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[Sappho]

I have asperger syndrome (among other issues), and I'm sharing this here because I think there are quite a lot of aspies here, and even those who are not might be interested in being educated about the lives and experiences of people who are "different."

Basically, there is a mountain of information out there about the symptoms of asperger syndrome. Plenty of people know what it "looks like" or how to spot someone who is on the autistic spectrum -- but there is almost NOTHING describing how it actually feels and what we actually experience. I'm tired of hearing that asperger syndrome is "characterized by social difficulties" and "autistic people process information slower than neurotypicals." There is a huge gap here in communication between those with autism and those without and since no one else is trying to fill it, I've taken on the responsibility myself. I've always had a talent for writing and for helping people communicate despite their differences (offset by my severe difficulties with social skills, sensory overload, etc.). Time to put it to some actual good use.

http://crowdedhead.blog.com

I know it's a blog, but I consider it more like a collection of essays which will be updated regularly. It is not a journal, and do not expect to hear me rambling on about how unfair the world is and I don't have any friends. While my personal experiences are necessarily included, the purpose of this is to be educational, informative, and occasionally funny or inspirational. So far, my only readers seem to be people on the spectrum from the WrongPlanet forum, which is fine, but I'd also like to reach people from other backgrounds and with other types of brains. I'm especially interested if my essays are helpful to non-autistic (neurotypical) people in understanding how we feel and why we act the way we do.

If you can spare a few minutes, please stop by and have a look. I don't expect this blog to become famous or anything, but I do hope I can make *some* sort of impact and difference in the world with it. If you like what you see, please do spread the word to anyone you think might benefit from reading my essays.

Thanks guys!

[Tellemurius]

For a person thats beaten back the symptoms i can tell you its not a bad world. The best way i would see doing this is by registering the thought process of a person's mind. I would love to see a conversation though that can be interesting for a look in a social interaction

[Sappho]

I'm not sure what you mean. Yes, for those of us who can manage the symptoms life is manageable, but it is frustrating that people equate autism with its "signs" and when the signs are not present (I've trained eye contact and conversation, etc.), no one accepts that there is still something wrong (even when they know I have asperger syndrome). They think any social mistake is intentional and a meltdown is just a sudden explosion without any clear cause. Autism is more than just what it looks like, and with this blog I'm trying to describe what it feels like, and what is actually going on in my mind.

So far I've gotten excellent feedback. Feel free to have a read and let me know what you think.

I'm not sure how often I'll be able to come to B12 for the time being, so if you want to communicate with me about the blog it's best if you can leave comments there, otherwise I might not see them for a while.

[Tellemurius]

no problem sorry about my post though, my defense is its late night, ill see if i can make a inane one tomorrow.

[EnigmaticHat]

Nice.  There's definitely a lot of ignorance about mental conditions, even relatively easy to understand ones like depression.  I think a lot of it revolves around something like "if I can't see it it doesn't exist".  I think there's also this ideology of dividing the world into "good" and "bad" people, and that prevents people from understanding that those who act in a "bad" way are doing so for a reason.  For example, assuming that someone who can't finish their schoolwork is lazy, that someone who can't interact normally with people is anti-social or some sort of freak, or that someone who break laws is just some sort of bad apple and has to be punished or cut off from society.  Not to mention that "bad" is sometimes just "different"...

I honestly don't know much about autism.  Its been described to me, but most summaries I've heard have either described it in very vague terms or focused on the history of the condition.  Nor do I have any idea what its like to have autism, although as someone who gets very easily distracted and frustrated by noise I can very much sympathize with the first post I've read (The Meltdown).  Also... are autism and aspergers the same thing?  I've always been under the impression they aren't, but the OP uses them interchangably.

I really do understand what you mean when you talk about an invisible disability.  I have (probably?  It's never been officially diagnosed or anything, although I was categorized as learning disabled) disgraphia, or really shitty handwriting combined with some other things like pain in my hands while writing and possibly some general distractedness and other awkwardness.  Its not too much of a problem currently because everyone in my college types everything anyway, and also because they let me take a reduced course load to make up for my slow working speed.  But damn it made my life miserable for most of my early education; my teachers just assumed I was some sort of idiot or lazy bum (which is ironic because I cared about learning more than anyone else in my grade) even though I understood everything I was being told and the real problem was it was literally painful for me to write out 20 math problems a night.  Its just so frustrating to know that my condition (it might not be disgraphia, but its clearly something) is real and have everyone around me not understand that.

So, yeah, keep fighting the good fight I guess.  There's a definite need for what you're doing, although it'll probably take some sort of larger political movement to cause major change.  One thing I will say: I have no idea how you put a share button in or any of that other social networking nonsense, but you should consider adding one adding one.  That way if your blog resonates with people it will be easy for them to spread the word.  Free advertising and all that.

[Sappho]

Nice.  There's definitely a lot of ignorance about mental conditions, even relatively easy to understand ones like depression.  I think a lot of it revolves around something like "if I can't see it it doesn't exist".  I think there's also this ideology of dividing the world into "good" and "bad" people, and that prevents people from understanding that those who act in a "bad" way are doing so for a reason.  For example, assuming that someone who can't finish their schoolwork is lazy, that someone who can't interact normally with people is anti-social or some sort of freak, or that someone who break laws is just some sort of bad apple and has to be punished or cut off from society.  Not to mention that "bad" is sometimes just "different"...

I honestly don't know much about autism.  Its been described to me, but most summaries I've heard have either described it in very vague terms or focused on the history of the condition.  Nor do I have any idea what its like to have autism, although as someone who gets very easily distracted and frustrated by noise I can very much sympathize with the first post I've read (The Meltdown).  Also... are autism and aspergers the same thing?  I've always been under the impression they aren't, but the OP uses them interchangably.

I really do understand what you mean when you talk about an invisible disability.  I have (probably?  It's never been officially diagnosed or anything, although I was categorized as learning disabled) disgraphia, or really shitty handwriting combined with some other things like pain in my hands while writing and possibly some general distractedness and other awkwardness.  Its not too much of a problem currently because everyone in my college types everything anyway, and also because they let me take a reduced course load to make up for my slow working speed.  But damn it made my life miserable for most of my early education; my teachers just assumed I was some sort of idiot or lazy bum (which is ironic because I cared about learning more than anyone else in my grade) even though I understood everything I was being told and the real problem was it was literally painful for me to write out 20 math problems a night.  Its just so frustrating to know that my condition (it might not be disgraphia, but its clearly something) is real and have everyone around me not understand that.

So, yeah, keep fighting the good fight I guess.  There's a definite need for what you're doing, although it'll probably take some sort of larger political movement to cause major change.  One thing I will say: I have no idea how you put a share button in or any of that other social networking nonsense, but you should consider adding one adding one.  That way if your blog resonates with people it will be easy for them to spread the word.  Free advertising and all that.

Thanks very much for reading. I will definitely update regularly. You'll have to let me know if you feel you understand better after you've read more. That is, after all, the goal. And if you see something worth sharing, please do spread the word. I'm not making any money from this or anything, and I know one little blog isn't going to change the world, but the more impact I can have, the better.

Asperger syndrome is a type of autism. Autism is a "spectrum disorder" which means you can have it in a very severe way (not even being able to talk, for example), or in a very high-functioning way, or anywhere in between. They used to say that asperger syndrome is just a higher-functioning form of autism (and actually I believe the DSM is changing the definition back to that soon, which is very frustrating and unfortunate) but there are key differences that make "classic autism" and "asperger syndrome" distinct. For example, people with AS learn to talk on time or even early, while those with "classic autism" learn to talk late. There are many things that are shared in all types of autism - this is why I sometimes talk about "people on the autistic spectrum" to show that what I'm saying applies to both higher- and lower-functioning types. Sometimes I specifically say asperger syndrome because what I'm talking about might not apply to those with "classic autism."

Or to put it another way, there's Pepsi and then there's Diet Pepsi (or Pepsi Lite depending on your country). Both are "Pepsi" and share the same basic structure, but there are some things only true about Pepsi and some only true about Diet Pepsi - certain chemicals, for example, or a slight difference in taste, or the design on the label.

Also, I think that the view of "different = wrong" is present to some degree everywhere, but much more prevalent in some places than others. In the United States I was always WRONG and BAD, and it was ALWAYS my own personal fault (and probably intentional to boot). I think this also has to do with the attitude in the US that everyone is responsible for themselves and their own success, the whole anti-socialistic-feeling thing. Here in Prague I have a much easier time. Difference is not looked at as necessarily bad, and people are much more interested in helping and accommodating each other. After all, everyone is good at some things and bad at others - it doesn't take a disability to make you rely on other human beings.

I'm not sure how I'd add these social media buttons. I suppose I could look into it. For now I think I don't have many readers anyway, and if someone wants to share something they can just pass around a link. Maybe I'll see about adding some buttons - might encourage sharing more I guess. Thanks for the suggestion.

[EnigmaticHat]

I think part of the issue with me understanding autism is that it resists being described in a concise manner.  Paranoia is "the feeling that others are hostile or dangerous regardless of whether there is evidence that they are", depression is "like sadness, but so much so that it can be harmful", OCD is "compulsion to get everything 'just right' that most people have, but moreso".  But my impression of the current understanding of autism is "we don't really know what it is, but there's some people who have shown the same general symptoms so we grouped them together, and whatever it is appears to effect thought speed and social interaction, and here's some history and stuff."  Its the difference between a simile and a metaphor, most descriptions of autism are describing what its like, not what it is.

So I guess I get the general gist of what autism is, but I feel there's some sort of core idea that I (and possibly science in general) doesn't get.  Like reading an Ayn Rand novel without realizing she's pushing objectivism, even if you can describe the differences between her novels and other novels there's still a core idea you're missing.

Your description of how you get information unfiltered (from the post titled Asperger Syndrome) definitely felt more concrete than the other explanations of autism.  Do you feel that explains your other symptoms?  Having to process a lot of sensory data "manually" (aka, with conscious effort) could explain why the noise of a crowded subway is overwhelming, because you don't filter out the noise of conversations you aren't listening too.  It might also explain why you would need to consciously learn non-verbal social cues; these things aren't explained to kids because most people subconsciously learn to read those cues without realizing it.  That's a kind of filter, I would say.

[Sappho]

I think that having to consciously filter information is a very large part of what causes a lot of the overall problems of autism. Some people argue that it may be the basic cause underlying all of it, as you suggest. I agree with you that social skills probably are related here. Most people learn things like body language automatically, because something in their brains filters them out from other information and remembers them automatically. We have to learn them consciously (I mean literally, we have to take lessons) and they never feel "natural" - just copied behaviors that we have to keep track of.

On the other hand, I don't know that you can point to that and say "that's autism" in a nice concise way, however convenient it might be. : ) There have been several studies demonstrating that people with autism actually have visible differences in our brains, and there are other things that I haven't gotten to yet in my blog. Things like our poor body awareness - tests have shown that we are not fully aware of exactly where the various parts of our bodies are in relation to each other. For example, if we close our eyes and move our hand in one direction, then open our eyes, we might be surprised to realize how far it's gone, or what a short distance it has gone, or even what direction it was going. This seems to also explain part of why we are so clumsy and have such poor body language. Even if we think in our mind's eye that we are doing it right, the actual physical result is different and incorrect. I know that I personally have a big problem with facial expressions. Very often I think I look happy, content, or calm, only to have someone come up to me with a worried expression and ask me what's wrong.

Also, this "simple" definition lacks an explanation for why it is such a wide spectrum. Why can some of us learn to blend in fine, and others never learn to speak? I'm still looking for these answers myself.

So while it seems logical that there is some single root "cause" of everything, I don't think we've found it yet. For now, we can group the "symptoms" into a few concrete categories, though, and I think this needs to be done more. As I've said, autism is almost always described in terms of what it looks like from the outside. I think it would be far easier to diagnose if it were defined more from the inside. For example, those questionnaires to "test" yourself for autism (and the questions psychologists ask during assessments) are very oblique, dancing around the issue without ever targeting it. That's because it's all been written by people who are not autistic and are only guessing based on past observations. In the past, those labeled autistic were only the severe cases with people who couldn't communicate, so it's understandable that it was harder to pinpoint. These days, though, we realize that most people with autism are perfectly capable of communication -- once they even realize that they are autistic (I didn't until I was 24 because I didn't know what it was). Even those who can't speak can almost always read and write (and are almost always intelligent despite appearances). So why are they studying us from the outside instead of just asking us? There are online communities where we all get together and discuss what we have in common and what we experience.

Yeesh, this post could be another blog entry. : ) I'll probably update the blog again later today. I'll try to go into some of these other ideas this time. Actually, it might really be helpful if you could put your thoughts as comments on the blog itself. What you have to say is interesting and useful, and it would be great to include it there along with my own writings.

[palsch]

Asperger syndrome is a type of autism. Autism is a "spectrum disorder" which means you can have it in a very severe way (not even being able to talk, for example), or in a very high-functioning way, or anywhere in between. They used to say that asperger syndrome is just a higher-functioning form of autism (and actually I believe the DSM is changing the definition back to that soon, which is very frustrating and unfortunate) but there are key differences that make "classic autism" and "asperger syndrome" distinct. For example, people with AS learn to talk on time or even early, while those with "classic autism" learn to talk late. There are many things that are shared in all types of autism - this is why I sometimes talk about "people on the autistic spectrum" to show that what I'm saying applies to both higher- and lower-functioning types. Sometimes I specifically say asperger syndrome because what I'm talking about might not apply to those with "classic autism."

I just wanted to talk about the DSM stuff briefly, because I actually agree (generally) with the DSM-5 Autism changes so far.

One of the decisions made is to eliminate Asperger's Syndrome as a clinical diagnosis. It is absolutely erased from the DSM altogether. Instead people with clinical AS will fall under the expanded Autistic Spectrum Disorder definition.

Previously the major (practical) diagnosis distinction between Autistic Disorder and Asperger's Syndrome was the delayed onset of language skills in the former. The revised standards remove this requirement, essentially combing 'high functioning' autism and Asperger's as having the same overall clinical symptoms. Most clinical evidence supports this, and most interventions and outcomes are similar for both groups, even before you get into just how fluid the diagnoses tend to be. Similarly, people diagnosed with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified, the third branch of the current autism spectrum disorders) are likely to fall under the new autism definition, and that diagnosis has also been eliminated.

The broad goal of this is to encourage better clinical treatment of people who currently fall under the various diagnoses. Someone who currently receives an Asperger's diagnosis might not qualify for assistance that someone with similar clinical symptoms but an autism diagnosis would be able to get (certainly it isn't recognised in some major US states). At the same time, lumping together people with Asperger's under such a strongly defined diagnosis tends to suggest they have similar symptoms and needs, ignoring the internal spectrum. While this spectrum is narrower than the current range within the DSM-IV autism diagnosis, it still exists and trying to treat all people with Asperger's similarly makes no more sense than treating all people with high functioning autism similar. Making it clearer than these are a spectrum of symptoms could well make for more individualised and so better care as and when needed.

At the same time a deliberate goal of the DSM-5 was to recognise that Asperger's has become as much a cultural definition as a clinical one. There are a great many self diagnosed people out there, and lots of them simply wouldn't qualify for a DSM-IV diagnosis. The APA are often reluctant to get involved and tell people whether such identities are 'real' or not, so tend to prefer to make clinical definitions in parallel to cultural ones, neither confirming nor denying the reality of those cultural identities.

There are definite cultural impacts, but the removal of Asperger's as a clinical diagnosis doesn't mean its non-existence as a cultural or individual identity.

Speaking (somewhat riskily as an outsider) culturally myself, I'd quite like to see some of the current efforts to normalise and promote Asperger's as a positive or neutral condition redirected to focus more generally on autism and ASD. There is a fair amount of Asperger's exceptionalism, dividing that community from the 'disabled' autists. From my perspective, where I've worked with both AS and non-AS autists at the university level, this can only be divisive and harmful towards the non-AS individuals in allowing (or in some cases, promoting) negative stereotypes and attitudes towards them, even as the Aspies gain more ground towards acceptance.

Now, on top of all this I also believe that many low-level interventions (particularly the sort of mentoring/support I was involved in at uni) should be opened up more broadly, beyond clinical diagnoses and requirements. I can think of many neurotypical individuals who could benefit from such services as much as many autists/Aspies I've known.

[EnigmaticHat]

Now, on top of all this I also believe that many low-level interventions (particularly the sort of mentoring/support I was involved in at uni) should be opened up more broadly, beyond clinical diagnoses and requirements. I can think of many neurotypical individuals who could benefit from such services as much as many autists/Aspies I've known.

Are you talking about teaching people non-verbal social cues?  Because that sounds a lot more practically useful than most of the subjects taught in school...

[palsch]

Are you talking about teaching people non-verbal social cues?  Because that sounds a lot more practically useful than most of the subjects taught in school...

Much more low level than that. Just having someone who is assigned to 'mentor' someone else. You set a meeting each week, swap phone numbers and email addresses and make it clear you are available as a first point of contact if they have any problems or questions. In the end it was mostly being friends and making time to talk to him. Hell, a fair number of our 'meetings' ended up being over pints at a mutual social group.

Really it's about making sure there is a safety net available if it is ever needed. In this case it never was. But I can certainly believe that lots of people who might not have a diagnosis (and so not be eligible for the funding this guy was - I never claimed any money for the role but it was there if I needed it) could have benefited from such support being available. Going to a councillor or calling a hotline once the problem has developed is harder than going to someone who already knows you and has explicitly made themselves available.

That particular structure is very much geared towards university, but similar schemes can work elsewhere.

[Sappho]

I can see some good ideas and intentions there but honestly I don't think it will work out that way practically. First of all, those of us with asperger syndrome feel a very distinct difference from those with "classic" autism. The differences between the two types are clear and consistent enough (and believe me, I have experience aplenty with people all over the spectrum) that there ought to be a semantic difference in the label, even though the two types are both "autism." We need that different label. While you are thinking of possible benefits, I can only think of the losses that will inevitably come as a result of us all now being considered "autistic." Tell a prospective employer that you have asperger syndrome and they will be prepared for you to be a bit awkward. Tell them you have autism, and the reaction is VERY different. Nevermind that autism is a spectrum, people have very specific ideas in mind when they hear that word, and they are almost never positive. In order for this new system to work for us, there will need to be a LOT of education done - and guess who will have to do all that educating.

We have enough to deal with without having to now explain that yes, our official diagnosis is autism, but it's a different *kind* of autism than you saw in Rain Man. That label is going to do a lot of harm to people who don't deserve it and are already working through an incredible amount of difficulty.

Deleting the term "asperger syndrome" from the DSM is not the solution if you're only worried about bringing benefits to more people. It certainly doesn't help neurotypicals. If you want to make help available to people with "lesser" diagnoses, the solution is to MAKE HELP AVAILABLE TO PEOPLE WITH LESSER DIAGNOSES, *not* to simply remove the lesser diagnosis from the DSM entirely.

EDIT: Also, I feel like they're trying to tell self-diagnosers that asperger syndrome is just a type of personality and not the disability it so often really is. Someone might appear to be doing okay in life and therefore not require a diagnosis and help, but the sensory issues, etc. are still there, unacknowledged, ready to erupt without warning and cause immense damage. Discounting people because they were one check-box short of making the cut on a pre-defined list is really upsetting to me. I more than meet the DSM-IV criteria, but I know several people who were denied diagnosis because they were literally just one symptom too few, and they are still struggling. How much worse will it be with DSM-V? How many people are going to seek a diagnosis of autism, when before they had the less-scary possibility of going for a diagnosis of asperger syndrome?