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.