Most online autism advocacy resources provide basic information about autism and/or links to connect with social service providers.
My blog post identifies the most important resource for your loved one (or yourself) with autism:
Nobody else can easily adopt your role with the never-ending compassion, hope, and love you hold. No artificially-inserted, government-appointed care provider will be as invested as you. We must better address the needs of front-line defenders to ensure the longevity of autism (self) advocacy. Today, I cannot tell you the BEST autism resource link. I offer no cures for autism. I will only tell you what works best for my family and me: self-care.
Do you feel safe? How can we expect great strides in advocacy or development without this basic human survival need in place?
Do you feel wanted, welcomed, or loved by somebody? How can we expect good outcomes without love guiding our decisions?
Do you feel successful? How can we expect to move forward if we feel trapped or overwhelmed?
We cannot be effective autism (self) advocates without sharpening our SaWS: SAfe, Wanted, Successful. These three feelings will unconsciously direct our advocacy efforts.
Here are some culturally-biased examples:
I doubt any American would have written about lion poaching on September 12, 2001. Americans needed to feel safe before advocating for anything else.
I doubt many writers would have written about school-based inclusion during World War II. We needed to feel welcomed and valued before advocating for anything else.
I doubt any American would write about college tuition or lending reform challenges before their teenage child with autism learns to read. We need to recognize and appreciate successes in any form in order to build future successes.
Let’s be better autism advocates by sharpening our SaWS.
Let’s agree to be kind to each other. We can create a positive social change by leading with solid examples. Please consider these ideas for use whenever you feel ready. Some examples have stages of accomplishment to match a busier schedule.
CALL TO ACTION:
This weekend, check and/or replace the batteries in your home smoker detector. Charge or re-charge a household fire extinguisher. Inventory your baking soda or flour for accidental grease fires. Draw a map of our home with realistic exits and meeting places for an emergency. Identify any potential barriers that sensory-processing challenges may present to an alarm, new sights, new smells, etc. Consider contacting your local fire fighting teams and introducing your family and addressing their special needs. Practice a family fire drill with escape times under ten minutes, then five minutes, then as fast as you can safely escape and meet together.
These collective steps help build a safe environment. These activities help us show our love and value of other people in our family and community. These suggestions, at whatever piece you can complete, build real successes about our future hopes and plans. These ideas help us
Be Effective Advocates with Social Temperance: Be a BEAST!
ARE YOU FOLLOWING US?
This week, members of our non-profit organization met with the collective body of Police Chiefs in York County, PA. With our friend Trish IIeraci from Providing Relief for Autistic Youth, we offered our local policing authorities additional training about autism (and facial feature recognition). We want our community to appreciate, not fear, its autism residents. Can you name any other comic book team who met and helped advise county police chiefs about autism?
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.:”
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.
Last month, the National Basketball Association’s (NBA) held its annual draft selection. This event had nothing to do about autism advocacy.
The Philadelphia 76ers made the third overall lottery selection. This event had nothing to do about autism awareness.
When 76ers General Manager Sam Hinkie chose Duke Freshman Jahlil Okafor, fans booed. This event has a LOT to do about autism acceptance.
To the best of my knowledge, Jahlil Okafor is NOT autistic, nor has any publicized ties to autism. He doesn’t need these connections to understand his uphill battle for acceptance in Philadelphia. Everything he does for the 76ers will be magnified unfairly under a high-powered microscope. Fans do not presume competence in Jahlil Okafor while most of society presumes no faith in autistic individuals.
Despite leading a collegiate championship team at Duke University under Hall-of-Fame Coach Mike Krzyzewski, fans won’t accept ANOTHER tall (6’10”) player to their roster. Forgive me, but aren’t tall people usually welcomed to play basketball? Didn’t the 76ers win the 1983 NBA Championship with their twin towers of Julius Erving (6’7”) and Moses Malone (6’10”)? Wasn’t Okafor a powerful offensive weapon, capable of scoring 20+ points and/or rebounds in a game; aren’t these skills that translate well into a professional sport like basketball?
Instead of asking questions about how the Philadelphia 76ers will use Okafor’s talents, fans automatically feel disparaged by the team management. For years, owners encouraged outright failure in order to secure top lottery picks to unearth new talent. Now, they have some of this coveted ability with duplication and opportunity. Yet, nobody trusts ‘em, and that distrust becomes disproportionately shelled at a ninteen year-old rookie.
Okafor will earn and likely spend millions of dollars by the end of the year, paid to him by a team that distrusts him before donning a uniform. Among all of my personal friends with autism, we won’t likely crest above the average poverty level with all of of incomes combined. A disliked Okafor will have a palatial residence, while many individuals with autism peacefully and quietly exist on the fortunes of their families and friends for as long as humanly possible; only one-in-ten autistic adults find meaningful work. Fans cannot presume competence in Jahlil Okafor or the Philadelphia 76ers, so neither starts with success in mind. Similarly, our struggles for acceptance hinge on society presuming more competence. In the (near) future, Okafor could request a trade to a team who wants his talents. He could sign as a free-agent and earn MORE money or a chance to contend for a title. For autistic individuals, where do we go when society really doesn’t want us? How receptive to being integrated should we be, when we fear electrocution-as-therapy, earn less than minimum wage dollars for unimportant work, and face disproportionate unemployment statistics? Why does society tolerate negative media campaigns about how autism destroys jobs, marriages, and families? Why do scientists seek a genetic “cure” for autism without telling us what will remain after their so-called “cure?” Why do people desperately reach for bleach as a drinkable cure for autism unless they gravely fear the myths about autism?
The problem facing Jahlil Okafor is the same problem facing autism acceptance: lack of presumed competence. Nobody has faith in the team managers’ abilities to use talent. Nobody has faith in Okafor’s own perseverance or maturity into a powerful basketball presence. Nobody has faith in at least three tall men being able to win basketball games.
In autism advocacy, too many professionals presume no competence in autistic individuals: we cannot use the telephone to call home from school during a difficult day; we cannot carry a volunteer position without constant supervision from support staff who seemingly know less about autism than we do; etc. Like Jahlil Okafor, many people with autism have exceptional talents and are presumed incompetent or a poor fit for their business. This mismatch has nothing to do with individual abilities, but is an artificial organizational barrier created by misinformation and misunderstanding.
Like many with autism, Jahlil Okafor must fight for acceptance. He must prove doubters wrong, and thrive in a place that doesn’t seem to really want him. There is almost nothing short of an NBA Championship to quell doubt. For individuals with autism, there exists no easily-substituted Holy Grail to grasp. We walk around with invisible disabilities, but when we do something close to good or “normal,” we get pitiful praise. An alarming percentage of our fans treat me like a show-dog at comic book signings. Some feel happy that the poor autistic man wrote a big book, yes he did. Who’s a good boy? You are, Dave, you are a good boy. Some fans introduce themselves as “high-functioning,” in an odd way to build familiarity. Instead, attempts to align with “normal” by using “high-functioning” automatically throws “low-functioning” individuals under a bus. Am I supposed to like you MORE because you appear more “normal?” Will you wear a t-shirt boasting your IQ to avoid further comparisons to “low-functioning” individuals with autism? How do our peers in other minority communities respond- do people talk about their cancer diagnosis by disparaging another form of cancer? Obviously, we can celebrate fluidity in gender and marriage, but cannot accept racial self-identification any better than we can accept identity-first language without harsh criticism. In the absence of real-world awareness, acceptance, and compassion, I invented a fictional world within our comic books to show at least one positive alternative.
Jahlil Okafor won’t find acceptance in Philadelphia for a long time, until his business world dismisses what they think he CAN’T do and focus more on what he does well. Individuals with autism won’t find social acceptance until we find more patience and tolerance to develop our skills in contributable ways. Okafor will win ANOTHER championshp, this time in the NBA, before my friends or I find traditionally-meaningful work, where our abilities and talents are celebrated naturally within a well-suited organization without forced-fabricated “acceptance.” Go ahead and tell me I’m wrong, but unless you’re offering me a suitable “normal” job, then I reaffirm my claims and will rabidly root for Jahlil Okafor and the Philadelphia 76ers in the meanwhile.
In society, we can cure some diseases and offer substantial treatments for other ailments. When we discuss autism advocacy, our conversation magically shifts. A problem arises that few notice; autism is a neurological (brain) condition. Medicines have not effectively re-wired an autistic brain. Therapies treat other symptomologies without resolving autism itself. Too often, we treat autism as a socially-driven variable and ignore its biological roots.
In college, a friend was born blind. No pills would restore her sight. Therapy failed, too. Assisted technologies helped, though never really replaced fully-functioning vision. However, medical treatments and therapies helped in other ways. Since she found difficulties making friends or other social commitments, she battled constant depression. Prescription medications and therapists helped her understand her feelings, and subsequently overcome some fears. Her professional team addressed presenting symptoms, but not her blindness. Due diligence suggests how her team consulted my friend’s medical history to rule-out possibilities of curing her blindness and optic nerve damage. In a visually-driven marketplace, I can sympathize with wanting a cure for blindness.
Finding a “cure” for autism can be seen as morally and scientifically derelict. We wouldn’t give a person a pill to cure their life-long deafness, or suggest they drink bleach. Likewise, we certainly not condone electro-convulsive shock treatments against prisoners of war – even prisoners with valuable military information. Society would riot if we advocate these practices because they are inhumane.
…for anything but autism. Drinking bleach is now advertised as a “cure” for autism, among many other ailments. Everything Mr. Yuck taught me suggest bleach is deadly if consumed, right? The Judge Rotenberg Center promotes the use of Applied Behavior Analysis (ABA) – which is fine – AND skin shock aversive treatments. Oddly, peer-reviewed literature suggests a fault of ABA lies in its inability to motivate students over time. In other words, kids get bored with some rewards, and need new prompts to comply with rote questions and answers. Society wouldn’t ethically apply shock collars to a young puppy, but go ahead and slap an electrical shock device to a student with autism because…well…what I am I supposed to think? I guess my take-away is that practitioners and proponents of the Judge Rotenberg Center (JRC) must value autistic students with less regard and more contempt than dogs. No, I’m sorry that I can’t accept any amount of voltage running through another human being as a way to “cure” them or help acclimate them to social expectations.
One of the largest non-profit autism advocacy businesses worldwide recently held ANOTHER conference at the Judge Rotenberg Center. At no time did they use their dollars or influence to stop human tragedies at the JRC. To me, this is not positive autism advocacy. Trying to “cure” autism is the exact opposite of acceptance. Some researchers believe Albert Einstein, Amadeus Mozart, and Thomas Jefferson displayed enough historical traits as to warrant an autism label. Where would our world be without different-thinking people, with or without autism.
Some people may absolutely hate this blog post. Instead of alternatives, a sweeping removal of autism from the planet is in order in too many people’s minds. I make this offer to people who want a cure:
I’ll listen to your claims of an autism cure from authoritative scientists.
You listen to music I like. When the thrashing European metal chords and guttural lyrics make you cringe, I’ll dub your intolerance of something I find quite normal – sometimes soothing – as YOUR faulty brain condition. To help you overcome your aversion to my music tastes, let’s agree to use bleach and electrocution until you do like it, while I remind you how damaged and wrong you are for liking any other music. Please know that I do this work in kindness and love – I just want YOU to be more like ME, and that includes having a life filled with music…regardless of what happens to your brain or personality in the process. I offer no guarantees about what doing what I say will actually help you appreciate diversity in music, or what may happen to the portion of your brain that translates music and auditory messages.
Is it a deal?
…or, we could treat autism symptoms, but distinguish between other factors. For example, a lot of people contract poison ivy rashes, and statistically-speaking, at least one of those people is also autistic. It seems unfair to take the person to the doctor and exclaim- “He’s autistic. Cure him of his autism and the rash won’t be a problem.” I remember a time when accommodations ruled. Instead of blaming autism for a child’s inability to wear a cotton t-shirt, perhaps consider buying them a NON-cotton t-shirt. Stop pretending that capitalism meet your demands for diversity but let markets dictate how valuable autism advocacy is. If people stopped buying cotton shirts, someone will take notice and the marketplace will fill the gap. Be poised to know who and what sparks these changes. For me, I have a threatening kidney disease- should I blame autism for it, too? If my autism were somehow magically “cured,” would my kidney disease be easier to manage? Also, my kidney disease is more likely to shorten my life experiences than autism. If you want to talk to me about finding a cure, please talk to my nephrologist before my autism therapist, okay?
We recently entered a contest sponsored by Wells Fargo. With great thanks to a team of dedicated writing volunteers, we entered this submission for professional business mentorship and a $25,000 award. How will we use these resources?
Image a fantastic story – a radioactive spider bites a likeable student. This student discovers new superhuman powers, like a spider. He fights criminals after dating and studying. Marvel Comics’ “Spider-man” already matches this basic description. Now, what if the same radioactive spider bite also gives the hero cancer? Why couldn’t writers use clinical and compassionate experiences to describe a young person’s journey with cancer treatment? How valuable could this resource be for a young generation – with or without cancer – to understand cancer?
Our small business believes kids need heroes like themselves. Our founder (and comic book script writer) saw a gap in the marketplace. He took his experiences as a doctoral student researching autism and empathy connections, his work as a clinical therapist, and his own personal experiences as an adult diagnosed with autism to create a comic book. Face Value Comics is the world’s first comic book to feature a hero with autism!
Our comic books use a lot of scientific theories vetted by peer-reviewed literature. Using the Facial Action Coding System (FACS), we freeze multicultural and non-verbal emotional expressions on a static page. Readers build predictive empathy, and begin to see how or why a character may feel some emotions. This strategy helps erase a damaging myth about persons with autism: we DO have empathy, but may need more clarifications on how to respond. In the comic book, we have a lot of aliens and robots, but we also offer family-friendly role models. Each character has a fictional, yet robust, psychological profile, including descriptions of autism, anxiety, depression, etc. When confronted by a challenge, characters respond predictably because we compassionately use their clinical diagnoses for added legitimacy. Kids need heroes like themselves. These successes, as well as great international press coverage of our comic books, helps meet a part of our mission statement: helping persons with autism feel safe, feel valued and wanted, and feel and successful.
Autism advocacy requires awareness and acceptance. Our comic books earned several international awards and nominations within the past year. We’ve been on the nation’s largest television news network, with over 10 million viewers. Without paid search-engine optimization, we still rank highly in social media because we held over fifty interviews last year. This fall, we present to the United States Congressional Autism Caucus about replicating our educational reform initiatives with the Dover Area School District. People are becoming aware of autism…without fear or prejudice.
Acceptance is a larger hurdle for advocacy. However, our comic book sit on the same shelves as Batman and Spider-man. Last year, we became a best-selling, independently-published comic book through Diamond Comic Distributors. Making our comics available to more people remains our largest business challenge, and this is because of purchase power. Our small business cannot easily afford to buy in bulk, thereby reducing paper and printing costs.
Wells Fargo’s award would reduce print costs. Additionally, we welcome professional mentorship about business practices; our team consists on less than ten individuals. Regardless of the financial award, we ask Wells Fargo to consider helping us with a new marketing strategy: imagine how having a three-dimensional printer could help us. By raising the same facial expressions our artists typically create, and adding Braille, we could open comic books to the low-or-no vision community and for persons with autism with an added sensory experience.
Will you help us do more with what we have, and add your investments of time and talent and even a portion of the announced $25,000 award? Kids need heroes like themselves. Thank you for your consideration!
Recently, I discovered a new feature available from our digital publishers: Pay What You Want. This allows someone to download a copy for FREE, with an option to donate. Donations of any size will be used for future print and distribution costs.
If you like our Family-Friendly Code of Ethics, please help promote something positive about autism, for kids’ sake. Buy a copy and write a review. Share this message with someone who might like it or find it helpful along their journey with autism. Kids need heroes like themselves.
Autism advocacy requires awareness and acceptance. We’ve already reached millions of international fans with our comics, thanks to media attention. Our comic book aired on national television news stations, and a local journalist won an Emmy for his work. We been nominated and won several (international) awards. We’ve helped influence progressive thinking about special education by using facial feature recognition, with a surplus incentive without taxpayer contributions. On Monday (June 29th), I travel with our team to speak with the co-founder and Co-Chair of the Congressional Autism Caucus by invitation to discuss health care options Members of the Autism Community.
Autism at Face Value and I have already made history with our copyrighted comic book. Now, I want to pay it forward. Please follow this highlighted link, and register for your free account. Then, Pay What You Want to our non-profit autism advocacy business- Autism at Face Value. Donations of any size will be used for future print and distribution costs.
Here’s a free coloring page featuring the cast of characters from ZEPHYR-KITTY!
FINAL NOTE: Due to social media marketing algorithms, this message will not likely reach 50% of our audience, unless you share this post and its positive message.
Recently, two friends returned from a beautiful island vacation. They gave me a special and certainly unique gift. They hoped to cheer me up after battling a feverish kidney infection. Please let me tell you how three smooth stones completely changed me life…
My friends knew two things about me that helped them find a perfect gift. First, I like rocks and waterfalls. They thought that ocean-washed stones seemed like a close substitute. Secondly, I like knowing planned routines and schedules. Even if I miss an opportunity, knowing the next sequence of events helps me recover and re-plan. My friends explained to me how special these stones are: they keep away tigers!
Although doubting the dramatic claims about tigers, I happily accepted these pretty stones. I researched information about these stones, the island, and tigers…but found no data to support fantastic claims. Interestingly, no islander has ever been attacked by a tiger, though. Absent-mindedly, I just slipped these stones into my pocket where they remained until laundry-day.
My day progressed as expected, until I went to collect the mail. Is the short walk to the mailbox a window by which a tiger may pounce? Surely, taking these magical stones with me couldn’t hurt, right?
Thankfully, no tigers attacked me while getting the mail. No tigers appeared at the grocery store, either. I would make sure no tigers would be around my wife and I when we went to dinner with our vacation-returned friends.
We enjoyed lovely meals and talk. At one point, our friends shared news about their youngest son. He was recently diagnosed with autism. Surprisingly, both blamed a recent vaccination for the autism diagnosis! We did not discuss educational or therapeutic supports because the conversation hovered over vaccinations’ alleged links to autism. Before his vaccinations, the boy’s doctors and parents believed him to be developing typically. Nothing we could say could detract from their notion that vaccines caused autism.
Stuck on an uncomfortable topic, our friends suggested we talk about vacations and how well I liked their gift! I placed the three smooth stones on the table. “You don’t see any tigers, do you,” I asked with a knowing smile.
“You don’t really believe these stones have special powers, do you,” they questioned. I shared undeniable data with them- no tigers attacked me while I carried the stones. My friend is an accomplished attorney, and decided to use logic against my beliefs.
On a napkin, he penned this chart and asked me to complete it:
SUPPORTS MY CLAIM?
CHALLENGES MY CLAIM?
Are there any peer-reviewed journal articles about stones and tiger-prevention?
One article made suggestive links, but was retracted due to procedural errors, lack of replication by other scientists, and ethical motivation behind the written article.
No articles found refuting the link between these stones and tigers, but it’s a small sample size. More research is needed to find the link, instead of spent on tiger training and similar “coping” skills.
Were the island sellers motivated to make these claims about stones and tiger-prevention?
Islanders affirm their claims, and no stone-islanders were ever attacked by tigers.
Stone-islanders income from selling souvenirs accounts for 75% of their collected income.
Did I experience tiger attacks before I had the stones?
No, but tiger attacks account for 85 human deaths each year; I won’t be one of them!
Humans account for 1% tiger-related deaths, but little data exists about tiger attacks from impoverished tiger-filled places.
Do I feel my life been better since having the stones?
Yes, I have less anxiety about tiger attacks, and have a resource that shows how my own faults won’t cause a tiger attack.
If I am wrong, then I will always live in fear about what more I could do to prevent tiger attacks. I have too many other factors to consider about tiger attacks, so it’s just easier to believe something without needing more work beyond personal experiences.
How often do I think about tiger-related attacks?
I don’t have to spend my time on this worrisome topic, since I have THE answer to stopping the problem.
If my claim is overturned, I am left with more anxieties about tigers. Next, what else might ambush me? Will it be my fault, too?
My friends said that I seemed “obsessed” about their simple gift. They said greedy islanders tell grand stories just to make a sale of cheap souvenirs. They pointed to a lack of scientific research on the tiger-prevention topic; I countered by saying it’s a small sample size, and that I never encountered a tiger nor peer-reviewed literature against my claims. I also proposed my belief that somehow, in some way, our governments must be engaged in suppression campaigns about the truth. Of course- it’s cheaper to buy tiger-prevention stones than pay for medical bills related to maulings, so big business and medicine must plays parts, too.
My wife diplomatically interrupted. While she agreed that no scientific claims support my beliefs, she cannot deny my experiences. She added that if my friends ruined the “magic” of the smooth stones, I would be left with less hope. Was that the insidious purpose behind their gift?
My world needs predictability. These stones do more than prevent tiger attacks- they give me peace of mind. If a tiger inexplicably attacked me, at least it wouldn’t be my fault, because I carry these three smooth stones. Consequently, I don’t accept any personal responsibility for preventing tiger attacks. In some way, I have THE answer to preventing tiger attacks. Imagine if we mass-produced these stones- how many tiger-related deaths could we prevent each year?!? Nobody believes my ideas unless I provide research showing a statistically-significant link that I already know exists. Don’t ask me how or why these three smooth stones work- they just do!
…and you have no right to challenge my claims!
You have no right to challenge my personal experiences or those of the tiger-free islanders. What does it matter if I lack empirical evidence- I’ve already suggested government + big business + medical community conspiracies. My wife lends her observed experiences that match mine. Can you name any other links between the stones and a lack of tiger attacks? If you don’t have professionally-researched articles to counterbalance my arguments, please just accept my own claims. Right now, you can offer me no greater solace than I have from believing three smooth stones prevent tiger attacks. How cruel must you be, to demand more scientific facts or challenge personal experiences? Isn’t living with the threat of tiger-attacks enough stress for me to carry?
Back at the dinner table, we found ourselves at another uncomfortable impasse. I asked my attorney-friend if they planned to sue the hospital or vaccine manufacturer for causing their son’s autism. America remains an actively litigious society – we aren’t too far removed from million-dollar lawsuits over spilled hot coffee. Anti-vaccination stances might support a class-action lawsuit against the purveyors of autism-inducing vaccines. Frequently, televised commercials offer to take legal action against other medical procedures gone awry, so why not autism?
My friends suggested how I mistakenly applied spurious relationships between the three smooth stones and a lack of tiger attacks. Spurious relationships are mathematical constructs to determine causality. Too many other variables could factor into my stones’ alleged power to rebuke tigers. Why fix something that’s not broken?
Next, I asked my friends to consider the same table when assigning blame to vaccines for causing autism. Quickly, I sketched my own chart by following similar example:
SUPPORTS VACCINE LINK?
CHALLENGES VACCINE LINK?
Are there any peer-reviewed journal articles about vaccines linked to causing autism?
Were any claimants motivated to make any links about autism and vaccine links? What does the rest of the professional community think about any claims AND claimants?
Did your son experience any autism traits before having the vaccine?
Is your life better by having a child…with autism?
(Person-first language encourages me to use emphasize the CHILD/person above the diagnosis.)
How often do I think autism and vaccines, or personal responsibilities as a loving caregiver for a loved one …with autism?
They politely folded the napkin and placed it in a pocket. Next, we enjoyed a light dessert with our friends, and concluded the evening happily.
…without tigers and without blame.
If you must reply to this conversation, let’s agree to keep tiger-preventions or tiger-cures as the main topics. Autism diagnoses account for 1.4% of the population. Tiger attacks KILL 1% of its respected population. Autism doesn’t kill people, but tiger attacks do. Let’s focus more attention on finding a cure to tiger related attacks and deaths.
First, you’ll need to find yourself some big stones…
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.
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.
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.
This week, many fans worldwide celebrated a newly-diverse character in the Marvel Universe. Undoubtedly, Marvel Comics underestimated fans’ mixed reactions to Bobby Drake (Iceman) being gay. Having read the comic book (New Avengers #40), I admit it’s a good story. While I personally want to see more diversity in comic books, I realize this advocacy is a process we have to start with someone somewhere. This week, it’s Bobby Drake.
Some fans questioned my claims how Marvel Comics doesn’t prioritize diversity as highly as it does money. Sure, they’re a big business. They’re in this business to sell us great stories. Pffft- what about Marvel Comics has ever ever ever indicated they understand diversity, or are subject-matter experts about diversity? This isn’t their specialty- making money from selling us stories IS their business. We should expect Marvel Comics (and DC, and Image and Dark Horse, etc.) to write compelling stories. When they don’t show their work behind a new character, we should question their commitments to new characters. Is it a gimmick to have a gay comic book hero? No, it’s not a gimmick- it’s a first step towards compassionate understanding.
However, if Marvel Comics does nothing with Iceman’s character’s identity, he becomes less real. He becomes a poster-child for non-existent advocacy if writers abandon his character’s identity. I do not know who among Iceman’s creative team knows enough about gay experiences to lend legitimacy to his character. Dogs can’t write cat stories, through no fault of their own. Even in our comic book, I need help to capture a teenage girl’s experiences, since I’m a 40 year old male. We sincerely hope Marvel Comics continues to write compelling, engaging stories about our heroes. Iceman’s been around 50 years and appeared in six different movies, so it’s time he’s known for something more than his ability to make free snow cones.
Yesterday, two independent comic book creators (with former ties to Marvel Comics) sued Marvel Comics and Disney (among other named defendants). Why? Their claims are better articulated in this news coverage by Robot 6, here:
The last time Marvel Comics were sued by artists, we got new renditions of their characters. Specifically, we had exact opposite depictions of the characters Captain America and Thor. Why were these changes made? Does Marvel Comics want to embrace diversity, or do they just want to avoid (more) lawsuits? If we see a new Iron Man from Marvel Comics in the near future, we have reasonable cause to question WHY we have a new Iron Man. Answer: Money, while dodging lawsuits. Making a new Iron Man would be okay- he DOES have a lot of suits. However, if Iron Man is suddenly a member of any particular minority group, let’s not pretend that Marvel Comics suddenly grew a heart. If we agree they are big business, then any moves made are from a business standpoint. What business strategy would be gained by making Iron Man a member of any minority group? It’s insulting to think they could cover up their mistakes by simply hiding behind a minority-based character. We know and remember WHY the character was changed- they got sued. Adding to the diversity discussion is profitable secondary gain. More importantly, I want to ask Marvel Comics to continue what they do best- write stories. Sure, they have a target on their backs as billion-dollar business, and lawsuits could be predictably common. However, making a new character requires more than a new costume and demographic label. Show us heart. Show us bravery. Show us failures and successes with compassion for the attempt. Yes, we want demand intelligently-created superheroes, even if the heroes aren’t genius-caliber. We want to see internal struggles and victories with the associated personal experiences with which you, Marvel Comics, have given them. You didn’t HAVE to make so-and-so a member of this-or-that group, but since you did, please follow-through.
Throw darts. Spin a wheel. Pick labels out of hat. Whatever changes we see in a new Iron Man won’t be prompted by understanding diversity- it’ll be because of a lawsuit. We’ve seen this happen with Jack Kirby’s lawsuit, so why should we expect anything different? I want to like Iceman as a legitimate character. I can’t help but feel like he may be a strategically-placed pawn in a much larger chess board. Will Marvel Comics sacrifice Iceman’s character to grab more dollars? Let’s hope they keep him safe and strong, and continue along this journey of respecting diversity in comic books.
On social media, and by some good friends, I’ve been asked to simplify my angered comments about Marvel Comics’ newest diverse character, a gay Iceman.
Marvel Comics is in a large business to sell stories.
Name one thing that Iceman has done in fifty years. He’s also been a part of SIX movies. Go ahead- name one thing that distinguishes Iceman as a hero.
We wouldn’t accept a politician whose only platform was their sexual identity. Without a proven track record, we would see through this politician for what they really were- table scraps given to pacify voters and secure a demographic.
Marvel Comics lists Iceman as being an “Omega” level mutant. This label makes him one of the most powerful members of the X-Men team, if not one of the most powerful heroes on the planet! Of course, all of us can recall times where Iceman used his phenomenal powers to fix climate change/global warming, stop nuclear wars, and make a snow cone, right?
Iceman wasn’t first Marvel Comics character to showcase diversity. We’ve seen changes to other popular characters in the past few months. In fact, these changes were so radical that the new incarnations were exact opposites from their counterparts. Without needing to cite which demographics match these characters, focus more about the lawsuit brought against Marvel Comics by the original creator.
Do you remember a television show called KNIGHT RIDER, with David Hasselhoff? Do you remember his talking car, KITT? Let’s pretend that their production studios were sued by a writer. To avoid the lawsuit, they re-painted KITT the opposite color for which he was popularly known. Is that racist? No, but we’re talking about cars and not people. If we change the color or gender of a character for no reason other than to avoid a lawsuit, what kind of story telling do we have? Sure, the background for the new Captain America might be compelling. I cannot overcome my knowledge that a lawsuit prompted the change, not benevolence or good-intentions. If I am wrong, than Marvel Comics will keep their new Thor and Captain America characters for longer than one year. If they abandon these characters, then we affirm the changes was not prompted by good storytelling or benevolence, but to avoiding a lawsuit, under the guise of diversity.
When DC revisited their Batgirl title last year, they set a high benchmark. A lot of publicity aired about their new female-friendly writing team. We got to see their entire Batgirl creative team enjoy the new mission ahead through social media. This preparation lent legitimacy about their claims of wanting a new, socially-responsible character. Since DC (and Marvel) are in the business to sell us stories, they wrapped-up Batgirl with a nice bow. Batgirl wasn’t in the middle of a lawsuit by her original creator. Her change seemed legitimate. We saw their efforts, and bought-in.
Go ahead- name one thing that individually distinguishes Iceman as a hero in the last fifty years, aside from his bravery to admit sexual identity confusions. This is lazy storytelling. Their creators put more effort into obfuscation and politically-correct strawmen than making a believable hero. However, if I question their efforts and want more, I unwillingly place a target on my chest as being discriminatory. See- I told you Marvel Comics would want other people to defend their token gay character for them!
Iceman could be a role model to a lot of readers. Now he only really has a label. I am saddened by this reality. Tell a better story, Marvel Comics – please! You are in the business of selling us stories. Why did you only make Iceman relevant for his sexual identity? I find this gesture like one of pity- why can’t Iceman be a real superhero with awesome abilities and good deeds to make him worthy to roster among the X-Men (if you don’t kill off more characters to spite 20th Century Fox)? You slap a label on him, but this trick won’t be enough for fans to accept him as a title-worthy hero. We’re searching for diversity. You write stories. Write us a story about real diversity, one in which we can believe. You’ve got a good start, so please don’t let it fall away like you’ve done in the past, Marvel Comics.
I submit a new superpower for Bobby Drake: invulnerability to public criticism about how well his character is written and portrayed.
Autism Awareness – Meet the World's 1st Comic Book Hero with Autism!