Tag Archives: rant

That sympathy vs. empathy video

Ok, so I finally watched that video that I’ve been seeing everywhere.

Here it is, by the way:

I’ve been a little trepidatious about it because I was worried it would approach empathy and sympathy in a way that I find icky.

I was right.

So ok, the video made some really good points. The actions they are labeling as “sympathy” really are harmful actions that lots of people engage in, but shouldn’t. It’s true that people shouldn’t try to make it better or point out a silver lining or similar sorts of things.

Regarding empathy, I also agree that it’s true that people should do their best to be with you in your dark place. I mean, I wrote about this.

But then there was that part when Bear goes down into the hole where Fox is, and says “I know what it’s like down here.” And the video lost me right there. I HATE it when people claim they understand. Really. It’s awful. Because most of the time they DON’T understand. Not really. When Bear joins Fox in the dark hole, he’s being a good friend. He’s joining the fox and sharing his experience. That’s awesome. But Bear has a ladder. And a lightswitch. And went down there of his own free will, while Fox had the ground just fall away. And that FUNDAMENTALLY changes the equation. It’s like spending a day in a wheelchair and then claiming to totally understand what it’s like needing a mobility aid all the time. You may be able to temporarily share the experience, but you can always leave it behind and go back to your life where all this, whatever “this” is, is not a thing. Honestly, I really hope you get why this is not a good thing. When you have power over your circumstances, and you can leave whenever you want, it is not the same as it is for a person who is stuck there.

Now, maybe at some point in the past Bear had a similar experience. Maybe he was in a hole with no ladder or lightswitch, and can draw on that memory to have an idea of what the fox is going through. But even then, his experience was different because it was HIS EXPERIENCE, and not Fox’s experience.

Then there was “Ooh… um… want a sandwich” Giraffe. Another thing I’ve talked about over on my blog is the fact that we CANNOT assume that a person’s ability to express themselves is equivalent to a person’s ability to think. Or feel. For all we know, “want a sandwich” lady is, in fact, feeling all of those empathy feelings. She could very well be struck deeply by what was shared, and care a lot. And maybe she just doesn’t know where to go from there, and out comes something awkward. I know I’ve been in that position. I’m sure lots of people on the spectrum have been in that position (look up autism and hyper-empathy if you want to read more on that). All that video did was demonize the awkwardness, and push a bunch of assumptions about her connection or lack thereof based on a few words. So not cool.

Though I also want to add – maybe that wasn’t awkwardness at all. Sometimes when I’m getting really wobbly, a sandwich is exactly what I need, and my bf has “check to see if she’s eaten” high on his list of things to look at if I’m doing badly. And in some situations – not all of them, but some – doing some “at least’s” can be helpful in terms of perspective taking. I mean, if a person is struggling with depression, they might lose perspective. Their time horizon might be really short (this happens to me). For those people, in those situations, giving some perspective can be VERY useful.

I actually like to use the word sympathy (or similar) in these situations. Because I’m not going to go claiming I understand, as though my experiences are the same as someone else’s. They aren’t. So I can say “I have been through something similar and I can sympathize with your experience. I know how much it sucks. I am here for you, and I care.”

But then, maybe I haven’t been in a similar hole. I’ve never personally experienced racism. Occasional bigotry, sure. Sexism, definitely. Ableism and… um… mental-illnessism, totally. But racism? Nope. My ability to understand the experiences of a person who is experiencing racism is far far less than my ability to understand the experiences of another autistic person, or another person who deals with depression or anxiety. I can, however, draw on my own experiences of oppression, believe their experiences, and connect that way. All the while admitting that no, I don’t really understand. I can’t really understand. I can believe, I can sympathize (yep, the dirty word again!), I can care, and to whatever degree I can attempt to connect, but that’s pretty much as far as it goes. I also like it on the other end. The first comment in this here post started with the commenter sympathizing with me, and it was exactly right. It was wonderful. Sympathy is NOT some icky thing embodying harmful behaviors.

So yeah. This video bothered me. I agreed with most (though definitely not all) of the commentary on the basic behaviors, but I hate how it used the word “sympathy” as something dirty and bad. I also hate that it’s supposed to be good to claim to understand. Plus, the fact that it contrasted one person’s actions to another person’s feelings was rather problematic.

People sometimes claim to understand me. They usually don’t. They are drawing from their own experiences – which are different from mine – and then trying to make a connection. Which is fine and good, but it usually comes with assuming that my experiences are like theirs. Which they aren’t. So yes, connect with me. Yes, bring up similar experiences that lead you to be able to sympathize with me. But STOP saying you understand.

Finally – that video never did stop to mention, even briefly, the idea of just checking in with the person to see what THEY need or want. I hate it when people say “I understand.” Maybe someone else loves it. Asking me if I need a sandwich can be incredibly helpful to me, but maybe someone else would find it insulting. Some people find assistance getting perspective really helpful. Other people do not. There is no one right answer, and just finding out from the person in question what they need should be considered very important. That the video didn’t even bother to mention it was downright disturbing.

If that’s what empathy is – pretending to understand when you honestly don’t, and doing what you think is “empathic” rather than actually checking in with the person – I want no part of it.

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This is not support

There’s a lot of noise being made about Autism Speaks right now, and as usual I’m a little late to the party. I don’t follow them closely so I tend to get my information second hand, and it takes me a while for my thoughts to reach a point where I can put them into words. Especially when it’s about a thing that is provoking a strong emotional response.

Like this thing here.

This. Is. Awful. It’s fear-mongering. It’s really hurtful to autistic people (many of whom have already spoken on the matter).

Are there people and families out there like the ones they are describing? Yes, of course there are.

Do they need help? Yes, very much so.

Do I think we need to do more? Definitely.

Is that the only face of autism? Gods, no.

Is it fair or accurate to take this one segment of an incredibly broad and diverse group and claim “This is autism”? Not even a tiny little bit.

Comparing us to people going missing or falling gravely ill is fear mongering. It’s mean. It hurts.

Saying that we make our parents ill is awful.

And these children they are talking about – many of them will read those words and believe them. They will read that they are missing or gravely ill, that they make their parents ill, that they are a burden.* Is this the message we want to send? Does Autism Speaks even understand, or care, about what they are doing? About the message they are sending and the people who will receive it? This is discrimination, demonization, oppression, and it is coming from the very people who would presume to speak for us.

They’re going to DC to talk about autism, and last I heard have yet to invite a single autistic person to speak. They claim to speak for autism, but how can they do that when there is not a single autistic person in their organization? As a general rule, organizations get to speak for a group only when they are comprised entirely (or almost entirely) of the people in that group. It should be shocking to think of an advocacy group made up of a bunch of people not in the group, yet there are huge numbers of people that support Autism Speaks.

Now, once upon a time a bunch of people complained, loudly, at this lack of autistic representation. Autism Speaks did eventually respond by taking on one, and only one, autistic person and sticking him in a committee. Yeah, a committee. The token autistic. They then proceeded to ignore him. Yesterday Mr. Robison resigned in disgust, finally realizing that despite the fact that their tagline is “it’s time to listen” they, themselves, do not listen. They have had years and years to learn to listen, and have, with their most recent “call to action” proven that they have not changed a bit.

Their history of fear mongering and demonization continues into the present and it IS NOT OK.

I support helping people on the autism spectrum. I support therapies and assistance and providing us tools to be able to learn and communicate and become independent – whatever that means for any given individual.

I do not support Autism Speaks, and I feel the need to say that publicly. What they are doing is not ok. They need to stop. They need to listen. They need to learn.

Sadly, at this point I doubt they ever will.

*When a child walks up to their mother and says “Mom, do I make you ill?” because of what a “support” group said, something is seriously wrong.

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Stop Saying That!

*side note: I wrote this quite recently in a moment of significant frustration. Instead of cleaning it up and removing all the feels from it, I’ve decided to leave it as is. Rough, disjoint, and full of frustration. I’m kind of not sure about this, as I seem to have some idea that I’m not supposed to actually show my feels (talk about them, sure. show them, not so much) but I’m trying it anyway.

Seriously, quit saying that I am the one who lacks empathy. Because I am TIRED of this.

Jess, of Diary of a Mom, is one of the few mom bloggers I read. I appreciate the fact that she makes an effort to bridge that gap between autistic adults and parents of autistic children. But, as shown in this post even she finds it to be somewhat remarkable to actually listen to an adult on the autism spectrum for insight into what it’s like to BE on the spectrum.

Even she admits that it had not occurred to her to look at things from her autistic daughter’s perspective. In the end, she is another parent who does a whole lot of talking to other parents, and not a lot of talking to us. I’m glad that she talks to us at all, don’t get me wrong. And she does try, she works on promoting the whole idea of talking to adults on the autism spectrum because, you know, we’re there and that’s a good thing. But still, when I’m read her blog I still find that I am Other. I am Them. She is talking to other parents, not to autistic adults. And then, if I stop to think about it, I realize that she is Them-ing a group of which her daughter is a part. The daughter on the autism spectrum, who she is working so hard to help, and create a world where her daughter can be who she is, but still I’m Them. I barely even know how to process this, but it just seems so messed up. And this is coming from a parent who WANTS autistic adults to be listened to, and not all parents want that.

And the comments… parents who had never even considered looking at things from their child’s perspective. Not even that they hadn’t bothered to do so yet, but it had not even occurred to them that it is a thing to do. And I am SO FRUSTRATED at that.

I regularly see parents claiming that they are their child’s voice, often when their child has significant communication difficulties. And you know what? You ARE your child’s voice. You are their primary advocate until your child can speak for themselves. How can you possibly claim to be able to do that if you never bother to stop and really try to see from your child’s perspective? If you want to understand someone, you have to look at their world from their point of view. You have to at least TRY.

You want to talk about people not understanding that other people are different than them? Look at yourselves before you go looking at me. Look at the people who don’t understand that when I say I don’t want to touch strangers, I actually mean I don’t want to touch strangers. Look at the people who insist that I am a puzzle without bothering to think about the impact that metaphor has on me and those like me. Look at the people who blame autistic people for our difficulty in understanding others, and then continue to blame autistic people for others difficulty in understanding us.

Yes, I need to be careful of this too. It’s true that I don’t understand people. But at least I am aware of my lack of understanding. I struggle. I really struggle. People are incredibly hard sometimes. But things like this just make it harder, so just fucking stop it already.

Stop misrepresenting what we say. Stop disregarding us. Stop pushing us out of our advocacy. Start noticing that we have things to say, and we are saying them, and we deserve to be heard! Parents, get out of your own heads for a few minutes at a time, and try to see things from your child’s point of view. And yes, it’ll be hard. We’re different from you, and many cannot communicate with you easily. We have impairments in that area. But this is where adults on the autism spectrum can help. We’ve been there. No, we do not know your child as well as you know your child. But we know what it’s like to be on the autism spectrum. I can tell you about myself and hope that some of it applies. I can tell you what I believe and what I feel and where I’m coming from and all you have to do is listen.

I see so many parents talking to other parents, and so little talking to adults on the spectrum.

Please just listen.

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“But I can’t help it!”

Shortly on the heels of my “just try harder” post I am, apparently, writing the inverse. A “please try at least a little” post.

I’m going to start with a little back story. Several years ago, not too long after I first got an inkling that I might, maybe, possibly could be an aspie, I noticed a trend online. People would be horrendously rude, and when called out on it would protest “but I have Aspergers! I can’t help being rude!” I found this completely unacceptable and as a result I resisted the aspie idea for years – because I didn’t want to be one of the people I saw online using it as an excuse for bad behavior.

Eventually the trend seemed to die down, but I recently saw that it isn’t gone. Though interestingly, this time the excuse wasn’t “but I have Aspergers!” Oh no. This time the excuse was “but I’m borderline Aspergers!” Apparently the “excuse for bad behavior” line has moved from “has Aspergers” to “almost but not quite has Aspergers.” I do not view this as a positive trend.

I also want to point out that the person I saw make this excuse has a pattern of barrelling into threads and posting rather like a ton of bricks. She tends to be rude and abrasive, and has a distinct pattern of Not Listening when people call her out on it, however gently or not-so-gently they do so. This is really not ok. Not even a little bit. Having Aspergers is NOT an excuse for being rude or explicitly bad behavior. Almost-but-not-quite having Aspergers is even less of an excuse. It really bothers me to see people making these kinds of excuses for appalling behavior, particularly when there is a distinct lack of ever bothering to apologize or make amends or attempt to correct their behavior in the future. My being an aspie may explain my mistakes, but it does not excuse them. It’s up to me to do my best to learn and grow and apologize when I mess up.

So seriously, this needs to stop. I, for one, want to distance myself from such people as loudly and as strongly as I reasonably can. Making excuses for one’s bad behavior does not help anyone. It doesn’t help you, it doesn’t help the people you may have hurt or offended, and it really doesn’t help everyone else on the autism spectrum who are trying to make it in a strange and unfamiliar world. So please, please show us that you’re trying, even if it’s just a little bit.

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Just Try Harder

 

Sometimes people say rather hurtful things to me, and I’m sure others, with the best of intentions. They’re trying to give advice and really believe they’re saying something helpful, and somehow just don’t understand how hurtful it can be to hear them. Many of them can be generally classified as exhortations to just try harder.

All we need to do is just put in more effort, or take these classes, or see that type of therapist, or avoid those foods, and if we just worked at it, we’d be fine!

Thing is, it always seems like it carries the implication that I must not be working at things already, and it definitely carries the implication that I’m not working hard enough. It also implies that whatever it is they are encouraging me to fix can be fixed, so the fact that my aspie-ness is showing is somehow my fault. As “helpful advice” goes, I find it insulting and hurtful and not helpful at all. Especially because that particular brand of advice almost never comes when I’ve actually asked for advice. It seems to reside almost entirely in the realm of unsolicited advice, from people who think they know what’s wrong with me better than I do.

Here’s the deal. I do work. I work hard. But I don’t necessarily work hard at the things people think I should work hard at. I work hard to be able to walk up to an associate in a store to ask for help. I work hard to remember to reciprocate social questions. I work hard to deal with my sensory issues. I work hard to increase my mobility so I don’t hide in my house away from the world all the time. I work hard to talk to people I don’t know.

I do not work hard to hide my stimming, even in public. I only sort of work hard to hide my awkwardness in social situations. I do not push myself to keep my ASD hidden away, as though it’s somehow shameful or wrong. Yeah, I will apologize and try to improve if I am unintentionally rude or make a legitimate social slip, but I will not apologize for being strange or quirky or sensitive or twitchy or any number of other things that make me odd, but are not actually wrong.

“Trying harder” will not make my social awkwardness go away. “Trying harder” will not magically let me learn all the social protocols I have yet to learn. “Trying harder” will not cure my sensory issues. I already try damned hard.

I refuse to “try harder” to pass for normal. I pass or I don’t pass. I won’t apologize for who and what I am.

All of which means that “just try harder” is both useless and insulting, and not something I should have to hear from anyone. I can appreciate someone trying to be helpful (sort of) but please pay attention to the sorts of things you say, and what they may sound like from the other side.

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Miracle Mineral Solution

So there’s a new health quackery making the rounds.  Maybe you’ve heard of it – Miracle Mineral Solution, or MMS.

It has been touted as a cure for all sorts of things (“AIDS, hepatitis A,B and C, malaria, herpes, TB, most cancer and many more of mankind’s worse diseases”) but now AutismOne has helped them add a new thing to the list – autism.

To put it simply, MMS is bleach.  Industrial bleach that they are telling you to administer orally, or bathe in, or put in your eyes or ears, or administer as an enema to your autistic child in order to “cure” them.  They claim that because MMS has disinfectant properties and the same chemicals can be used to disinfect water, it can also somehow eliminate pathogens from your body and cure you of what ails you, whatever that happens to be.  Or cure your autistic child – and perpetuating this on children is far worse than doing it to yourself (which is really quite bad enough).

To put it less simply, it’s a 28% sodium chlorite solution which the user is supposed to activate by mixing it with something acidic like orange juice or vinegar.  Once that is done, it causes a chemical reaction changing the sodium chlorite to chlorine dioxide.  Chlorine dioxide is an industrial bleaching agent.

Not surprisingly, use of this stuff tends to cause vomiting and diarrhea.  What probably should be surprising but isn’t is that proponents of MMS claim that vomiting and diarrhea are signs that it’s working.  Other people have gone over the scientific aspects of its problems far better than I could, so I simply invite you to read what they have written if you are curious – though admittedly, I would hope that “bleach enema” would be enough for anyone to stay away from the stuff.

Also, if you are interested, there is a petition on change.org urging a ban on MMS as a curative agent (it obviously still has industrial uses).

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I am not a puzzle

 

I am not feeling terribly inspired this week, so I’m just going to do a brief rant about how autism is symbolized.  I don’t like the puzzle, I don’t like being represented by a puzzle, and I don’t like trying to separate ASDs from those on the spectrum with claims that it only represents the autism.  Don’t care, do not like.

One of it’s representations (probably the one I take greatest issue with) is that it represents how autism, or people on the spectrum, are “puzzling.”  So taking a quick look at that – I am puzzling, people don’t always understand me or the way that I think and process the world, therefore I am a puzzle.

However, I find neurotypicals puzzling.  I don’t always understand them or the way they thing and process the world.  Does that mean that they are a puzzle as well?  No, it means that I am deficient in some way, disabled by being on the spectrum and cut off from everyone else.

Partly I sorta resign myself to that attitude.  Neurotypicals are in the majority and they get to decide what fits and what doesn’t. They get to say that their standard is the only standard, and they get to point at me and say I am puzzling but they are not. Nonetheless, I protest being symbolized that way.  I make total sense to me, and neurotypicals finding me puzzling does not somehow mean that I *am* a puzzle.

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labels

I’ve decided to just go ahead and be opinionated today.

I like labels.  I like them a lot.  Now, I’m probably biased since I really like words in general – words are such amazing fantastic things, with meanings and layers of meaning and nuance and connotations and all sorts of things.  Words are cool.  There are all sorts of types of words, and most of those types are fabulous, including labels.

I have found that there are many people out there who dislike labels.  The usual reasons given are that labels pigeonhole people, or put people in boxes, or define people and therefor limit them.  Personally, I very strongly disagree with all of that.  Ok, I agree that those are bad things to do, but I disagree that labels do that.  People do that and use labels as an excuse, but in my experience people don’t really need labels to do it.  There are all sorts of excuses; labels are just one of many.

Personally, I find labels incredibly useful.  Using a label to define a person is a stupid way to use it.  Using a label to describe a person, on the other hand, is very useful indeed.  It’s helpful to me personally to have labels for myself – like, for instance, Asperger’s.  My life has gotten so incredibly much better since I got that label!  It has helped me to understand myself better – to give myself a context that helps to explain my oddities.  It doesn’t define me or pigeonhole me or limit me.  Instead, it describes me.

Interestingly, as much as some people claim to be against labels, they only seem to be against some labels.  For instance, I have yet to have anyone complain to me about labels when I describe myself as a crafter.  Or as a cat person.  Or as a woman.  Or as a rider.  Or as any number of words I use to describe myself.  I have never managed to figure out what it is that is suppose to make some labels bad, and other labels not bad.  So instead I just don’t worry about it – labels are good.  Sometimes people use them in bad ways.  That is not the fault of the label, it is the fault of the person who used it.

In other news, TACA has yet to get back to me, nor have they corrected their erroneous “fact.”  Given that it’s been almost a week, I do not consider this a good sign.

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Bad Reporting

After my adventure with sucralose on Saturday, I decided to head to google to see if anyone had anything to say about people on the autism spectrum and sucralose.  It was mostly idle curiosity, but it sent me down a very different track in the end.

In my browsing, I stumbled across TACAnow, TACA standing for “Talk About Curing Autism.”  I really do not want to get into the entire “should there be a cure for autism” debate at the moment, instead I want to talk about something I found on their “about autism” page.  They have a facts section, and the very first “fact” was the following:

“One in every 88 children in the U.S. have been diagnosed with autism. (NOTE: This number does NOT include: PDD, Aspergers and other spectrum disorders. These statistics are endorsed by the CDC, American Academy of Pediatrics, and other federal organizations.)”

Now, this tripped me up because it did not at all mesh with what I had previously read about the CDC study – that the number was not a reflection on how many children were diagnosed, and that it included a number of spectrum disorder. I thought it was odd that a website that is supposed to be about autism would get it wrong.  Wouldn’t they verify their facts before publishing them?

Before going further I decided that I should verify my own facts first.  So I headed to the CDC’s website to see what they had to say about it.  Rather conveniently, they have the abstract for the study available on their website for everyone to see.  The section called “Description of System” is what is relevant here, and there are two sentences that were of immediate relevance to TACA’s “fact.”

“ADDM [the group the CDC created to do these sorts of studies] does not rely on professional or family reporting of an existing ASD diagnosis or classification to ascertain case status. Instead, information is obtained from children’s evaluation records to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years.”

“A child is included as meeting the surveillance case definition for an ASD if he or she displays behaviors (as described on a comprehensive evaluation completed by a qualified professional) consistent with the American Psychiatric Association’s Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: Autistic Disorder; Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS, including Atypical Autism); or Asperger Disorder.”

This means that TACA is publishing a blatant and verifiable falsehood, which is very disturbing to me.  It’s bad enough when news services report badly, but an autism website has no excuse at all.

After I publish this post, I intend to send them the following letter using their “contact us” form:

I recently stumbled across the tacanow website while I was looking for information about autism, and took a look at the “about autism” page.  I could not help but notice that the very first point in the “facts” section (One in every 88 children in the U.S. have been diagnosed with autism. (NOTE: This number does NOT include: PDD, Aspergers and other spectrum disorders. These statistics are endorsed by the CDC, American Academy of Pediatrics, and other federal organizations.)) had two distinct inaccuracies, which is something I find quite bothersome.

  1. The CDC study did not indicate the number of children who are diagnosed, but instead looked at health and school records to see who fit the criteria.  As a result, the number is at best an estimate, and has nothing whatsoever to do with the number of children who have been diagnosed with autism.
  2. This number does, in fact, include PDD-NOS and Asperger Syndrome.

Both of these facts can be verified on the CDC’s website, as they provide an abstract of the study for public viewing here: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w

The relevant information is contained in the section headed “Description of System.”

I believe it would be wise to consider correcting these points on your website.

Thank you.

I guess we’ll see if they get back to me or fix the error.

After all that, I decided to see just how well or poorly various new services were doing on reporting about this study.  I did another quick google search simply for ‘autism 1 in 88’ to see what I’d get.

To be honest, most of the results were neutral.  I couldn’t really classify them as accurate or inaccurate – more that they were simply vague and unspecific.  Even that could probably be considered poor reporting, though.  I did not find many with a link to the abstract, either.

There were four that were particularly bad.

ABC news said, ““One in 88 children is diagnosed with an autism spectrum disorder, or ASD, by age 8, according to a study released today by the U.S. Centers for Disease Control and Prevention”  Worth noting – the video was equally inaccurate.

Fox news, ““The Centers for Disease Control and Prevention estimates 1 in 88 U.S. children has been diagnosed with an autism spectrum disorder (ASD).”

Taunton Gazette, ““the Centers for Disease Control announced that the number of children diagnosed with autism is now 1 in 88”

JSOnline, ““One in 88 children in the United States is now diagnosed with an autism spectrum disorder that makes social interactions and communication more difficult, according to new estimates released Thursday by the federal Centers for Disease Control and Prevention.”

All four of these news sources reported factually incorrect statements.  Statements that are easily verifiable and thus there is absolutely no excuse for getting it wrong.  Overall I am still most disturbed by the TACA website – after all, news reporters getting things totally wrong is hardly remarkable at this point, as depressing as that is. (disclaimer: I did not read the entirety of the articles; I focused specifically on how they chose to report the statistic)

I do, however, also want to note that I found some examples of very good reporting as well.  CNN, Time, Technorati (though oddly, they linked to an inaccurate article on another website), NYDaily News, and Autism Speaks were all accurate from what I could see.  Several of them even linked to the CDC abstract in their articles.  So I can at least say that the problem is not universal.

Still, this bothers me.  TACA especially bothers me, given that they are an autism website.  Spreading misinformation helps no one, and there is simply no excuse for inaccuracies or, to be honest, even vagueness.  Sadly, I don’t really see much of a solution to this problem.

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I am better than this!

A little while back I stumbled across a FAQ on the website of a psychologist that REALLY bothered me.  Today I feel like taking it apart a wee bit.

The first two questions weren’t bad.  They were just basic facts and statistics and really nothing bothersome.  The problems started with question three.  Firstly, the question: “All of us have symptoms like these at times. Are we all Aspergers?”

I find this question sad but necessary.  It’s the sort of thing I see asked (or commented) regarding any number of disorders, and people seem to like to use this kind of thinking to discount or deny the existence of some disorders.  So while I find the question sad, it is worth answering.

In any case, here is her answer: “Many describe living with an Aspie as draining. It is not always the big things that lead to distress, but the constant drip, drip, drip of small seemingly thoughtless behaviors that destroys the relationship. The lack of eye contact, the obsessive/compulsive behaviors, the adherence to rigid routines, the self absorption, the social anxiety, all lead to family members feeling like they just cannot connect with their Asperger family members. It isn’t so much the unusual behaviors that make the connecting difficult, but the inconsistency. Never knowing what is coming next, makes a loving connection very difficult.”

Holy wow, all sorts of problems there, the most obvious being that this is not, in any way, an answer to that question.  It was, instead, a completely unrelated note about how Aspies apparently can’t have functional relationships.  As to what she did say, I suppose I should be generous.  I know that there are probably plenty of Aspies that have these problems.  And she did keep herself just shy (barely!) of speaking in universals. The margin, though, was way too thin.  I don’t feel right speaking for my boyfriend, but I certainly feel connected to him, and I recognize that maintaining that connection is just as much my job as it is his.  AND I find the connection important.  So really, give us some credit please.

Moving on to another comment she made: “Asperger Syndrome (AS) is demonstrated by deficits in communication, social skills and reciprocity of feelings.”  Now, this is, technically speaking, true.  However, I really wish it weren’t.  Not in that I wish people with Asperger’s didn’t have these problems (such wishing would be pointless), but in that I am rapidly tiring of Asperger’s only being defined in terms of deficits.  Personally, I think a FAQ about Asperger’s should include some talk about Aspie strengths, but apparently, on this FAQ, there is simply no room.  How sad.

Ok, skipping ahead to question 7.

7. Why can’t AS adults connect?

Reciprocity is an integral part of communicating, connecting and loving. If you cannot comprehend the interior life of another, then connection is very difficult. Especially since the interior life of an NT consists of how he or she views him or herself in relationship to another.”

The first problem is in the question itself.  AS adults may have trouble connecting, maybe some percentage of AS adults simply cannot connect at all, but it is not AT ALL fair to imply that there is some amount of universality in Aspies not being able to connect.  Shortly after that, we find ourselves with a very universal statement about NTs.  I suppose I should keep an open mind and consider the possibility that this really is universally true, so NTs, I ask you!  Is this true for you?  Does your interior life consist of how you view yourself in relationship to another?

The FAQ then goes on to explain why Aspies can’t do reciprocal relationships, and I feel like I’m starting to repeat myself.  It’s true that I have trouble with reciprocity, but it is something I work on, and I do like to connect with the “interior life” of the people I care about (or at least, I think I do, assuming I am correct in my impression of what “interior life” means).

Yet another comment, “the NT spouse realizes that his or her AS mate is just not aware of (and even disinterested) the NT’s interests.”  Gee, thanks.  I most certainly AM aware of, and interested in, my boyfriend’s interests.  Please, pretty please, stop tarring us all with this brush.

In question nine she acknowledges that women can be Aspies too.  Hooray!  Her characterization of female Aspies is that we’re seen as “cold, uncaring, and selfish.”  Are we?  Actually, I can’t speak to that directly.  I do, however, know that I personally tend to be seen as snobbish and aloof.  It’s sad, I wish I weren’t, but that’s what I get for being deeply uncomfortable around people, not knowing how to talk to them, and only being able to handle people in carefully controlled doses.

Moving on to number 11. I don’t even want to quote this one.  Basically, she says that relationships between Aspies and NTs are doomed to being abusive and unfixable.  I feel a bit insulted.

The first time I read this, by the time I got to question 12 and the line, “He [the Aspie whom we are still treating as male] has no motive to understand her [his wife’s] interior world so her complaints are bothersome to him” I was just wanting to bang my head on my desk.  Writing about it now, apparently that is still what I want to do when I read it.  As far as I’ve gathered so far, most Aspies do want to connect to people.  Explain that understanding the “interior world” of one’s partner is important to connect and presto!  We have motivation.  Additionally, the answer to question 12 really feels like going down the metaphorical rabbit hole, in general.  We start with AS people thinking their spouses are bitchy, and end with saying that domestic violence is a serious problem in homes where one partner has AS.  I have no idea if this is true or not, so I’m not really willing to comment on it, aside from to say that a statement like this should probably have a citation of some kind.

“The typical methods of marital psychotherapy used to teach communication and interpersonal skills will usually be unsuccessful within an AS/NT relationship.”  This is true.  Typical methods of psychotherapy don’t tend to work on Aspies simply in general, because we are not typical.  However, this is why there are other methods specifically for people with AS.  Typical methods of psychotherapy used to treat anxiety don’t work for me either, but that does not mean my anxiety is untreatable.  It just means that I need to use different methods.

“The AS client can master some simple communication skills to get them by in the world, but these behaviors will fall short in the intimacy of a long term relationship.

If my therapist believed that this was the very best I was capable of, simply because I am an Aspie, I think I would get a new therapist.  It’s true that I will never be NT, never act like an NT, never be the same.  It’s true that I generally need people to meet me halfway.  But this FAQ seems to treat me as so much less.

“On the other hand, some NT spouses report that the marriage can be quite gratifying if their AS spouse acknowledges his or her limitations and works with the NT to create a kind of loving connection.”

Hooray!  My reality was graced with a brief, token acknowledgement!  I’m not quite sure what is meant by the phrase “kind of loving connection,” but hey, it’s better than nothing.

Now, all that said, I think I can understand some of the author’s point of view, at least to some degree.  As much as I feel frustrated by it, it’s true that there are plenty of Aspies who have these types of problems.  In fact, it’s one of the reasons I don’t much enjoy the wrong planet forums.  Plus, it’s possible that she is experiencing something I have gathered that at least some therapists have trouble with – she is a family counselor, so probably most of her Aspie patients do present with these problems.  It seems that she has taken this, the sub-set of Aspies that she herself tends to interact with, and generalized their experiences to all Aspies.  I get that it happens, as frustrating as it is to me to be on the other end of it.  Mostly, I wish things like this would have more nuance, more room for the intense variety that comes with Aspies.  We’re not all like that characterization and I, for one, am better than that.

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