Star Ford

Essays on lots of things since 1989.

Severity and measurement of the autism spectrum

on 2009 December 29

What are the dimensions of the landscape of autism? Which dimensions are measurable, have truth value, explanatory power, and relate to disability? Or, more concisely, what is it? Society has advanced its understanding from a zero-dimensional point to a one-dimensional line, or spectrum, and now refers to people “on the spectrum.” However, it is clear that there are many spectra that are somewhat independent of each other: the “spectrum” is really a complex landscape. The more complex it is, the more vague or less defined it is, and the more care needs to be taken in labels and measures.

Autism is a mental pattern that eludes a widespread shared understanding. Some see it as a disability and others do not; some see it as a disorder and others do not. It is not inherently unhealthful, yet it can have many disadvantages, and also advantages.

Some of the common ways to discuss autism is in “severity” or a range from “low functioning” to ‘high functioning”. The diagnostic measures of Asperger Syndrome from Gillberg 1991 (from Attwood’s complete guide) include (abbreviated) difficulty interacting with peers, indifference to peers; being repetitive, inappropriate, compulsive, delayed, pedantic, odd, or clumsy. All of these are judgments of levels of disorder, or degree of difference from a norm, rather than measures of traits. The DSM IV measures of Aspergers are somewhat more measurable, but still are mostly measures of side effects that manifest themselves to others, and don’t really explain what is essential. They also don’t distinguish between traits that are disabling versus those that are just descriptive but not disabling.

To autistics, the professional measures often don’t seem correct, or are oversimplified. Some autistics discount any absolute difference between autism and Aspergers, or between high and low “functioning”. Some don’t feel that any kind of measuring is appropriate. Others don’t want to be stigmatized by the more extreme-sounding labels. Others don’t want services spread too thinly, and prefer a restricted use of the labels to focus the funding to those who need it most. In any case, it is clear that people are different in many ways, and those traits can be named and measured. If the traits are related to disability, it can be important to measure them because a disability can qualify someone for services that are not available to others. Perhaps ideally, society would assume each person is unique, and expect of each person the best we can offer, instead of applying expectations uniformly. Until then, autism will be a necessary label for people to get needed help or accommodation.

To that end, I have developed a first pass of an instrument to measure and express needs for help or accommodation in a somewhat objective and nonjudgmental way. It could satisfy the desire of society to diagnose and categorize people for access to services, while trying to remain true to the actual needs experienced by autistic people. The instrument is only a way to quickly summarize the degree of being affected by autism, so that teachers and other professionals can talk about it, without oversimplifying it as simply high- or low-functioning. It’s a compromise between black-and-white labels and no labels at all.

The instrument focuses on rights and opportunities, rather than just a description of unusual traits. It does not define a disorder. For example, hand flapping is a distinctive trait of autism, but it doesn’t signify a certain severity level, a need of services, or a health problem, so it is not included in the instrument.

Each measurement scale in this code is a letter, which is written one, two, or three times (C, CC, or CCC, indicating more of that particular quality or problem). The letters are:

C: Verbal and real-time social communication. “C” = Ability to verbalize on demand somewhat below normal, which could place the person at risk in some situations. “CC” = Person needs assistant or assistive technology to be able to communicate effectively, or tires very easily from a short time of social communication. “CCC” = No method of effective communication has been found.

S: Visual, symbolic understanding. “S” = Ability to decode linguistic and cultural symbols is below normal. “SS” = Person frequently does not use or interpret language and cultural symbols.

N: Noise. “N” = Certain sudden or loud noises cause pain or reduced ability to function. “NN” = Many common noises at typical levels cause pain.

L: Light. “L” = Certain artificial light sources (particularly flickering) causes pain or reduced ability to function. “LL” = Common lighting conditions cause pain or inability to function.

A: Social anxiety and over-stimulation. “A” = Person is easily overcome with anxiety in some social situations. “AA” = Person is often overcome with anxiety in typical social situations.

X: Executive function. “X” = Person sometimes loses track of things to do, and can be ineffective at taking care of some daily tasks. “XX” = Person often cannot follow through on most daily tasks.

T: Target. “T” = Person is at risk of being a target of bullying, violence, abduction, or being taken advantage of financially, due to being socially naive or prone to misunderstand risks. “TT” = Person is at high risk of being a target for these reasons.

To score yourself or another person using this code, note the letter combination that best describes the subject, or omit the letter code if the need is not prevalent. In addition to the letters, use “v” for variable, meaning the effect is inconsistent. For example, a person’s score could be “C, vXX” to indicate some ongoing verbal needs, an inconsistently high level of needs around executive function, and no impairment in the other areas.

Reviewing this instrument, some autistics have commented that it is impossible to stuff the complexity of real experiences into a simple linear system like this, because so much of real experience is variable and the scales are too interconnected. But this is only meant to be an instrument to summarize a real experience, not a complete description of it. Another reviewer suggested that creating an instrument like this is pandering to the lower elements of society that seek to divide and judge people.

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One response to “Severity and measurement of the autism spectrum

  1. Teresa Smith says:

    Helpful: for parents and early intervention people to look at areas of deficit with the hope of solving some problems: ie, noise, light etc.
    What about putting the letters in an order to form a word or nonsense word in order to promote use of the tool through memorization of the code word.

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