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.