Language and Autism: The impact of penumbra and generalized instances, on debates about the existence of, and functioning levels within, ASD

Example of antumbra using window and shutters

Image via Wikipedia

I want to make it clear from the outset that this post is an attempt to get my own head around these issues. So if you can see an error in my own reasoning, I strongly encourage you to point it out, and I thank you in advance.

Language is a tricky slippery monster. Many people are thrown by its uncertainties and variance, and when faced with those challenges, conclude that language lacks meaning; that it is inherently fluid and always determined by something other than a dictionary (such as solely by the author’s intent). The fact that these arguments are made using language – and that we understand those arguments (as weak and mislead as they usually are) – belies the central tenets of the claim. Instead of delving further into the philosophical aspects of the discussion at its broadest levels, I want to talk about how all this applies specifically to autism. I’ll start by talking about this thing called a “penumbra”.

The penumbra of a term refers to its “edges”; where the definite cases meld into the maybe. For the purposes of autism, you’d find the penumbra of autism where it moves firmly away from “classic” autism, and starts to slip into harder-to-diagnose cases of high-functioning autism (such as in mild instances of Aspergers or PDD-NOS). (If that term “high-functioning” bothers you, hold your horses until the end.)

It is a common feature of language, that terms have a definite centre where we can identify an instance without debate. Just because these words’ meaning getting fuzzy at the boundaries – or we can’t pin down the definitive characteristics needed to say something is or is not “X” – doesn’t mean the word has no meaning and is never correct.

Similarly, all might agree that person Z has autism, yet argue whether person Y has autism because it’s close to the boundaries, that lack of certainty does not undo Z’s diagnosis; it’s just an observation about the difficulty of drawing lines at the penumbra. I’ve seen some people do a fallacious slippery-slope, once they realise that not all cases of autism are straight-forward diagnoses: They conclude that autism is such a nebulous term that anyone might fall within it, therefore the term is inherently meaningless / corrupted, giving reason to doubt that autism is anything other than a version of usual mental retardation at one end (please excuse my terminology here, it does serve a purpose) or a type of personality variance at the other.

There is a related problem that arises because of the nature of autism being a spectrum disorder: If someone doesn’t understand that the core features of autism are observations across a number of fixed categories, they will not understand that the instances that fall within each category can differ. Even medical professionals can and have made this error – such as those who think anyone with autism must be a toe-walker, or have sensitive ears. They are mistaking concrete instances for the broader categories (as well as making an error about how autism is diagnosed).

Some people argue that the very nature of the variance suggests autism is a made-up condition, serving some nefarious purpose: Whether they say it is so parents can feel less guilty about the product of their bad parenting, or less inferior for having had a “retarded” child, or the parent is just after extra money and extra help for their child on the grounds of a slightly different personality than other people. Just as autism has a penumbra of application that make people mistake its existence, it is also a spectrum disorder that makes people think the variance is at odds with the certainty of its existence.

There is a more general and common problem here, than just confusion about how autism is diagnosed: These people are making an error about the direction of the language. They are working backwards from a confirmed example (person D definitely has autism, person F is different, therefore person F doesn’t have autism), instead of upwards to the example (how was person D diagnosed): From the specific to the general instead of the general to the specific. This is not just a problem because of how autism is diagnosed and defined, though it is a frequent problem when talking about autism with less experienced members of the public, because of how it is diagnosed and defined.

Being able to articulate where they are making an error – and that the error is not an unusual one or one specific to autism – makes it easier to correct them: It is the difference between replying “that’s like saying a whale isn’t a mammal because it lives in water, you’re thinking about this the wrong way”, rather than having to cite the diagnostic criteria for autism and explaining ways in which it differs between individuals (though you will no doubt get to that point if the discussion continues).

The same claim and errors are made about the use of the terminologies “high functioning autism” and “low functioning autism”. It is pointed out by some that it is too hard to draw the line between someone who is high functioning and someone who is low functioning, therefore the terms are redundant. Again, they are treating the penumbra as if it undercuts the term entirely. Just because some high functioning people show low functioning, and some low functioning people show high functioning, does not mean that there are not some people who are very clear instances of low functioning autism, and some people are very clear instances of high functioning autism. If a penumbra is too large, it can – arguably – eclipse the function of a term, but that is a different argument from putting forward examples where it is hard to determine high from low functioning autism.

Again, an error is made when people point out that someone can move across the spectrum – starting out low functioning and becoming high functioning – therefore the term is redundant because it lacks permanence across time. But by the very act of identifying that that person was once one type, and then the other, the arguer has undercut their argument that the term cannot be used to describe how autism is (and once was) affecting an individual. It is not an inherent part of defining the level of functioning of an autistic person, that that level never changes.

I should add that neither are the terms inherently offensive. It is descriptive. Any moral judgement added to it is done by the reader. (Admittedly if enough people found the term offensive, it may become generally considered an offensive term, but even words like “retarded” retain meaningful and accurate usage.) In as far as “functioning” for autistic people is tied to an IQ measure (and it sometimes is), it is an unhelpful and un-necessary terminology, because IQ is hard to measure in autistic people, and can be talked about as a completely independent question to how well an autistic person functions in the world.

However, the way the term is commonly used among the professionals and parents I have interacted with, “functioning” references the ability to function within the world – that includes self-care skills, communication and social ability. Ability, and not just preference: Low functioning autistic people are not those who have chosen to (for example) not socialize or communicate, they are rather those who cannot do so (though this ability can change). I have seen high functioning autistic people claim that they are low functioning because they choose not to communicate by words, preferring the written word, or choose not to socialize, even though they could if they were put in a situation that they must. It seems to me that the ability to consciously make that choice – where many autistic people cannot – suggests they are high functioning.

I have also seen instances of people claiming they were low functioning, because they do not always function at a consistently high level (do any of us?). The capacity to usually (even if not always) function at a high level, strongly suggests someone is high functioning. But you see already that we have moved into the penumbra, and it is here that the debates get messy and emotional, when really all that’s happening is what is quite natural to language; the fuzzy edges are being put under a microscope, and found (surprise surprise) to be fuzzy, and debatable.

The terms high and low functioning nevertheless serve a function in terms of allocating limited resources, and talking generally to the populace about how autism affects an individual, in a way that simply saying “my child has severe / mild autism”, does not. Just because it is a spectrum among people, and indeed across an individual’s life-time, does not undercut the purpose of using the terminology about level of functioning.

If the terminology of functionality is deemed too offensive, then I see no problem in replacing the terminology with other words, if they also successfully demarcate that there is indeed a spectrum here of needs and abilities. Yes it would be a lovely world if every individual was treated directly according to their individual weaknesses and strengths – autism or no autism – but the fact is quite simply that some autistic people need extreme levels of support and resources just to make it through the day, whereas others do not. Pointing out, and acting on, that simple and vital fact, cannot reasonably be considered “offensive”.

Here too we see people making the error about confusing an instance with the general term. Just because they can point at person X and say “here is someone who is not strictly speaking high or low functioning” or “here is someone who is considered low functioning, yet this other person who is also called low functioning is very different from them”, does not mean they have disproven the categorization. Yet that is exactly the sort of argument I have seen time and time again.

In summary, when people disagree with you about whether autism exists, or whether particular terminology applies to autistic people, they might be struggling with getting their heads around the concept of the penumbra, or be moving from specifics to generals. It might feel like they’re making an immoral attack on your child, but replying emotionally and defensively – though understandable – is going to be less effective than pin-pointing where they’ve gone wrong and trying to correct the error. Otherwise we’re all just sitting around banging tables loudly at each other, and not convincing anyone of anything except our respective passions, which were never in dispute.

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11 Responses to Language and Autism: The impact of penumbra and generalized instances, on debates about the existence of, and functioning levels within, ASD

  1. KWombles says:

    Wonderfully said! One of the larger problems is that people use terms differently and even when one operationalizes the term so that it is clear what one means by it, people who use the term differently will refuse to acknowledge the difference in usage.

    Other examples in the autism world where things are quickly misunderstood are theory of mind and empathy.

    • I’ve come across those topics quite a bit lately too. I’ve particularly been thinking about writing something about empathy, but I’m still researching the confusions and various uses of the term. I’ve found your own pieces about empathy quite insightful.

  2. mamafog says:

    Once again you are writing about a topic I am thinking about. Autism is hard to understand, especially for those on the outside.

    I understand the need for qualifying terms like high or low functioning. But I always feel like there are people being ignored when we talk about only high and low functioning people with autism. My daughter (at her last assessment over a year ago) is considered moderate functioning. I think these terms need to be much better defined because so many important choices are made based upon them.
I attended a training for our state’s services for autism, and they said that they do not use the terms high or low functioning because they do not think that anyone is high or low functioning all the time. It is an nice attitude, and accurate in some ways. But inaccurate in others because the state does provide less services for people with Aspergers.

    The school department uses the terms, and so do play groups, therapy and recreation options. Another autism Mom suggested an activity for my daughter, and I said but it says it is only for high functioning children with autism. She says, I’ve been to the class and seen children who are lower functioning than your daughter. Things like this are so subjective. That is part of the problem, for me at least.

    • There are definitely problems with inconsistent uses of the terms, and arguably with the uses of the terms at all, which is why it’s so important to be clear about what’s wrong with them. If they are entirely inaccurate and never helpful, that’s one thing. If they are only accurate and helpful for referring to either end of the spectrum, then they still serve a purpose for allocating resources (for example).

      There will always be people in the middle of the categories, which should mean they can perhaps fit nicely into either category – so if a recreation was aimed at high or low, then someone in the middle (per se) could choose to go to either and get something from both.

      There is room for improvement in the models of high vs low functioning – no doubt – but any replacement terms or models need to fulfill that primary task of responding to the hugely different levels of needs and abilities across the spectrum.

  3. sharon says:

    So well thought out and articulated. I too had been recently reflecting on this notion of high/low functioning and how this kind of narrative can be used to dismiss and nullify all sorts of perspectives. It’s difficult to base solid understandings on fluid constructs as you say.
    I will be interested to hear your thoughts on empathy. That is a complicated and multi layered topic. You are a brave woman.

  4. Bill says:

    Imagine a world where a disease had been defined by one of its obvious symptoms, say, a sneeze. We would walk around saying, “Every Spring my child has sneeze”. Another might say, my child has sneeze from time to time, but he also complains his throat hurts and green stuff comes out of his nose. Another parent might say, my child had sneeze, and she had a terrible fever and muscle aches and was out of school for a week!
    Of course, we actually would say that the first child had an allergy, the boy had a cold, and the girl in my example had the flu.
    Autism is a symptom, coined independently by both Kanner and Asperger, for self-absorbed behavior. When we go around describing a syndrome by just one of its more obvious symptoms, we are setting ourselves up for problems; we are confusing people, we make apples and oranges comparisons.
    We know there are “autistic” people out there who are actually fetal alcohol syndrome. Some are actually fragile X. Some are the result of very targeted brain damage, like for instance the thalidomide autists. Some are the results of gestational damage from other prescription or non-prescription drugs. Some are the results of viruses such as German Measles. Some were preemies, some got nearly strangled by the umbilical at birth. Many of these physical or genetic causes also damaged other areas of the brain or nervous system, and the child may be retarded, have vision problems, or some degree of deafness.
    There is a large group with inherited Asperger’s Syndrome or Autism, what some have coined “essential autism”. Some inherited it, but as a result of a one time only gene defect.
    We struggle to include everyone on a “spectrum”, but does that serve the greater good?
    If a significant percentage of autisms are caused by birth defects, then we should be contributing to the March of Dimes or whatever best resources stop birth defects. We should fight the war on drugs and discourage alcohol. We should encourage vaccination against viral diseases which can cause birth defects.
    If we are searching for the genetic cause of essential autism, and we are searching the genes of someone with a birth defect, we are wasting time and resources, and muddying the waters in the search for the genetic cause.
    We can argue about which training or therapy results in the most improvement, and we will be doomed to argue forever if we can’t open our eyes to the concept that the therapy which works best for someone with essential autism very likely will not be the optimum therapy for someone with birth defect autism.
    Many people in the autism community have been treating this like shades of gray, when it is in fact different colors, apples and oranges.

    • Excellent and insightful comment as always Bill. And I agree with everything you have said here. I hadn’t thought it through to the extent you have (though my less-well-formed musings were heading in that direction). You really do appear to have a gift for picking up the pertinent points of a debate, and expressing them in a way that provides clarity to the issues.

  5. Pingback: How Extensive Is Autism’s Penumbra? | Neurodiversity

  6. What “is” autism? What do all have in common, low/high, genius/ID ? Atypical language aquisition is my thought. The degree of communicative disability for whatever reason seems to determine the needs of the individual.

    Adaptive abilities determine functional abilities for the child, the more they are able to adapt, the more functional they are. Those abilities may be innate or arrived at therapeutically, medically, or through accommodation .

    Looking at behavior, without attempting to remedy language inadequacy is not accommodation, but it is much easier for the parent/teacher/therapist/doctor. I’ve been there, on all sides but medically, and I know. Unfortunately, I, like so many people had this idea in my head of how kids ‘should’ act. It didn’t take into account atypical communication aquistion.

    Human behavior flows from three main sources: desire, emotion, and knowledge, Plato said. I think that’s true regardless of the label. When desire, emotion, and knowledge are frustrated by communicative disability, trouble ensues. We are all only human, after all.

    After 6 years of Speech and OT, and hours of my own work put in, my son can “pass”, as if he never had a language aquisition problem. But the wiring that caused his original disability is there and will always be there. The world still has expectations of how he “should” act, and it’s not necessarily how he does.

  7. Fascinating. And I learned the definition of penumbra. Love that.

    Your distinctions make sense, but most people use HFA and LFA out of that academic context…and that’s where the confusion sets in. I think it’s all in the nuances around the usage and the speaker’s and listener’s intentions – too often not readily deciphered. Thanks for sharing this with me!

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