8:40am June 30, 2014

No longer have AS?

youneedacat:

teppeny:

I’d love to know people’s opinions about this.

If you simply go by the diagnostic criteria, is it possible to become cured, or to outgrow asperger syndrome?

To be diagnosed with AS you need to meet this criteria:

“The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.”

So if you had these impairments when you were younger, but no longer are affected to a clinically significant degree, would you still be clinically diagnosable? If you’re not, does that mean AS is curable or possible to outgrow?

What do you think is actually meant by “clinically significant impairments”? I’d be really interested to know if people who no longer think they’re disabled, think they do or don’t meet this criteria.

The similar criteria for autism is:

“(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) social interaction
(B) language as used in social communication
© symbolic or imaginative play”

According to this criteria, does it mean you could be diagnosed as autistic if you had delays as a kid, but are no longer affected to a clinically significant degree? Would that mean you can “outgrow” AS but not autism?

What do you think the wording for the criteria should be?

I don’t really give a crap for the wording of criteria most of the time, because criteria just aren’t my cup of tea for how to describe something.

But IMO they don’t have criteria appropriate for adults. They just don’t. Some adults manage to keep the criteria their whole lives, and that’s fine. But other adults move on to more nuanced criteria that are not in there. And yes they are still autistic.

Many DSM things have a code for “residual”, like I know people who were diagnosed with “residual autism in an adult” back in the day, who would now just be diagnosed with autism. Residual would be one tidy way of handling situations where people still clearly have traits but have moved beyond the criteria of something.

I don’t like it. The idea of autism residue doesn’t sit right with me. But it would work.

One of the problems I have with the idea of “residual autism” is that it perpetuates the idea of autism being primarily a social interaction disorder, rather than an extremely complex set of differences in sensory processing, cognition, movement, language, etc. You can have a person who appears— or can appear for a time— to be “like their peers,” or :quirky” but in a way that doesn’t hold them back from making friends. But by saying this means the person has outgrown their autism or has only “residual” autism, you completely miss the fact that the person’s sensory, cognitive, etc, differences may be massively disabling to them in other areas of their life.

If you only look at how a person socializes and speaks, or at the fact that they can hold a job and go to school, you miss all sorts of other things. People who can’t keep their living environment hygeinic. People who may be starving or malnourished because they can’t cook. People who are living with chronic physical disabilities and pain that they’ve never been able to articulate to a doctor because they were never taught the words for those things, or believe that they’re actually “experiencing something everyone feels, I just don’t try as hard as other people do.” People who may be on the edge of a massive burnout and don’t even know it themselves because they’ve pooled all their resources into a temporary and unsustainable state of “functioning.”

I know that believing I had outgrown being autistic, or was in the process of outgrowing it, or could not be that severely affected by it because I had never been judged to have a “clinically significant language delay,” was incredibly detrimental to me and left me wide open to predators, when I had massive gaps in my understanding of the world— things everyone expected me to simply know once I’d reached a certain age, but didn’t.

~Riel

Yeah all of that is why I don’t think it’s a good idea. I just think having the idea of ‘residual _________’ in the diagnostic criteria for every condition, helps solve a problem where the criteria are written in such a way that you can outgrow them but still clearly have the condition. Of course the criteria are complete shit, no matter how many times they revamp them.

I think my favorite out of any of the criteria were the DSM-III-R criteria. They went like this:

At least eight of the following sixteen items are present, these to include at least two items from A, one from B, and one from C.

A. Qualitative impairment in reciprocal social interaction (the examples within parentheses are arranged so that those first listed are more likely to apply to younger or more disabled, and the later ones, to older or less disabled) as manifested by the following:

1.Marked lack of awareness of the existence or feelings of others (for example, treats a person as if that person were a piece of furniture; does not notice another person’s distress; apparently has no concept of the need of others for privacy);

2. No or abnormal seeking of comfort at times of distress (for example, does not come for comfort even when ill, hurt, or tired; seeks comfort in a stereotyped way, for example, says "cheese, cheese, cheese” whenever hurt);

3. No or impaired imitation (for example, does not wave bye-bye; does not copy parent’s domestic activities; mechanical imitation of others’ actions out of context);

4. No or abnormal social play (for example, does not actively participate in simple games; refers solitary play activities; involves other children in play only as mechanical aids); and

5. Gross impairment in ability to make peer friendships (for example, no interest in making peer friendships despite interest in making fiends, demonstrates lack of understanding of conventions of social interaction, for example, reads phone book to uninterested peer.

B. Qualitative impairment in verbal and nonverbal communication and in imaginative activity, (the numbered items are arranged so that those first listed are more likely to apply to younger or more disabled, and the later ones, to older or less disabled) as manifested by the following:

1. No mode of communication, such as: communicative babbling, facial expression, gesture, mime, or spoken language;

2. Markedly abnormal nonverbal communication, as in the use of eye-to-eye gaze, facial expression, body posture, or gestures to initiate or modulate social interaction (for example, does not anticipate being held, stiffens when held, does not look at the person or smile when making a social approach, does not greet parents or visitors, has a fixed stare in social situations);

3. Absence of imaginative activity, such as play-acting of adult roles, fantasy character or animals; lack of interest in stories about imaginary events;

4. Marked abnormalities in the production of speech, including volume, pitch, stress, rate, rhythm, and intonation (for example, monotonous tone, question-like melody, or high pitch);

5. Marked abnormalities in the form or content of speech, including stereotyped and repetitive use of speech (for example, immediate echolalia or mechanical repetition of a television commercial); use of “you” when “I” is meant (for example, using “You want cookie?” to mean “I want a cookie”); idiosyncratic use of words or phrases (for example, “Go on green riding” to mean “I want to go on the swing”); or frequent irrelevant remarks (for example, starts talking about train schedules during a conversation about ports); and

6. Marked impairment in the ability to initiate or sustain a conversation with others, despite adequate speech (for example, indulging in lengthy monologues on one subject regardless of interjections from others);

C. Markedly restricted repertoire of activities and interests as manifested by the following:

1. Stereotyped body movements (for example, hand flicking or twisting, spinning, head-banging, complex whole-body movements);

2. Persistent preoccupation with parts of objects (for example, sniffing or smelling objects, repetitive feeling of texture of materials, spinning wheels of toy cars) or attachment to unusual objects (for example, insists on carrying around a piece of string);

3. Marked distress over changes in trivial aspects of environment (for example, when a vase is moved from usual position);

4. Unreasonable insistence on following routines in precise detail (for example, insisting that exactly the same route always be followed when shopping);

5. Markedly restricted range of interests and a preoccupation with one narrow interest, e.g., interested only in lining up objects, in amassing facts about meteorology, or in pretending to be a fantasy character.

D. Onset during infancy or early childhood

Specify if childhood onset (after 36 months of age)

The reason I liked those is that they specified a range of traits based on age and severity of traits, that gave the diagnostician a lot of leeway. And each trait gave a list of “Here’s what it looks like when this trait is more severe, here’s what it looks like when it’s less severe,” and there was no sharp dividing line where a person simply did not have the trait.

However that being my favorite doesn’t mean I like it. It just means it’s the least bad out of the options.

This is what the current criteria look like:

Diagnostic Criteria

A.      Persistent difficulties in the social use of verbal and nonverbal communication as manifested by all of the following:

1.       Deficits in using communication for social purposes, such as greeting and sharing information, in a manner that is appropriate for the social context.

2.       Impairment of the ability to change communication to match context or the needs of the listener, such as speaking differently in a classroom than on the playground, talking differently to a child than to an adult, and avoiding use of overly formal language.

3.       Difficulties following rules for conversation and storytelling, such as taking turns in conversation, rephrasing when misunderstood, and knowing how to use verbal and nonverbal signals to regulate interaction.

4.       Difficulties understanding what is not explicitly stated (e.g., making inferences) and nonliteral or ambiguous meanings of language (e.g., idioms, humor, metaphors, multiple meanings that depend on the context for interpretation).

B.      The deficits result in functional limitations in effective communication, social participation, social relationships, academic achievement, or occupational performance, individually or in combination.

C.      The onset of the symptoms is in the early developmental period (but deficits may not become fully manifest until social communication demands exceed limited capacities).

D.      The symptoms are not attributable to another medical or neurological condition or to low abilities in the domains or word structure and grammar, and are not better explained by autism spectrum disorder, intellectual disability (intellectual developmental disorder), global developmental delay, or another mental disorder.

Autism Spectrum Disorder           299.00 (F84.0)

Diagnostic Criteria

A.      Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1.       Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2.       Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3.       Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

    Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).

B.      Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1.       Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2.       Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

3.       Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

4.       Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

    Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

C.      Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D.      Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
(Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder
(Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)

This is why I want a residual option. People will age out of criteria this bad, and they will lose services. Residual autism may be a completely stupid idea. But it allows people to keep a diagnosis they would otherwise age out of, which can mean the difference between life and death for some people. The only good thing about these criteria is the sensory stuff, and that’s one criterion that’s badly written, at that. The rest is awful. Oh also the ability to add in autistic catatonia is a nice touch I guess. But it doesn’t make up for the rest of it.

Notes: