Tag Archives: Self-Advocacy

Autism (Self) Advocacy = Best Advocacy

I want our social media to be a safe place for persons living with autism. Here, I want to discuss comic books, education sciences, safety, and self-worth. My goal is to offer hope by invoking these topics, and providing positive examples.

Autism advocacy must evolve, because society always changes. However, our path forward seems foggy. In our household, we have two individuals with two different expressions of autism. Aside from kindness, love, and patience, “autism advocacy” will mean many different things under our roof.

Therefore, I am shifting my focus about autism advocacy. I will begin more self-advocacy and self-disclosure. You are invited along for my journey. These experiences will unfold in future blog posts, videos, and comic books.

An important and lengthy telephone call helped cement this direction. Talking with our artist, Sky Owens, he posed an important question: do we want Face Value Comics to be a socio-political soapbox, or a kid-friendly story about a hero like themselves? Why would an autistic person choose our comic book over any other title? Readers expect comic book stylized action sequences, so what abilities, motivations, or personality makes the Zephyr a hero to kids with autism?

As we expand our comic book line, these questions help remind me of my original goal: kids need heroes like themselves. This means curbing my own misguided self-righteousness against any number of specific social ills. Instead, larger and more relatable arcs can be represented.

In future blog posts, I will likely ask very candid questions. Make no mistake: I seek thoughtful answers, not conspiracy theories, political rhetoric, circular answers, nor “alternative facts.” With some questions, I will certainly appear unintelligent. I am. The longer I fight for autism (self) advocacy, the more I realize how much I do not understand. Aren’t some problems with autism tied to misunderstanding unwritten social expectations?

Our world changes daily. Information doubles exponentially. How do we juggle real life demands while being autism advocates? I submit self-care and self-advocacy are our best achievements. At the end of each day, being our best selves is the best form of advocacy anyone can do. I cannot address nor imagine what your “best self” is; only you and your loved ones can help. As for me, I ask you to follow me as I (re)explore autism self-advocacy. Together, we can learn. Together, we can be equals, knowing we try our best to be our best.

myra-z2

We’ve finished twelve pages of our next comic book. We have clear examples of emotive facial expressions, villains coded by color gradients (“Cool” colors = good; “Warm” colors = bad), PG-graded action/combat situations, steampunk imagery, and heroic endings (or cliffhangers). We anticipate a release this spring, and will continue to keep our fans apprised of news.

EFFECTIVE AUTISM (SELF) ADVOCACY, PART ONE

Being an effective autism (self) advocate means we hope for positive change. With streaming videos and other social media links, a deluge of often negative information floods our minds. In our online community, we also balance things like:
Our boss’ impossible deadline and another night of overtime work at the office;
Providing a nutritious dinner despite a new aversion to cooked vegetables or the color yellow;
Helping an educator understand how “inclusion” means more than sharing the same cafeteria; and
Seasonal allergies or Uncle Robert’s sudden appendectomy.
In this series of weekly blog posts, I want to teach you things I’ve learned – and continue to learn – along my journey with autism. I’m going to show you how to survive and thrive as an advocate. Following my easy progressive steps, you will become a BEAST!

Be an Effective Advocate with Social Temperance

A computer performs massive calculations, but we wouldn’t call a computer an accountant. Likewise, “being” something requires a mindset and more than just actions.
Loaded on alcohol or anger, we could make ourselves loudly heard. Would this be an effective way to share our messages?
We live among other people with very diverse backgrounds. Even with an autism diagnosis, one person’s autism may manifest differently than another similarly-diagnosed person. We must consider many social perspectives, including (and especially) ideas different than our own experiences.
Show compassion and mindfulness to our neighbors. Most of the problems surrounding autism advocacy are ones of ignorance, not intentional malfeasance. We must temper our actions and responses with intelligence and peace to accomplish more good works.
Before we begin BEAST training, please mindfully rest if you find yourself feeling like “T.H.I.S.:”

⌧ Tired
⌧ Hungry
⌧ Irritated
⌧ Sick

These multicultural, nonverbal biological needs demand our attention. First and foremost, effective autism advocacy must help ensure safety. We wouldn’t try to balance our checkbook while vomiting, or mow the lawn at 3:00 AM to cure insomnia. Likewise, we cannot be effective BEASTs without respecting our own mental and physical health needs.
When we feel like “T.H.I.S.,” we enter potentially-trying situations under compromise. Feeling like T.H.I.S., we cannot be compassionate nor receptive to other points of view while our eyes droop or our stomach growls. Take care of these needs, and return to the fight for dignity, respect, and rights on Thursday, for Part Two of BEAST training…
Finally, I know (and partially expect) some readers will creatively rearrange the THIS acronym into something much more memorable about feeling emotionally, mentally, and physically fatigued. Enjoy freedom of speech yet remember a shared audience of younger BEASTs, too.
I addressed my father’s recent heart attack and surgery and my terribly-timed laptop crash. Now, I rededicate myself to autism education, autism employment, autism housing, autism service transitioning…
I will be an autism BEAST!

ARE YOU FOLLOWING US?
If there is another comic book that was positively reviewed in a medical journal for its educational and therapeutic merit, please let us know! Face Value Comics appears in the the Journal of Autism and Developmental Disorders medical journal earlier this year.

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.