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Autism

I have observed constant fighting over which one term should be used for autistic people (sometimes shortened to “autistics”), what we should be called by others, others believing it’s subjective and therefore polite to ask for preferred terms, accusations of insensitivity for not using “person first” language—person with autism has been rejected by many who joke that we are not “with” our autism—while all kinds of autism research tries to keep up with this terminology, I’m not finding recognition that there are essentially two separate components of verbiage: having language and speaking it.

Those of us who don’t have language (nonverbal) are high support needs by definition, whether they are speaking or non-speaking. Currently, within the autism community and those who are joining by learning how to talk about autism, when someone finds out a person is autistic, the first question is whether they are speaking or non-speaking. This question does not answer whether they have language, which is to say they are able to communicate—non-speaking autistic children and adults have always been able to gain access to language through writing, and AAC (Augmented and Alternative Communication) devices have been developed for non-speaking people to have a digital voice alongside the advancing technology for text-to-speech in video editing applications.

When a person does not have language, and those with language attempt to train them to speak, they may acquire the ability to speak but not an understanding of how to use language for autonomy in the world. There is a threshold, a point at which one crosses over into language, and then they can learn from there (see “Words” from RadioLab). . Understanding autism may depend upon making this distinction, which has nothing to do with behavior, capacity for self-perception, or support needs: we either have language or we don’t and we are speaking or not. The diversity of needs and abilities is covered by the framework I’ve outlined above because the terms do not strictly mean “always speaking” or “always has language”—they are baselines; many autistic people experience selective mutism (including myself). When the answer to the first question most people ask about an autistic person is that they are non-speaking, it is generally meant that they do not speak because they cannot speak, not that they choose not to speak. Some people gain the ability to speak with training. For non-speakers who will never be able to use their vocal chords to speak, it is important for all of us to accept this is true.

How can someone speak if they are nonverbal (do not have language)? To use verbiage or to be verbal is to have language: one can have language and be unable to speak it. Speaking is integral but not necessary to learning any language as any language can be written. It is more difficult for us to understand how someone could speak without having language—when they do, the person is perceived as simply mimicking speech without intention or understanding. That’s almost it: if we don’t have language, we can’t understand what's being said beyond simple yes/no commands, visual demonstration or pointing. But the assumption has been that these are people who can’t learn, leaving many non-speakers who have language but no way to express it experiencing life locked into their minds. Conversely, to be speaking yet nonverbal subjects one to being approached and taught as if they have language for being “able to speak” when what they have is echolalia.

Echolalia is a condition that can be understood when it is correctly identified but when it is instead taken as regular speech, it is misinterpreted as those who hear it project meaning onto the speaker according to an understanding based on allistic (n0n-autistic) people who have language, historically resulting in the misperception of mental illness. In those social environments such as a family gathering, a college party, a work or community event—anywhere non-autistic people (allistics) are aware they are being judged—they have a tendency to decide that any sound, any expressed emotion, however soft (such as a sigh) is personally directed at them for the sake of communicating this judgment (a soft sound can be interpreted as passive aggressive but so can silence and a blank facial expression); that autistic people are simultaneously notorious for not paying attention to other people makes me laugh every time.

Nonverbal emotional reactions to thoughts about the past, understanding something at a long delay as in days or weeks, often means reacting to these thoughts by laughing, making a whiny noise, crying to oneself, etc. Witnesses to these events apply the autistic person’s behavior to their understanding of their shared present environment, rather than recognizing it as possibly an “echo” from the autistic person’s memory. When the autistic person stands out in this environment, the collective perception is that they are laughing, screaming, or crying in reaction to that which everyone else is paying attention, and there is nothing the autistic person can do to correct the misunderstanding.

This is experienced by all kinds of autistic people, and when it happens to me, sometimes I am able to remove myself and explain, but I can still forget I need to add that these reactions are not directed at others in the space, were not necessarily triggered by what was going on, that I wasn’t laughing at what I heard someone say, or crying in response to someone walking into the room. I also forget that in social engagements, what people think happened matters more than what actually happened, and while in life you don’t usually have a stage upon which to give your explanation, most people don’t want to hear it.

Many of us want to believe that if those in the environment knew about autism, they would filter their perception, applying knowledge of something like echolalia because they learned the term. Sadly, informing people someone is autistic, or educating people who don’t have an autistic person in their personal lives, is typically met by the unrelenting assumption that this means the autistic person and/or their advocates want social passes for bad behavior, an acceptance of an offensive person rather than accepting that their first interpretation of that person’s behavior was incorrect.

Known for hitting ourselves, I do not think autistic people generally operate with the knowledge that being perceived harming oneself is emotionally harmful to witnesses. From what I understand, when an autistic person hits their body repeatedly, it is an action that relieves muscular tension. Autistic people tend to carry extreme muscular tension without being aware of it (interoception), and that can be caused by shallow breathing, sitting in one position for hours, standing on the edges of our feet, and other default postures that harm us without harming others. Relieving muscular tension in the jaw, neck, forearms, legs, is something autistic people may need to be told to do—if we aren’t told this will be an issue, and we don’t have people in our lives who understand this need, we may end up banging our arms on doorways, on our neck and shoulders, as we struggle to regulate our nervous system, as we struggle to breathe, much less relax.

When telling an autistic person to breathe because they need to calm down doesn’t work, when the autistic person is more upset by this, the interpretation may be that person has oppositional defiance, is being childish, or is otherwise hypervigilant. It is important that while autistic people learn breathing helps relax the muscles, non-autistic people learn that resistance to this command is likely because the autistic person is being misunderstood. From the autistic person’s perspective, it is often that they are being told to calm down and breathe in order to dismiss what they have said because of the way they said it.

When I got to an episode of The Extraordinary Attorney Woo in which she meets another “person with autism” or “autistic adult” many would call “low functioning”, “intellectually disabled”, “nonverbal”, or ideally “high support needs”, the trial hinged on his ability to understand the line of questioning, and respond: in the episode they do not call his speech “echolalia” however they accurately represented it—they just didn't know what to make of it other than his spoken responses, while clearly articulated, were nonsensical.

Reading excerpts from my memory series, it is mainly ironic to me that I did this after rejecting an autism diagnosis.