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TL;DR appears post-script.

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First and fore-most, let me say that functioning labels are not formal medical or clinical terms with regard to autism. They are not formally recognized medical conditions them-selves, and the DSM (or what i ironize as “the clinician’s dictionary”) no longer recognizes “low- or high-functioning autism” as official classifications (note that they were actually never diagnoses).

This distinction is necessary (in my opinion) when philosophizing about issues of “good and bad” (in this case, whether or not the good of autism functioning labels outweigh the bad). It matters, to a degree, whether a term is (institutionally and culturally) deemed either “official” or “unofficial” in that this understanding often shapes public opinion; acknowledging this additionally succors the philosophy by removing it (somewhat) from its vacuum.

To continue anyhoo, that “low- and high-functioning” are no longer “officially” recognized by Western practitioners is not to say that they aren’t or shouldn’t be recognized as “informal” autism identities/classifications.

Indeed, the “f”-word is commonly employed by everyday autists (e.g. here, here, and here); autistic parents of autists (e.g. here and here); non-autistic parents of autists (e.g. here and here); autistic medical practitioners (e.g. here and here); and on-and-on.

This is also not to say, however, that we shouldn’t continue to discuss the intents (i.e. definition[s]) and impacts (i.e. pros and cons) behind their use.

So what do “we” mean when “we” say an autistic person is low- or high-functioning?

Well, for the reason i generally dislike “we”-language (and prefer “i”-language), let “us” define “our” terms, beginning with what is universally agreed-upon: “Low” and “high”, in this case, operate as modifiers of “functioning”, to form the adverbs “low- and high-functioning”.

That’s it. That’s literally all that is agreed-upon regarding autism functioning labels. From here, there are contentions (by autists and non) at every turn.

There is no official or public consensus on whether or not to recognize “low- and high-functioning” as autism characteristics, and there is no consensus on how the words “low”, “high”, or “functioning” are even defined.

To illustrate, “functioning” here may refer to something formal, concrete, and simple, such as an autist’s IQ (i.e. “intellectual disability”); or something informal, abstract, and complex, such as an autist’s social behavior.

“High” here could refer to an autist’s low need for support services, as someone who is passed as “normal”; or it could signify an autist’s high need for support services, as someone who is passed (and marginalized) for being (oxymoronically) “too normal” and “too autistic”.

Thus, returning focus to one of our adverbs, a high-functioning autist would be defined as, per the examples above: one with an average or above-average IQ level, or a “high” IQ level; and/or one displaying primarily pro-social behavior, or a “high” level of respect for and commitment to allistic social norms (respectively).

These are very different definitions, used in mutually exclusive contexts, and that matters because the two are not mutually exclusive.

In other words, an autist with an average or above-average IQ (who would be considered “high-functioning”) can also be an autist displaying primarily anti-social behavior (who would not be considered “high-functioning”), and vice versa, as argued by an autistic blogger here.

I’ll say this now, and i’ll probably say it again:

A two-definition word that contradicts itself is meaningless.

If we can’t agree on how we define “low- or high-functioning” (regarding autism), how can we truly understand whether or not these labels perform a (predominantly) beneficial function? (Ha.)

Even more prescient: if we can’t understand whether or not it performs this function, how can we decide whether or not to evolve our lexicon beyond it?

This question is significant considering the amount of backlash (from autists and non) these labels have received.

Indeed, contrary to the evidence i provided earlier in support of functioning labels, “low- and high-functioning” are also terms commonly not applied by everyday autists (e.g. here, here, and here); autistic parents of autists (e.g. here); non-autistic parents of autists (e.g. here and here); autistic medical practitioners (e.g. here); and on-and-on.

At this point i have just so many questions:
Who is right?
Is anyone wrong?
Who is to be believed?
Can anyone be believed?
Can everyone be believed?
Which paradigm is more harmful?
Is such an ultimatum based in reality?
How are opposing data to be interpreted?
Should we continue labels that assist some?
Should we discontinue labels that offend some?
When does some become enough to justify action?

(Pulchritudinous. Perseveration pains, but it pays.)

The above image reads: “You know the sound that a fork makes in the garbage disposal?” with one person speaking to another; the speaker continues: “That’s the sound that my brain makes all the time.”

Getting back on track, i feel the need to reiterate an erstwhile point: a two-definition word that contradicts itself is meaningless.

Because there seems to be no consensus around the use of autism functioning labels, i feel compelled to address the question:

How are opposing data to be interpreted?

I know this is probably the most boring-reading question from the aforementioned list, but it is significant at the current stage of this thought experiment; just as i had to break down our infamous adverb to understand how autism functioning labels are used and discussed, i need to break down these arguments (for my-self) in order to truly understand them and, ultimately, which side(s) i side with.

In an effort to be efficient, i will analyze the arguments based on several factors: the polemic’s relationship to autism; the thoughtfulness/depth of their argument; correlational statistics from available autism studies and surveys; my personal experience as an autist; and last but not least, my heart.

Now let’s break ’em down.

Typically (from my perception), arguments against the use of autism functioning labels acknowledge both definitions, as in here. The argument presented here, however, seems to come primarily from non-autistic autism “stake-holders” (i.e. autism researchers and parents of autists), with fears pertaining to IQ-test flaws and reductionist (i.e. “high-functioning”) slash offensive (i.e. “low-functioning”) medical/clinical terminology.

To be clear, these are non-autistic (mis)conceptions of autistic experiences and should be taken with a grain of salt (although the research does cite “the loudest calls” from actually autistic advocates to eliminate autism functioning labels; more on that in just a moment).

Arguments for the use of autism functioning labels, rather, tend to (from my perception, again) acknowledge purely the latter definition (social behavior) via personal life-experiences, as in here. Conversely, the argument presented here seems to come primarily from actually autistic people, from fear of losing identification with an already stigmatized disability, thereby rendering high-functioning autists completely invisible.

Unfortunately, the former definition cannot be ignored (in my opinion) when considering whether or not to take concrete action on the (mis)use of medical terminology. Actionable change is too dire (again, in my opinion) to not explore as many perspectives as possible.

Fortunately, and paradoxically, there are (as i have previously over-cited) (sorry-not-sorry) many autists that have considered both labels’ definitions in analyzing the intents/impacts behind their use. Here are even more. 🙂

And remember when i said that research demonstrates “the loudest calls” from actually autistic advocates to eliminate autism functioning labels? It does. There has even been an 11,521-participant online survey on attitudes towards autism, conducted by an autist, which demonstrates that many people (nearly 41% of respondents) are comfortable using the term “high-functioning” while few (nearly 15% of respondents) are comfortable using the term “low-functioning”.

What is of import between these two testaments?

Two things.

One: what comes up must come down. Language is an entity all its own. We do not control it, i would argue, rather than wield it. To recognize “high-functioning” as a characteristic of autism is to tacitly recognize “low-functioning” as a characteristic of autism.

Because medical practitioners would likely characterize me as a high-functioning autist, i do not believe it is possible for me to speak to the impacts of such an identity on an autist who might be characterized as low-functioning.

In defense of this position, and without including my spare change, autism functioning labels are hated by many autists that could be characterized as both low-functioning and high-functioning.

Two: what comes up must come down. Language is slippery. When we talk about one (or more) thing(s), there is always more we are not talking about. As a wise person several times catechized me: What is not being named? What is not being spoken?

Based on the survey data presented above, what is not being named or spoken in our society is “low-functioning autism”. We cannot use discomfort, fear, or any other device to justify cherry-picking from our lexicon.

Therefore, if we as a society are not willing to acknowledge “low-functioning” as a characteristic of autism, we also, into the bargain, cannot acknowledge “high-functioning”.

Thus, my answer to the $64,000 question:

Do i believe in using autism functioning labels?

No. To be concise, i personally find them reductive, overly-simplistic, and dated, and my own exploration has shown me that their use has directly resulted in the disproportionate marginalization of already multiply-marginalized autists.

There seem to be many actually autistic people hesitant to eradicate autism functioning labels, but the research (available to me, and now to you, dear reader) indicates that these calls come largely from self-identifying high-functioning and/or aspergian autists, or non-autistic parents and/or researchers.

As much as my mind is inclined to side with any autist (especially over allist and medical rhetor/ic/s), my heart knows that as a multiply-privileged autist (e.g. White, verbal, diagnosed, highly educated, etc.), i have the power (He-Man, nice) in this situation to center and support those afforded less power, those afforded less of a voice in the global conversation around autism.

For example, nonverbal autists are too often excluded from mainstream autism studies and conversations. Additionally, queer autists and Autists of Color experience the same (and similar) tactics of marginalization and oppression.

In sum, while there is not currently unanimity around the use of autism functioning labels, it is apparent that arguments for their use tend to be reductive, coming from people (despite many being actually autistic) that identify as high-functioning/aspergian or non-autistic.

Those against the use of autism functioning labels, on the other hand, tend to be less reductive. Further, and despite the concerning amount of non-autists vying for an end to autism functioning labels, these arguments tend to come from autistic people of varying identities (as opposed to solely “high-functioning”-identifying autists).

Where do we go from here?

Conducting my own research, forming my own opinion, and writing this publicly-available thought experiment have not brought “us” (read: U.S. society and culture) anywhere.

Paradigm shifts require action, discussion, consensus; and many questions are still left unanswered.

Who is right?
Is anyone wrong?
Will we ever all agree?
Can we evolve our language to agree?

Automagically, autists (such as my-self) have taken to blogging, vlogging, and the internet to educate the public and provide alternatives to autism functioning labels:

Identify an autist simply as autistic.
Replace functioning labels with support labels.
Paint a picture of a person rather than a disability.
Simply self-disclose one’s abilities and support needs.
Reframe autism characteristics as strengths rather than weaknesses.
Educate the public on how to understand and respect the complexity of the spectrum of autistic experiences.
And on-and-on.

(I am personally gravitating toward [from this list] the second, fifth, and sixth alternatives.)

Remember, though, that paradigm shifts require consensus. Even autists that agree on eradicating autism functioning labels disagree on how to go about doing so (as evidenced by the [non-exhaustive] list of alternatives, some contradicting others, provided above).

So, for the final step of this thought experiment (yes, it’s almost over — thank you for reading up to this point), i want to examine (generally) the pillars of a paradigm in an attempt to determine where we could focus our efforts as we come together seeking actionable, equitable, and (hopefully) emergent shifts in the dominant neurodiversity and disability paradigms.

Using Ted Hutchin’s (2012) outline for guiding “new” systems of thought into the dominant paradigm, i will provide examples (of which there are many) for how each condition may be addressed to support the facilitation of these shifts.

What’s in a paradigm?

• Legitimacy via professional organizations
  • Example: Advocate for the prominent and dominant organizational stake-holders (e.g. Autism Speaks [controversial, i know], Autism Society, AANE, ASAN, APA, BACB, etc.) to call for the end of the use of autism functioning labels and the start of a new, emergent paradigm
• Dynamic leaders spearheading the emergent paradigm
  • Example: Center the voices of those calling out, of more-marginalized autists and neurodiverse folk; allow those historically left out of public research and discourse to begin introducing and defining the emergent paradigm
• Legitimacy via journalists and editors
  • Example: Advocate for the prominent and dominant journals/publications to disseminate and introduce the emergent paradigm, as well as the novel statements from professional organizations calling for social justice and social change
• Legitimacy via government agencies
  • Example: Advocate for government stake-holders (e.g. HHS, DOL, CDC, CMS, EDD, SSA, HRSA, etc.) to call for the end of the use of autism functioning labels and the start of a new, emergent paradigm; as well as an overhaul of accommodations to make them more and all-inclusive (while we’re at it, they should move funding from research into social services, too)
• Educators imparting the emergent paradigm to future generations
  • Example: Advocate for an overhaul of public and private educational curriculums to (1) remove the use and education of autism functioning labels and (2) institute the emergent paradigm (possibly develop programs for expert advocates/speakers to visit schools and better teach this information?)
• Conferences introducing and discussing the emergent paradigm
  • Example: I mean, this one’s pretty self-explanatory — all current conferences denounce the use of autism functioning labels and shift to discussing the novel paradigm; new conferences specifically tackling this issue could also be founded
• Media coverage
  • Example: Again, self-explanatory — advocate for/allow the prominent and dominant media outlets (i.e. TV networks/stations, advertisers, websites, newspapers, zines, radio stations, etc.) to disseminate and introduce the emergent paradigm, as well as the novel statements from professional organizations calling for social justice and social change
• Lay-groups embracing the core tenets of the emergent paradigm
  • Example: Advocate and educate on more local levels for smaller stake-holder groups (e.g. groups of autists, parents of autists, educators of autists, etc.) to begin learning about and adopting the beliefs central to the emergent paradigm
• Sources of funding to research the emergent paradigm
  • Example: Sort of already covered this in the fourth bullet-point, but government funding for neuro/biological research could be diverted to research on the emergent paradigm; grassroots fundraising is also an option

And that’s it! Not too bad. I am beginning to see how possible this change is. Now all we need to do is agree on what this shift will look like (no pressure).

As per Hutchin’s second condition, we need dynamic leaders to spearhead the introduction and definition of the emergent paradigm. This is necessary for moving in a more inclusive direction, and i am no dynamic leader. But i can help (and so can you) by centering the voices of those dynamic leaders, contributing to my ability and capacity, and joining in on the conversation.

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TL;DR

I do not support the use of autism functioning labels. The public (largely) does not support the use of autism functioning labels. Before a paradigm shift can occur, there needs to be consensus at least on how to begin moving toward some form of alternative terminology. This shift must be spearheaded by dynamic leaders; more-marginalized autists; those currently and historically left out of public research and discourse. Those not considered leaders can (and should) still contribute by centering the voices of leaders, providing to one’s ability and capacity, and joining in on the conversation.

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Thoughts? Leave a comment; start a conversation! Thank you for reading.