Category Archives: Autism Labels

Why we’re angry, dear Rosie…

Dear Ms. Rosie O’Donnell:

More than a week passed since we last chatted, albeit one-sided, about autism advocacy. Our fans wish you roaring success with your upcoming performance, and hope you are well. If people read anything more recent about you, I think many would be alarmed by the outpouring of hate directed at you regarding your armchair diagnosis of Barron Trump. We needn’t add fuel to that fire. Instead, I’m offering insight as a fellow rights activist and (self) advocate.

If people are angered by your lack of credentials to offer a diagnosis, I think their anger is misplaced. If people dislike you because of your own open identity, we aren’t likely to solve homophobia in this blog post. More importantly, I’m not sure you – or anyone who flippantly diagnoses someone with autism – understands the real damage.

You betrayed us, Rosie.

Within the autism community, many of us struggle with implied, unwritten social cues. However, most of us grew up and learned about the Golden Rule: Do unto others as you’d have them do unto you. Rosie, you broke that rule.

Spin your dialogue. Would you appreciate someone from the autism community saying another person was obviously gay because of how they look for thirty seconds? Even if that person’s experience and vigilance within the LGBTQ community would lend some credit to observations, is it anyone else’s right to out them as gay? If this approach is not okay with you, why is it okay for you to do something similar?

Hypervigilance with your own daughter’s autism diagnosis may lend you small credit, to recognize symptoms. Being good at computer work or mathematics makes someone autistic as much as (insert LGBTQ stereotype, here) makes someone gay. We fight hard to correct social misperceptions; please don’t add more misdirection.

We could presume you have nothing but benevolence towards a man and his family. Refresh my memory: is this the same man and his family whom you battled on Twitter during the Presidential Election this year? Do you doubt Barron Trump will have the absolute best medical care as the son of the United States President-Elect? Do you think you know better than a physician, Rosie? You act like you do.

…and that’s why people feel anger. May I offer a solution? Tweet how your intentions were born from compassion for a young person. Start a discussion about his father’s lack of understanding about autism, and the need for more openly autistic legislators and representatives. Share how you may have mourn(ed) Dakota’s lost potential following an autism diagnosis; we’ll understand and work through this very common grief with you. Invite more advocates to work with you, and stop making our advocacy work harder in 140 characters or less.

Let’s have tea next week, okay?

Be well and break a leg,

Dave Kot

Diarrhea and Low-Functioning Autism

After Thanksgiving dinner, I had diarrhea.

This example may give some readers pause as they flash signs of contempt or disgust. However, most people share a personal understanding of brief diarrhea. Exact causes may be difficult to pinpoint, but usually involve complex chemistry of fluid imbalance. Other factors, like stress, may warrant consideration, too. Still, most people can empathize and sympathize with this gastrointestinal challenge. In polite company, we refrain from sharing our toileting experiences. This is an unwritten social rule. I contend how diarrhea may only momentarily detract from our daily routines or work performances, though. As filthy as diarrhea might be, we understand it well enough from our own experiences, and still dislike addressing it. I wonder how proud actors feel whilst filming commercials for an over-the-counter anti-diarrhea medication.

Unconsciously, we might assign those negative images of watery feces to the person having diarrhea. We give the ill person distance, to avoid contracting diarrhea ourselves. We encourage bed rest, medication, and other things which completely remove them from future conversations until WE think they act or feel …

…wait for it…

“normal.” Despite our intimate knowledge of diarrhea, we automatically shun anyone who currently experiences it. We devalue their contributions because we assume their illness also affects mental alertness or other skills we otherwise expect. We seek to avoid contamination ourselves, and scrub our hands with anti-bacterial soap. Flush our relationship until the illness passes. We may want our friends to rest, or we may want nothing to do with a stranger who ate gas-station sushi.

Why are we so dismissive and lack compassion for an experience we likely have all shared and at least conceptually understand? Couldn’t a person with diarrhea still draw, still code, still do a lot of non-physically challenging things of value? I believe this person can add value. However, society caps their presumed potential until their diarrhea passes and they “act” less of an uncomfortable threat to our societal expectations.

1 in 68 persons has autism, and I believe more than this ratio have had diarrhea. Not as many people understand autism as well as diarrhea. Making understanding more difficult, we ascribe words like “low functioning” as a description. No, we may not come out and say “low functioning.” Instead, we use words like “high functioning autism,” which immediately supposes its counter-point: low-functioning autism. Likewise, we avoid invoking the word, “diarrhea” because we know peer judgement follows. Instead, words like “upset stomach” or “wiped out” seem more polite. What is a nicer way of saying “low functioning autism?” Yeah, there aren’t any, and you’re foolish to think aggressors won’t prey upon this distinction. Even worse, I contend some people with “higher functioning autism” also know how to throw bully-wolves off their scent by making such comparisons.

“I don’t have diarrhea; I’ve a tummy ache.” “I might have autism, but it’s ‘HIGH functioning autism.'”  Both sentences desperately seek acceptance, and use language to seem more approachable. I believe most people know what diarrhea looks like, but doubt many of these same people could identify two clinical needs which warrant a lower functional categorization. Instead, society fumbles with perceptions over what “low” functioning might be, even if their examples seem disconnected to autism. This becomes a dangerous enterprise, adding more doubt, myths, and missed opportunities for our community as a whole.

Instead, leave the adjectives “high functioning” and “low functioning” autism to the clinicians who crafted the words for their own medical processes. Stop manufacturing more reasons for polite society to fear or further distance themselves from an impolite conversation. As a collection of human beings, we cannot have easy discussions about loose stool, so why do we think invoking high/low functionalities will improve understandings of autism without similar contempt, disgust, or fear of known diarrhea?

Please add to this conversation if you have a counter-point. I boldly contend that we should erase the use of autism functionalities outside of our clinicians’ offices. Someone saying they’ve “high functioning” autism is really saying, “Yes, I’m autistic, BUT please don’t confuse me for someone with low-functioning autism, because I know you won’t give me any chances otherwise.” I dare anyone who identifies as having “high-functioning” autism to say it WITH a person who has “low functioning” autism also present, and then point to that person and call ’em “low functioning” to their face. OWN that glorified trap, if you must insist on its non-clinical use. Outside of educational/medical care, can you name any situation where identifying an autism functionality is helpful to the individual, the recipient of that information, or “polite” society (the same group who cannot stomach talks of diarrhea) as we seek greater acceptance?  Nah, we won’t have acceptance from neurotypical folk until we can accept ourselves.

YOU Decide – I Won’t Say a Word

In our politically-correct world, certain adjectives cannot clearly identify some groups. For example, ‘African-American’ replaces ‘person of color.’ Likewise, ‘mental retardation’ stirs ire, so we use ‘intellectual or developmental delays.’ Gone too are words like ‘actress’ and ‘stewardess;’ use ‘actor’ and ‘flight attendant,’ respectively. By example, let’s discuss something we can change: public perceptions about autism. Professional clinicians once labeled ‘homosexality’ as a mental illness! If social change can re-correct misinformation at a medical opinion level, I have hopes that my simple suggestion may also bear weight.

 

As it stands, I fear the word “non-verbal” encapsulates too many negative stereotypes. Simply stating that a person with autism is non-verbal damages public opinions (read: neurotypical persons’ reactions). I see two things immediately incorrect by continuing to refer to persons with autism as NON-VERBAL.

 

Problem One:

Did you take the Scholastic Aptitude Test (SAT)? No, we’re not engaging in discussions about cultural dis/advantages about the SATs at this moment. Think back – maybe even waaay back – to your scores or scores of someone close to you. Usually, SAT results fell into two categories. Do you remember the Math section of the SATs? What was the other categorization? For me, I also got a VERBAL score. Nobody asked me to talk during the test. In fact, testers were forbidden to speak during the SATs. Nobody spoke with me while I took the test, aside from a procter’s instructions.

 

The problem with labeling someone as “non-verbal” is we completely dismisses any written proficiencies with communicable language. Famous self-advocate Helen Keller was not non-verbal, even though she was mute. She knew words and communicated their value to (sometimes limited) audiences. I cannot think of Helen Keller’s experiences and still consider her “non-verbal.”

I offer to use the word “vocal,” to replace “verbal,” and more correctly capture the social interactions with someone who does not often speak aloud.

 

Problem Two:

At what percentage do we equate anything with an adjective, “non?” If I’m a non-smoker, I won’t smoke tobacco. If a book is listed as “non-fiction,” we expect it to include some historical realism and facts. If a person is non-verbal vocal, we may (incorrectly) assume that this person does not talk at all – ever. I believe this assumption undermines abilities of some people with autism who have limited, but some, vocal skills.

 

At what percentage does “non” capture? If my glass contains 99% fat-free milk, is this non-fat milk? Would things change differently at 98% of non-something or other? How about 95%, or 90%? Does NON really mean zero-percent 100% of the time?!? If so, what hopes do we dash by referring to persons as “non-verbal” or “non-vocal?”

 

From ancient Greece, we have an interesting word: PARA. This prefix means beside; next to, near, from; and against or contrary to something. I like the words, “near,” “from” and “against or contrary to” to better explain vocalization skills for some persons with autism. Does “near-vocal” more accurately, more clinically, explain some behaviors of people with autism that you know, or does using “non-verbal” paint a better picture or empowerment? If you wanted to become an evil dictator, which word would you select to undermine a group’s potential?

 

To this end, I suggest we use words like “para-vocal” to better explain future social communication expectations.

 

Use “para-vocal” instead of “non-verbal.” Otherwise, we may be unintentionally limiting our collective expectations about persons with autism. Otherwise, we may grow to expect absolutely nothing from someone we list as “NON.” Let’s presume competence. Some people with autism may never willingly choose to talk. However, we owe it to everyone, including ourselves, to think of many wonderful abilities and skills autistics have, and focus less about what a select group does not have.

 

If you like this idea, please share it and use it yourself. I’m not copyrighting this word. I will use it to explain our comics character, Myra. I will use “para-vocal” to explain this aspect of autism which I describe today. Do you like it? Will you use “para-vocal,” please?

 

Change and acceptance begins with us. To my friends at ASAN (Autistic Self Advocacy Network), this idea falls in line with “nothing about us without us.” Can ASAN stand behind this idea of compassionate and clinically-accurate autism descriptions? Will ASAN use para-vocal instead of non-verbal in the future?

 

…or, we can go back to using “non-verbal” in literature. I would be wholly within clinical accuracy to refer to my African-American best friend (Sky Owens, our comics artist) as “non-white.” How far would that very factual adjective get us as a society? How would my friend respond? Look, I’m quite certain that some autistic people who don’t easily or willingly talk won’t say anything, right? Society questions the “verbal” skills of some autistics, I find more glaring verb and adjective omissions from neurotypical so-called experts.