Wednesday, December 14, 2011

Shoes with toes (and sensory requirements)

Vibram five fingers, and other minimalist footware have started to get common enough that a decent percentage of people know about shoes with toes existing, but few people I've talked to know why people use them (except that they're popular for running). When people see mine they often question how I like them if they've heard of them before, or look strangely at my feet in confusion.

I've warn five fingers almost exclusively since Christmas of last year when I got my first pair. In this period of time the only time I got close to hurting myself while walking was while I was wearing boots. Even walking on ice, if I slipped with these shoes, I was able to react without risking hurting myself at all, despite these having what people view as a sole that isn't grippy enough.

The reason is simple, these shoes let me feel the ground through them. Normal shoes, I'm walking on a platform that isn't actually on the ground and have no way of knowing what is going on under my feet through touch. I'd recommend these shoes to people in general for this reason, but would do so even stronger for people who, like me, need to put effort into managing sensory integration.

ASDs, do tend to come with sensory "issues" - hypersensitivity, hyposensitivity, integration issues, or so on. Beyond that, I also identify with SPD (despite not having been diagnosed with that) - Sensory Processing Disorder. For people with both an ASD and SPD the borderline between the two is incredibly blurred. Both ASDs and SPD however cause people to have different sensory requirements than the norm; hyposensitive or hypersensitive, and avoiding or seeking input, the requirements are different.

Personally, I'd consider myself hypersensitive (without question) and seeking (though I avoid things that are headache triggers). Despite hypertasting, spicy food is something I eat rather than avoid; despite hypersmelling, I'll use something that's 50% peppermint oil when someone else would use aromatherapy levels; despite hyperfeeling, I want the input of as much detail of what's under my feet as possible.

Thursday, December 1, 2011

Autistics Speaking Day (one month late)

One month ago was Autistics Speaking Day.

One month ago I thought of starting up this blog, because it was something I was meaning to do.

One month ago I sat down at the computer and was unable to write.

One month ago was one of the few days since I started participating in the autistic community that I did not make a forum post.

Three and a half weeks ago I wrote my first post on here

Yesterday I found this autistic speaking day post.

Today all I can say is that even though she clearly is more severely affected than I am, that's the absolute best Autistics Speaking Day post I have seen.

And today I say thank you for letting me have an easier time than others with this. Thank you for this not being something I've needed to say because while those days are rarer for me, I've not been pushed on one of those days.

(And on the note of that blog, this post of hers is the best written thing I've seen about the use of the word autistic instead of the "person-first language")

My path to diagnosis and the diagnosis process

As I last covered what are the benefits of getting a diagnosis, it seems logical to actually complete this post about what the diagnosis process was like for me. As this is from my memory there are likely mistakes in the early parts of it - I don't remember exactly when everything was.

There are three main paths to getting a diagnosis - hearing about Asperger's (or whatever else) somehow, deciding you match the symptoms, and finding someone to professionally agree or disagree with your self-assessment; seeing a professional for other reasons and it being identified and diagnosed; and getting someone else bringing you to a professional to see about a diagnosis of something (usually in that case the person bringing you is a parent). I consider my process of diagnosis having taken 9 years and consisting of bits of each of these paths.

During the 2001/2002 school year I was in seventh grade. It was during this year that we split my math education off from the school system. During this year we also tried asking about me going up to the high school for math while being in the eighth grade the next year. The school system denied this request. This was the last straw and we started looking into me going to a different school, and decided on me going to a charter school (essential school specifically), in the fall.

It was also either that school year or the summer after that for some reason that I'm still unsure of, possibly being worried about bullies but I have no idea, that my sister and I each had an initial meeting with a psychologist. She decided that my sister had no reason to see her again after one or two meetings while it was worth it for me to continue seeing her. From those meetings I remember turtling a lot, not knowing what to say or how to make decisions (like normal for me), and going through the decision process of whether I should go into the 8th or 9th grade in the fall. (We decided for various reasons the 9th grade would be better, one of the people running the school thought I wasn't socially ready to skip a grade, 3 weeks into the school year they realized they were wrong, moved me up, and I was in a far better place socially after skipping a grade).

At some point she diagnosed me with social anxiety developed from being bullied in school. This ended up relevant when later in the year I ended up sobbing in school and in a terrible shape. In this new school we swapped who was in classes together every 6 weeks. One of these occurred and I was put into a class where none of the people I knew well were and one where most of the people were those who didn't do their work. I couldn't cope with this at all. Because of my social anxiety diagnosis I ended up with a 504 plan that said they couldn't place me in a class without one of the people I knew best. They dealt with this by always putting me and my best friend in a class together rather than having to deal with a larger set of people that they needed to have one of them in the class with me.

I don't know exactly when I stopped seeing her. I'm pretty sure it was during 9th grade. Whenever that was is also the first time I heard of Asperger's. Before that point I'd only ever heard of autism at the non-verbal level. I'd never thought it might apply to someone like myself. The last session I had with her she told my family and I that she thought I had Asperger's and that she'd be unable to help me anymore because she didn't work with people with ASDs.

So in 2002 or 2003, I first heard that I was likely autistic, yet at that point I wasn't diagnosed, and didn't go on to see anyone else. What I was told at that point was that because I was high functioning and female, it wasn't worth pursuing a diagnosis. The bias against being female and autistic was strong enough that it removed the little benefit that I'd have gained at that point as I was successful academically. The other thing I was told at this point was, like her not being able to help me anymore, that I'd not really get any help from anyone who didn't work with people on the spectrum. So the recommendation was for me to see someone who worked with people on the spectrum who didn't require a diagnosis.

Of course most people who work with people on the autistic spectrum want diagnoses, and because I wasn't diagnosed I couldn't work with them. This means that at that point I didn't see anyone because of the lack of diagnosis. I don't know whether I would have if I did have a diagnosis. So through tenth grade and the beginning of junior year I saw nobody for any of this.

Junior year was interesting when it comes to all of this. For junior and senior year I went to another different school - in this case, I had been accepted into the junior and senior year only exam school. This school accepts 50 students per year of those who apply, of their choice, and push these students incredibly hard junior year such that your effective freshman year of college that follows senior year seems like an incredibly easy break. While my parents have very low opinions of this school, it did a huge amount for me, though it wasn't simple even outside of academic situations. I had problems come up that should not have came up that, as I found out years later, meant that they almost kicked me out of the school.

Junior year I ended up having rather problematic miscommunication problems with multiple of the teachers, without my knowledge that it was happening. I had one teacher convinced that I was lying about doing my homework because of being uncomfortable presenting when I wasn't completely sure of what I was doing. (I'd done the work but I wasn't sure that I was right.) I had another teacher convinced that I didn't understand the foreign language at all because of not participating in conversations that I had no interest in nor knowledge about content of. Because of these types problems, we ended up needing a meeting about me not leaving the school. They ended up agreeing that I'd stay in the school as long as we pursued help for me.

This ended up leading to me ending up on anxiety medication and seeing a therapist. We managed to actually find someone who accepted me and worked with adolescents on the autistic spectrum. Her specialty was "social learning disabilities". I still don't think the medication was worth it - the first one caused interesting problems (I'd remember to do my homework and forget to turn it in), and the second one I was unable to tell if it helped and when I eventually weened off of it I ended up with near daily migraines. However, seeing that specialist was incredibly good for me. She worked with me using the knowledge of Asperger's rather than treating me like any other person and helped a lot. The difference between me at that point in junior year and when I went to college was something I could tell.

In college, well senior year of high school, I found the SFS. When I got there, the SFS was so aspie friendly that we ended up at one point with everyone in the room identified with Asperger's to some degree. This was incredibly good for me in a different way than my high school friends were (who I still feel far closer to and still trust far more, but didn't have this particular aspect of being able to relate on this topic).

Unfortunately, relating to Asperger's went a bit too far in the SFS at this point in time. It became such a big thing that it started bothering me to have people identifying with it with as little information as they had. It started feeling like with so many people involved people started holding individuals to expectations created because of other individuals who may or may not actually have been on the spectrum. Relating to this was good, but at the same time, we were going over the top. I no longer felt comfortable identifying with Asperger's. I stopped considering myself self-diagnosed. When I started thinking about it again I ended up deciding that I identified as not neurotypical. I wasn't sure what I was, but I was clearly not "normal".

The June 2008 was the first time I was on the lease of an apartment. The July 2008 my grandmother died. January 2009 I started my MQP (in major senior project). January 2009 my grandfather died. March 2009 my other grandfather died. Throughout this entire time the group of people in that apartment were not an appropriate one. We'd thought it'd work fine, but different needs for things like temperature just didn't mesh at all. I ended up crashing hard. My mental state couldn't deal with so much going on at the same time, especially so many deaths in the family.

April 2010 I got a new primary care doctor. She thought it was incredibly important for me to see a counselor after how that year had gone and how much it was affecting me. For all of 2009 I had basically pushed it off, focusing on academics, and when I finished my MQP in December 2009, I was unable to cope. I no longer had something to throw myself into and without something to do, everything that happened hit at the same time. We went through who was available in my insurance, found someone, I tried seeing her. She was good but hard to get to, looking back I agree that she wasn't worth the awkward travel, though she was far better than I expect out of a generic counselor. We tried looking for someone who would see me who worked with people on the autistic spectrum, people kept either not returning calls or being unable to take someone without a diagnosis. We found someone else for me to try, she didn't work at all for me, I regularly left her and went home in tears. That didn't work. We needed something else.

During this we process began the research of what it actually took to get my a diagnosis. My parents got a recommendation from a local autism resource center for a particular person for diagnosis (as well as some counselors we tried to get in contact with, but failed at). October 2010 we met with this person for the first time. We went through an initial review of me and my past. After this meeting he decided that yes, I should be evaluated for Asperger's, and submitted a request to my insurance for them to cover it. They denied it saying that they didn't feel it was necessary for me to be evaluated for some reason or another. When the second of those counselors failed so drastically my parents decided that we were going to just get the evaluation anyways, going ahead and paying themselves instead of via insurance. (Later the cost was included in the insurance deductible because of ARICA having triggered in January 2011).

July 8th, I had a 4-5 hour evaluation done.

July 14th I got the results, a diagnosis of Asperger's Syndrome, and an 11 page report of the evaluation.

The diagnosis process

This might should go in a different post, but I think of them together whenever I think of the subject, so they're going to go ahead and be together. I'll at least set it apart with the above header

The diagnosis process for me consisted of three meetings with a neuropsychologist - the background information, an evaluation, and the results meeting.

The first meeting was entirely background information, both my parents and I were interviewed about me at work (of which there was little), at home, and at school throughout my life. A wide variety of questions were asked including about my past with mental health professionals and why we were pursuing a diagnosis. This meeting ended with determining that he agreed that I was likely autistic and that further testing should be done to determine whether that is true.

The second meeting was long. I went in at 10 am and left between 2:30 and 3 pm. This meeting was the primary evaluation. These hours were spent primarily with me doing tests and answering long lists of questions on paper. For each of these he observed me taking it as well as looking at the results of the tests. There was also a bit more verbal questioning but not much of that.

The first thing I filled out was a way too long multiple choice question about general mental health, the Personality Assessment Inventory. Mostly this was long, though I might have confused him with some of the questions I asked while filling it out. They were certainly not normal questions.

The next major thing I did was an IQ test - the WAIS-IV one in particular. I definitely don't think my score on this was actually accurate but it got enough of the information necessary across. This was used to compare my IQ percentile to my later percentile on things to do with recognizing emotions in others. The reason I find it innacurate was because I ended up beginning to completely shutdown in the middle of it because of how the testing was going. I had to give quick definitions for words until I stopped being able to do so with the list he was giving me. I'm not sure whether he noticed that the point that I failed was as soon as the words became emotions based. This was fine, except that I was shutting down beyond just being able to answer those questions when I was unable to answer word after word, all of the same type. Also of note was the memory test where I had issues focusing on trying to remember the numbers being listed rather than putting the effort into trying to find a pattern so I only had to remember the pattern. I think I mentioned that to him on that subject. It was just so hard to not look for a pattern instead of just remembering the numbers.

I also had to do some arithmetic, reading, and spelling tests. I'm not quite sure why those were there. One of the reading tests was amusing however. He gave me a thing to read, told me I'd read it while he measured how fast I read and then I'd have to answer questions, and specified I had to read for content rather than speed. I asked him "What if I finish reading before the minute is up?" got the response "You won't", asked again "No really, what if I finish early?", got the response "Well, I guess you finish early then, but nobody's done that yet.".... So I read it and when I finished I looked up and said "I'm done" and surprised him. I think I finished in under half a minute. He questioned the reading for content and I reassured him that no, I really did read that quickly, I really had to ask him that question before hand. In my later report he noted that all he could get in my reading speed score was that I read faster than 99% of college graduates.

I also had to do multiple tests on executive function. This included the Trail Making Test, as well as the Conners' Continuous Performance Test. The latter one was frustrating. I had to click the space bar after every letter that popped up on the screen that wasn't an X (and only letters popped up). It didn't matter how much I focused, I kept failing to not click the space bar on the X. He eventually noted that my results on that were borderline ADHD levels, but when he gave me the self report scales for ADHD there was no way that I matched the symptoms on that

And then there's the tests that specifically have to do with autism diagnoses. For this I had the AQ test, EQ test, pictures of faces to match emotions to, voices to match emotions to, voices to match to faces, and stories that I needed to answer whether anything someone did was 'awkward', and why. I feel quite awkward not including more here with this being such a big part of the evaluation, but it really is far more straightforward than the rest of it was.

Anyways, the third meeting was when I got my results. He wrote up an 11 page report on what he saw from watching me and going through my test results. This meeting was going through the basic points through all of it, making sure that it made sense to my parents and I (as my parents went with me, it was my choice if they went). He asked after going through this whether anything he'd said was surprising, my parents responded no, and he then gave the diagnosis matching how he'd described me. I was then given my report that has been useful to have. How he went through this, giving the description before the diagnostic label was really the appropriate way to do it. If someone wanted a result they'd not be able to complain about the result when it occurred after the description, while if there were inaccuracies, they'd come up. That followed by specifying the describing the symptoms rather than the person (so the individual can identify as autistic or having autism) was a really nice way to get the results.

Once I got my diagnosis I was really able to start associate with this. Before that point I'd been too uncomfortable to do so much. Now, well, it rather turned into a special interest. Oops?

Wednesday, November 23, 2011

What do you get out of a diagnosis.

Well, I said I was starting this because of being tired of answering the same questions over and over. This is one of those questions, it was just asked again and I had to start going through the mental list rather than just linking to a post like my eventual response will be. Anyways for a list of things that I've gotten out of my diagnosis and others have mentioned getting out of their diagnoses.

The ability to work with specialists
This is in particular what caused me to get my diagnosis. Most counselors and people of that sort don't actually have knowledge about the autistic spectrum - and if they do, then it is often doesn't include actually working with people on the spectrum, just a researcher's view of it. While these people don't necessarily work with only people with diagnoses, its unusual for one of them to have the time in their schedule to take on undiagnosed patients.
Various sorts of therapy covered by insurance
A decent number of states at this point have laws regarding insurance and the autistic spectrum. These laws vary wildly from it not being able to be counted as a pre-existing condition, to requiring coverage of things that are not necessarily otherwise covered. In Massachusetts, ARICA is worth looking into. Speech therapy, occupational therapy, and the like are required to be covered by at least some sort of insurance. I've not taken advantage of this but have had it recommended to me that I should look into sensory integration occupational therapy.
Accommodations at work, in school, or in other relevant places
Accommodations are the standard thing that people get out of a diagnosis. These vary from having more time on exams, to taking exams separate from the class, to having all instructions written instead of given verbally. Personally, when I eventually retake the GRE subject test, I'm going to be needing to request a separate room with a non-smoking proctor, and the room not having florescent light bulbs. When it comes to work, I'm going to have a huge challenge finding the right accommodations to deal with my sensory needs (other than we've figured out I need a closet or something that's mine to hide in if I start getting a migraine from things getting to be too much).
Generic 'for disabled people' monetarily-based things from the government
These seemed just worth grouping together because they're all related. I get reduced fare public transit tickets because of my Asperger's (which is incredibly nice with the inability to drive and lack of income). It can be enough to qualify people for SSI and/or SSDI. With SSI you qualify for things like food stamps, Mass Health, and such without employment. In general, if someone need monetary assistance it'd be the huge pain that it is with the government, but its far more of an option than without a diagnosis.
Others understanding you better
This can actually be far more than people give it credit for. Assumptions that some of your actions aren't for other reasons going away can mean a lot.
A diagnostic report that helps you understand yourself better
When you get a diagnosis, you don't just get a paper with a label on it, you get a full report of the testing done. This is a description of some of your strengths and weaknesses, which you may have not known about before. This might be because of not having realized that people functioned any differently than you did. It wasn't until reading my diagnosis report that I realized that not everyone fully analyzed a situation before deciding whether something was "awkward" or such. The idea of intuitive understanding of social situations had never occured to me.
The diagnostic report also allows you to inform others about yourself
My doctor is interested in doing everything she can do to help me, but hasn't worked with another patient with an ASD before. She has a copy of my diagnostic report as well and is using that to help to understand me. The report is a formal way of giving her this information. It is also not me needing to explain details about myself that I have no idea how to put into words.

There may be more of these, and if I come up with more then I'll edit this, but this should at least be a useful list that I can link to.

Saturday, November 12, 2011

Lojban for communication about emotions

A few days ago jonored and I ended up in a discussion on IRC about what languages are good for discussing what languages are good for discussing various topics. Most people who were active in channel agreed that English is bad for discussing anything (other than it being the language we all knew), something like lojban is preferable for technical topics, and something like French is preferable for emotional topics. Their reasoning was that for topics that had anything to do with emotion you want a language that is more poetic than structured, so something like French is better than something like Lojban.

Of course I had to be the unusual one and I commented that I'd prefer something more structured in order to discuss emotions. I ended up discussing this more with jonored over lunch, and it came down to unstructured language is good for art-based communication (which is both a very powerful and useful mode of commutation, but not the default state for at least what seems to be most people). Simple discussion on the other hand, seems to me like highly structured, precise language would just be preferable.

Personally, I struggle a lot with any discussions about emotions. When I found the description of alexithymia on wikipedia earlier this year, it was the first time that I'd seen a description of anyone else having similar struggles with identifying and discussing emotions. It also was the first time that I'd heard that other traits of mine, such as the scarcity of fantasies, might be also associated with the same basic trait of mine. I do struggle with all three of identifying my emotions, translating my emotions into any spoken language rather than the generic concepts that I think in, and communication of emotions with other people.

In particular, the challenge I have with the communicating emotions once I can identify them in myself aspect comes from multiple aspects; two primary aspects beyond the simple translating thoughts to spoken (or typed) language are a need for what I say to be sufficiently precise and emotions just being a sufficiently complex problem in which applying logic does not allow for me to just go through the analysis and return an answer within even a semi-reasonable amount of time. (Not having responded to 'what do you think about foo?' within an hour is not reasonable when it comes to real-time communication.)

The discussion on IRC lead jonored to wonder, would it be easier for me to discuss emotions if I was using the system for emotions in Lojban rather than attempting to communicate via English and the non-verbal methods which ASDs are associated with weaknesses in. Rather than so many different words and the idea that one word 'should' in some situations suffice if you choose the correct one (no matter how crazy of an idea that is), this would allow people like me to construct the best description from a short enough list of ideas that it can far more reasonably be applied analytically.

The relevant part of Lojban is the attitudinal system. There are written words for 39 different concepts and their negations that tend to be communicated through non-verbal communication. These words, some intensities, some domains, and various other associated ideas are combined into a concept that is the emotional state being discussed. As there are only 39 of these which are explicitly combined, this is a short enough list that running through the list pulling out all identifiable aspects is a seemingly feasible idea.

So, jonored had me read through that chapter while he wrote up a reference sheet for me, and has been trying to help me get used to it by asking questions for me to reply to using that in particular. Unfortunately this is requiring quite a bit of care because if he asks a question that is too hard for me for some reason or another, I still won't respond for over an hour (and then not respond in a useful manner, more start stressing out about the fact I've not responded and this is wrong of me). The basic question is whether this would end up helping me be able to translate identified emotions into language and communicate them without being overwhelmed. There's not been nearly enough time to see how much it'll really help, but it seems a promising idea. At the very least the way its formatted allows for a list of words to be run through analytically without the problem that every other one of those that I've seen has of implying very strongly that only one word applies in any situation, or that there's a word that matters "most" somehow that is the one that "should" be given. I'm going to try to actually look into this rather than just face extreme perfectionism every time it comes up, and hopefully it helps some.

Whether or not it helps me it seems like it could help some people with alexithymia.

Friday, November 11, 2011

What is Asperger's?

Asperger's Syndrome, like everything on the autistic spectrum, is incredibly hard to describe because it varies so widely between people. One of the more common lines I've seen is "If you've met one person with Asperger's Syndrome you've met one person with Asperger's Syndrome." However, there is still the possibility of a basic description.

Asperger's Syndrome is an autistic spectrum disorder (ASD) along with Autistic Disorder (also known as classic autism or Kanner's autism - classic autism being my preference but not the label in the diagnostic manuals), and PDD-NOS. Asperger's Syndrome is often thought of as "milder" or "higher functioning" than classic autism, though these words mean little and there is a wide range of severity of symptoms among people in all parts of the spectrum.

Specifically, Asperger's Syndrome is an ASD in which there is no delay in speech, self-help skills, or creativity about the environment.  It is specifically associated with the descriptions given by Hans Asperger, an austrian physician who described the similarity of traits between 4 patients of his in a 1944 paper. As his paper was not translated into English until 1989, and autism as a concept separate than schizophrenia was first made in 1943, Asperger's Syndrome is a relatively new diagnosis.

Possibly the best way to define what Asperger's Syndrome is by the set of various diagnostic criteria.

The current version of the DSM, the diagnostic standards manual which is how diagnoses are made in the US is the DSM-IV, which came out in 1994. It was the first diagnosis manual with a diagnosis for Asperger's.

DSM-IV diagnostic criteria for Asperger's Syndrome

  1. Qualitative impairment in social interaction, as manifested by at least two of the following:

    1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
    2. failure to develop peer relationships appropriate to developmental level
    3. a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
    4. lack of social or emotional reciprocity

  2. Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
    1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
    2. apparently inflexible adherence to specific, nonfunctional routines or rituals
    3. stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
    4. persistent preoccupation with parts of objects

  3. The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
  4. There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
  5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
  6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Note that this specifically talks about what people see rather than what's going on.

Also meaningful is noting the additional criteria for classic autism as something like 80% of people with Asperger's technically meet the criteria.

Additional Criteria for Autistic Disorder

Qualitative impairments in communication as manifested by at least one of the following:
  1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
  2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
  3. stereotyped and repetitive use of language or idiosyncratic language
  4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
  1. social interaction
  2. language as used in social communication
  3. symbolic or imaginative play

However, other diagnostic criteria are likely far more useful. There is a new proposed version for the DSM-5 (which is coming out in 2013), in which the Asperger's diagnosis is merged in with classic autism and PDD-NOS into just "autistic spectrum disorder".

That diagnostic criteria is:

DSM-5 Proposed Diagnostic Criteria

  1. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

    1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
    2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
    3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play; and in making friends; to an apparent absence of interest in people
  2. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
    1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
    2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
    3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
    4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
  3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
  4. Symptoms together limit and impair everyday functioning.
The most descriptive criteria, and closest to Asperger's writing, is however the Gillberg criteria, one which is rarely used but tends to be a very good description of Asperger's. This criteria is actually descriptive.

The Gillberg Criteria for Asperger's Syndrome

All of the following six criteria must be met for confirmation of diagnosis:
  1. Severe impairment in reciprocal social interaction (at least two of the following)
    1. inability to interact with peers
    2. lack of desire to interact with peers
    3. lack of appreciation of social cues
    4. socially and emotionally inappropriate behavior
  2. All-absorbing narrow interest (at least one of the following)
    1. exclusion of other activities
    2. repetitive adherence
    3. more rote than meaning
  3. Imposition of routines and interests (at least one of the following)
    1. on self, in aspects of life
    2. on others
  4. Speech and language problems (at least three of the following)
    1. delayed development
    2. superficially perfect expressive language
    3. formal, pedantic language
    4. odd prosody, peculiar voice characteristics
    5. impairment of comprehension including misinterpretations of literal/implied meanings
  5. Non-verbal communication problems (at least one of the following)
    1. limited use of gestures
    2. clumsy/gauche body language
    3. limited facial expression
    4. inappropriate expression
    5. peculiar, stiff gaze
  6. Motor clumsiness: poor performance on neurodevelopmental examination

I personally find this last criteria by far the most informative, and tend to use it to show people for what's different between just being "socially awkward" and Asperger's.

The thing that does need to be noted about all of these diagnostic criteria is that they're made for children. While plenty of of us still fully meet the criteria as adults, and in fact, if you don't meet the criteria you cannot be diagnosed even if you met it when you were younger, there will be changes between a child and an adult. Adults often have learned how to make eye contact (at least to some degree), have made progress on physical clumsiness, and have created large numbers of coping skills of various levels of effectiveness. This does not change that this is a description of that person, even when they are able to memorize a script of what is to be said in each situation and have learned that carrying certain items make drastic changes to their abilities.

Monday, November 7, 2011


Okay, I've been responding enough to people about Asperger's topics, I should just write up things in one area so that I stop repeating myself, and so that I'm less prone to responding in multi-paragraph responses to simple questions.

As most people who might see this know, I was diagnosed with Asperger's Syndrome back in July. The diagnosis was far from surprising for anyone that I'm aware of, and was more of finally giving me the label than anything else. Since that point I've been researching the topic far more than I should be spending time on, because its something I can relate to unlike so much at this point in time.

I've been debating starting this for a while, ended up deciding to do so as I wanted somewhere to write up answers to questions well once and be able to link to them rather than responding to questions not nearly as informatively on the same topic time after time. The version of perfectionism that I still deal with post-Academy was really strong here, as the thing that's kept me from doing this until this point was  the lack of a name and the inability to change the name.

However, I think the name I came up with is decent. One of the questions that people online tend to ask me often is what I mean when I use turtle as a verb - saying that I turtle or such. It seems both self explanatory and related to my AS, when faced with things that on the surface level, whether this is something big or deciding what I want for breakfast, I physically and emotionally retreat into my metaphorical shell. I turtle.

Anyways, this is just a rambling introduction so that I have something here. I'll start adding more meaningful posts when I know more how to turn my thoughts into words.