love to let me in on what is really going on, but I'm not holding my breath waiting for that to happen.

 

[watersprite]

I see myself as basically unfixable (in a fundamental sense).
It would be nice to think that the 99% would love to let me in what is really going on, but I'm not holding my breath waiting for that to happen.

Explain further please. Breathing is good.

 

[tachyon]

Explain further please. Breathing is good.

Haha..
Even though I obsessively check my post, I still missed a word that perhaps altered the meaning.
Just an expression meaning that I don't think that it is ever going to happen.
But I do see myself as being 'unfixable' in society's terms & frankly don't care any more.

 

[watersprite]

Haha..
Even though I obsessively check my post, I still missed a word that perhaps altered the meaning.
Just an expression meaning that I don't think that it is ever going to happen.
But I do see myself as being 'unfixable' in society's terms & frankly don't care any more.

Thank you.
This is, in my opinion, a Good Thing, since society and me have never been in anything near an agreement.
Apologies royinpink for getting off on side-tangent.

 

[SignOfLazarus]

Royinpink, what you wrote to me was fabulous. What you didn’t know is that what you were answering wasn’t my perspective. My statements were all things I’ve seen said by Asperger’s and autism self-advocates online. I strung them together and made them into one obviously faulty perspective to provoke some thought.

...apologies to Sign of Lazarus for feathers ruffled. Eek, though. You do get touchy.

Heh. Darn right- the first bit I quoted here suggests that was kind of the point. You used the word provoked and strutted your degree around- the reason I got my feathers so ruffled. Had you not pushed the expertise card so much I likely wouldn't have pushed back as I did.

I noted when you initially made an intro post. It's not like I thought you were a total loss by what you wrote here. When that's the case I don't bother responding at all.
If you are attempting to provoke thought and lively conversation [which I think was also part of it] you can't hope to predict the results. I can't know you were masquerading, dude.

You had that information, but I didn't, so no getting on my case about being touchy when you were misrepresenting. You knew you were playing but I thought you were saying some really absurd things and being hurtful, so I think we are even at this point. ;]

ETA: TL; DR ...I'm not going to pretend that under a lot of my lion rawrs and craziness part of me isn't incredibly sensitive- I totally am. But also, hi, typical of autism: we expect things to be a certain way. When I see someone behaving in a way that totally challenges my expectations in addition it's like a double-whammy.
I'M A FRAGILE FLOWER! ...who completely overreacts sometimes.

Still... it's not nice to play with people. Dont' do it please. <3

 

[Slithytoves]

Slithytoves, how badly did I scare you? I see you still managed to 'like' my post!

Pretty badly, TYVM. I did like your post. I didn't agree with most of it, but I knew it was going to get some interesting feedback and thought it was a good addition to the conversation. You weren't going to get a reply here from me, though. I wasn't about to touch that thing until I knew what you were really on about. It didn't jibe with what I know to be your principles.

I agree with everything you said in your REAL response. Jerk.

 

[royinpink]

Royinpink, what you wrote to me was fabulous. What you didn’t know is that what you were answering wasn’t my perspective. My statements were all things I’ve seen said by Asperger’s and autism self-advocates online.

Hah, good one. Thanks for the compliments. Apparently I write better when I've got an axe to grind? Hm.

There are two things I still think I ought to address...one has to do with low-functioning autism, and the other with self-advocates.

The correct response to this is a dedicated effort to organize the autism spectrum community so we can be a formidable force for positive change. As a psychologist and social activist I am distressed by the lack of progress in this area. I place and the blame squarely at the feet of self-advocates who care more about telling us what they think than learning what they should do.

When I wrote the OP, I really was just coming at the video looking for different ways of understanding OCD and autism, with no political context. I watched it as one person searching for understanding examining another's speculations (and this video seemed mostly speculative to me), on a personal recommendation. It's been interesting and at times eye-opening to hear from those of you more aware of self-advocates. I've only been reading about this stuff since I started pursuing diagnosis a year ago.

However, I still feel a bit uneasy blaming our problems on others espousing their opinions. 'Be the change you want to see' and all that. How do we start organizing? If I'm not doing it myself, I can hardly fault them for not doing it (unless they're being truly hypocritical).

A personal sidenote: I may be having to move back home from living abroad. I haven't been back since I got my diagnosis, and so before, I never took much notice of what my brother did...suffice it to say, he has contacts with a lot of people who run autism services or legislate for autism services in my state. There has got to be something I can do with that. What, I'm not quite sure, though.

I asked my boyfriend who just researched more than I know about the neurodiversity 'movement' for a paper he wrote (he's getting a law degree) what he saw as the problems, and he said (among other things, and paraphrasing), "Be more inclusive. Use the strengths of everyone with neurodevelopmental conditions." Speaking of being inclusive...

Does it pose a problem for those of us who identify as autistic as well as with Asperger’s? Yes. But a growing body of research suggests we’re biologically distinct anyway. Maybe it’s time we consciously reframe Asperger’s.

I realize you were not being serious here, but I've seen similar things enough from people who were being serious that I feel the need to say something. So, this response isn't really to you but to them. Apologies.

"Low-functioning" autistics are as much in need of advocacy as high-functioning ones. People assume low-functioning means stupid, but that correlation simply doesn't hold. Michelle Dawson was responsible for testing autistics using Raven's Progressive Matrices to demonstrate that their IQ was much higher than using the Weschler's Scale (an average of 30 points higher, where non-autistics showed no difference). (Comparison to Asperger's here if anyone is interested)

People also grant that low-functioning autism should be cured, but not everyone who falls into that category would welcome a cure, and some feel autism is just as attached to their identity. Amanda Baggs made news some years ago for creating advocacy videos despite being nonverbal. In an old Scientific American article, the nonverbal autistic Tito Mukhopadhyay responded to "Would you like to be normal?" with "Why should I be Dick and not Tito?"

I'm not saying they don't face a lot more difficulties or that all low-functioning autistics would be as comfortable with their identity as Tito (some clearly aren't), only that we shouldn't make assumptions or create divisions. Hell, there is advocacy for Down's Syndrome, and they do have intellectual deficits--that has nothing to do with degree of suffering or worth as a person. I won't embed this video because it is getting a bit tangential, but it shows the humanity of those with DS. When asked if it was hard to be different, the man they interviewed responded, "It felt great. I feel powerful." If only we were all so accepting.

 

[royinpink]

I might be missing something, but it seems to me that from reading posts on this thread that people think that a therapist can 'cure' us of co-morbid 'disorders' such as OCD. I don't think that it's possible for somebody who does not have the same wiring as I do to even understand how I think, let alone advise me how to 'fix' it. It ain't fixable!

Treat is not the same as cure. For instance, I see a therapist partly for my anxiety, and although she recommended medication, she says meds will never be able to get rid of my anxiety without sedating or numbing me, only take the edge off. She's never going to 'cure' me of anxiety. But she can help me manage it.

I think the suggestion was only that when we experience negative symptoms, they are often associated with a comorbid disorder that can be treated as such. However, I totally agree that that must be done with knowledge of how your brain processes things, possibly by a specialist in Asperger's or ASD.

 

[AsheSkyler]

I'M A FRAGILE FLOWER! ...who completely overreacts sometimes.

So am I. You're not alone. But at least we have an awesome mascot.

 

[Slithytoves]

I’ve been distracted by other things for the last two days, but I didn’t want to leave this hanging. You’ve put so much effort into your responses!

Thanks for the heads up. Now I don't have to worry if I was too boring or stupid

Hahahaha! I don't mean to act as Nadador's personal secretary, but I had a feeling you'd wonder if he didn't respond. I usually don't know his schedule but he happened to email me about something just before he left. I do know he's rarely home/online between March and October. I wish I had his life. I have little else to do BUT be home/online.

I definitely agree with you guys if what you want is to support a stronger social movement. I just don't think that should come at the cost of censoring vloggers. If we want organizations, we need to work on building them, not policing our members on how they speak (unless they are truly creating division, intolerance, and violence, e.g. if we supported NT-bashing.). I worry someday something out of my mouth will sound like this vlogger and I'll get shouted down, haha.

With such an organization, also, there could be an authority-granting 'backer' to the videos or messages we wanted to put out, which would make him look like the independent vlogger he is rather than being a lone representative of the group.

And here I was just thinking you would be a great vlogger yourself, like Egyptian said. I'm sure your videos would be spot-on, message-wise. I don't think self-advocate vloggers and bloggers should be censored either. Far from it. People with ASDs have been silent (or spoken for by the wrong people) long enough.

On the other side, about an organization and authority-granting. A while back when I was researching Nadador's aforementioned nonprofit project, I read a study from The Stanford Social Innovation Review about the changing landscape of the social justice sector. Legacy organizations are having to adapt to the different expectations of younger Gen Exers and Millennials, who aren't as friendly as their elders to top-down, traditional social justice organizations. Younger advocates want more collaboration and independence of action. They have become very confident in their own methods, especially independent use of social media, for better or for worse. That was part of what turned off Nadador's prospective partner and derailed his project. He'd connected with an ideal high-profile backer; a celebrity with Asperger's, excellent credibility, mass inter-generational appeal and a boatload of cash. Their talks broke down when the would-be partner thought too long about the difficulties of centralizing a movement that had already left the gate via social media. He said it would be too much like "herding cats". This was depressing to me for what I said here about the lack of big-fish advocates and the need for financial capital. The folks who have the real muscle to put behind this cause may all think like Nadador's guy did. That generation might just not feel up to the complete change of mindset required to make this a well-organized movement that could actually get traction.

I appreciate your perspective...I started wondering more about the problems of this even as I wrote. Originally, I had heard people explain their aversion to PFL as (to paraphrase) "To me, 'person with autism' is like saying 'person with female-ness,'" and that really brought the point home to me in terms of why Asperger's/autism is part of identity. I had kind of disregarded the specific terms used before, it matters more to me what is meant than how it is said. How people label it doesn't change my relationship to Asperger's.

But the implication of PFL is that somehow the condition that comes at the end is distanced from the person--that can be because it is literally external, or because it has a negative connotation we want to distance ourselves from. For mental illness or physical disability, the negative implication is that these conditions make one somehow 'less' or 'unhealthy', even without anyone calling you crazy, just in the terms illness and disability themselves.

Yeah, I understand the reasoning. It's rooted in the Sapir-Whorf Hypothesis, that linguistic usage influences thought, and was adopted in the late 1980s by some heavyweight advocacy groups. It obviously caught fire, at least among activists, doctors and other "helping professionals". Then came scorching criticism from sociologists like C. Edwin Vaughan:

"...The awkwardness of the preferred language focuses on the disability in a new and potentially negative way. In common usage positive pronouns usually precede nouns. We do not say, "people who are beautiful," "people who are handsome," "people who are intelligent," etc. Under the guise of the preferred language crusade, we have focused on disability in an ungainly new way but have done nothing to educate anyone or change anyone's attitudes."

"In interaction with others, disabilities are almost never ignored…If we are going to expend this concentrated effort, why not launch a broader-based, more substantive crusade which would change images and ideas about conditions that are sometimes frightening and seldom well understood? For example, why not work on changing the connotations of what it means to be blind--to challenge old understandings with new insights about blindness?"

"Some individuals and groups of individuals wish to name themselves (or at least not have new labels, preferred usage, created for them by experts who would do them good.) So why the current people-first language crusade? Why not respect the wishes and diversity of many directly involved individuals and consumer groups? Is this not in part what empowerment is about?"

I’m curious to read your responses to the above.

Vaughan also discovered in his own research and by the research of others than only about half of people with disabilities were adopting people-first language at all, or thought that doing it would make any difference. This reminds me of the whole "Native American" thing. Most American Indians still call themselves Indians (or nowadays, the very cool "NDNZ"). Before the Smithsonian Institute named its Museum of the American Indian, it surveyed the actual AI community and found that name was their overwhelming preference. Sorry if this digression is a drag. I just thought you might find it interesting.

However, the traits of ASD--if we get away from the diagnostic manual and look at the actual experienced traits of autism--are not wholly negative.

This may be part of why the first groups to reject FPL were the blind and deaf communities and their representative organizations. Blind and Deaf cultures have long embraced the positive aspects of their conditions and many are proud of their difference. But in recent years, more and more people with conditions that society calls “disabilities” are owning them more and seeing their advantages. The Internet and communities similar to this one are certainly helping. The ability to connect more easily with others like themselves an engage in self-advocacy is allowing for the development of group identity and social culture. As this increases, support for PFL decreases. I learned quite a lot about this in a social work course on disabilities. I found it very informative.

Back to the identity subject: Of course, identity is also social identity, which is why we focus on race, gender, etc. when we talk about identity, and another aspect of why some might prefer PFL for disabilities but not for autism. I never quite got how those are supposed to be more essential to my identity than my personality, but I guess it's true that I do not know what it would be like to be a man. Lol.

Sociologist George A. Appleby’s book, Diversity, Oppression, and Social Functioning describes the special significance of "social identity" to oppressed groups. In one section, he suggests that people who have internalized society’s oppression of the identity groups to which they belong are more likely to view personal characteristics (race, sex, sexual orientation, etc.) as essential aspects of their social identity. Maybe you just don’t feel very oppressed?

 

[Slithytoves]

The correct response to this is a dedicated effort to organize the autism spectrum community so we can be a formidable force for positive change. As a psychologist and social activist I am distressed by the lack of progress in this area. I place and the blame squarely at the feet of self-advocates who care more about telling us what they think than learning what they should do.

I still feel a bit uneasy blaming our problems on others espousing their opinions. 'Be the change you want to see' and all that. How do we start organizing? If I'm not doing it myself, I can hardly fault them for not doing it (unless they're being truly hypocritical).

I agree with Egyptian 's comment, but when I do, I don't see the action of espousing opinions as being the problem. It's the focus on espousing opinions in lieu of taking equally public steps to try to organize the community that I see as problematic.

The kid in the video is telling us what he thinks, and that's fine. But if he considers the issue important enough, and considers himself enough of an advocate to be taking questions for public answering on Youtube, why isn't he actively calling his viewers to action? I've gone back through the archive of his vlog on Youtube and haven't heard anything but more of the same kind of presentations we saw in the entry you posted. I could be wrong; he could be working on something behind the scenes. But if he is, why isn't he putting it out there by now?

I know exactly how we could start organizing. I've had training in community organization and activism, but that's not even required. The biggest immediate obstacle is harnessing sustained energy from enough people to get an initial plan and strategy going. That may be a problem in this community. I haven't seen much genuine will. Maybe it seems like too big of an idea to wrap our heads around? Like it would take too much energy and commitment?

I'd be all for doing the groundwork if I saw indication that I would have consistent partners. I've been involved with too many groups where people were excited at first, then lost steam. Show me half a dozen serious commitments and I'd invest full-time. I had intended on being an organizer for Nadador's project.

 

[Judge]

The kid in the video is telling us what he thinks, and that's fine. But if he considers the issue important enough, and considers himself enough of an advocate to be taking questions for public answering on Youtube, why isn't he actively calling his viewers to action? I've gone back through the archive of his vlog on Youtube and haven't heard anything but more of the same kind of presentations we saw in the entry you posted. I could be wrong; he could be working on something behind the scenes. But if he is, why isn't he putting it out there by now?

Just a suggestion. You might google "John Scott (Scotty) Holman" in conjunction with autism. Perhaps that will shed more light on such questions. Looks like he functions as an advocate through being a columnist. There's a lot out there...

 

[SignOfLazarus]

The biggest immediate obstacle is harnessing sustained energy from enough people to get an initial plan and strategy going.
...
I'd be all for doing the groundwork if I saw indication that I would have consistent partners. I've been involved with too many groups where people were excited at first, then lost steam. Show me half a dozen serious commitments and I'd invest full-time.

This.
You end up scratching your head wondering what happened. I do anyway.

ETA:
I think it can often be about sustaining energy,enthusiasm and effort though, which is something to be learned. When people first realize that something about what they are doing might be not what they expect... it's often at that point they drop out instead of considering that's not a downhill trend.

That's what I see, but we all probably have different experiences. It's all practice, stamina for anything.

 

[Slithytoves]

Just a suggestion. You might google "John Scott (Scotty) Holman" in conjunction with autism. Perhaps that will shed more light on such questions. Looks like he functions as an advocate through being a columnist. There's a lot out there...

I've just been reading some of his stuff from various sources. I'm sorry, but I've seen too many of this type in social movements I've been active with. Too much of what he's doing is about personal ego -- telling his own story, stating his views and otherwise interjecting himself -- than anything like purposeful change-making. There are markers I look for in good advocates that he just doesn't demonstrate. I know I must seem like I really have it in for this guy. I've just run into a lot of Scottys over the years. I've also known a lot of the "real deal" who get things done. There's precious little comparison.

I think it can often be about sustaining energy,enthusiasm and effort though, which is something to be learned. When people first realize that something about what they are doing might be not what they expect... it's often at that point they drop out instead of considering that's not a downhill trend. That's what I see, but we all probably have different experiences. It's all practice, stamina for anything.

Stamina for a cause does take practice. You're right that finding out things aren't quite what was expected can kill enthusiasm quickly. So can finding out just how much hard work is involved. So can finding out you won't be getting much personal glory from your investment in a serious group effort. That last one knocks out a lot of people, in my experience. Thus my skepticism about certain types. Unfortunately, activism attracts an inordinate number of individuals who like to imagine themselves as heroes and champions. It drives me nuts every time. It's about the cause, not you.

 

[Judge]

I've just been reading some of his stuff from various sources. I'm sorry, but I've seen too many of this type in social movements I've been active with. Too much of what he's doing is about personal ego -- telling his own story, stating his views and otherwise interjecting himself -- than anything like purposeful change-making. There are markers I look for in good advocates that he just doesn't demonstrate. I know I must seem like I really have it in for this guy. I've just run into a lot of Scottys over the years. I've also known a lot of the "real deal" who get things done. There's precious little comparison.

Entirely possible. I think that's a dynamic that permeates a great deal of the media in general when it comes to various causes. Where the "drum-beater" begins to enjoy the sound of his own drum a little too much.

Then again, perhaps ultimately he's not advocating anything, but just doing his own brand of "personal therapy" in a very public way. And on occasion getting paid for it. Hard to say from my perspective. I just wish this issue was more publicized with many more sources than to see us have to scavenge for them.