Category Archives: ASD

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

Dear Rosie…An Open Letter about Autism (Probably Part 1 of Many)

AN OPEN LETTER TO ROSIE O’DONNELL, PART ONE

Over the Thanksgiving break, I read about Rosie O’Donnell. Via Twitter, O’Donnell acknowledges how her young daughter has an autism diagnosis. We applaud her bravery to seek a definitive diagnosis to explain whatever challenges Dakota may have. Furthermore, we welcome O’Donnell as a staunch advocate for positive change.

Millions love Rosie O’Donnell as a comedic entertainer. We watched her spar with (now, President-Elect) Donald Trump through social media. Obviously both O’Donnell and Trump have each others’ attention and respond in kind.

Now hypervigilant about autism symptoms, O’Donnell took to Twitter on November 21st and asked a question related to autism. Her tweet is embedded here, but I chose not to activate the video link; the video itself is not today’s topic. Rosie O’Donnell’s influential advocacy role as a loving caregiver to someone with autism is our topic.

rosiebarron

Question: Name someone – anyone – who can elicit a passionate reply from our soon-to-be Commander-in-Chief? Is O’Donnell at the top of your list, after crossing-out (untrustworthy) media sources?

I appeal to O’Donnell’s love for her daughter on behalf of 3.5 million United States citizens living with autism. Use your advocacy skills, love, and Trump’s attention to start a non-confrontational discussion about autism. People will (and already have) listen to you. You’ve more ways to continue said campaign than most readers’ resources pooled together.

Everything lives forever on the internet, so I caution O’Donnell from referring to any child’s possible health concerns without parental or their own consent. This admonition includes referencing Barron Trump, too. I believe O’Donnell is: 1) NOT a certified medical professional trained to diagnose autism, 2) NOT Barron Trump’s physician, and 3) WANTING to start a positive autism discussion at the highest political level in our land. Therefore, I lament her willingness to make an armchair diagnosis about any person’s kid, especially without their consent or desire for such benevolent inquiries. Within the autism community, we fight against neurotypical stereotypes, and these include “symptoms” others may see for less than thirty seconds. Like fast food, social media gives us a flash of reality and expects us to digest it just as easily as a legitimate source of nourishment.

Instead, I offer to walk with O’Donnell along her autism journey. I invite her to chat with me, and I’m sure she will if motivated. I also call upon her to do some positive things about advocacy. Follow me.

Step One:

Acknowledge social problems experienced by persons living with autism. These include abysmal statistics in unemployment, underemployment, long-term housing, medical insurance coverages, and educational material. Until meaningful accommodations are met, persons with autism will be seen as social bottom-feeders beyond the playground. Will you please address this problem, Ms. O’Donnell?

Step Two:

May I call you “Rosie,” please? All of this “Ms. O’Donnell” language seems far too terse when we speak of compassionate service.

Step Three (This is a BIG One!):

Join me in lifting the autism-community boycott of Autism Speaks. Since the passing of co-founder Suzanne Wright, Autism Speaks seems poised to lead by mindful education. Else, they may feel compelled to return to fear-mongering and perpetuating myths about autism. New leaders deserve a chance – isn’t this what President Obama said? Let’s align ourselves with Autism Speaks as the largest U.S. Autism-centered non-profit organization. Obviously, our boycotts did not work, but we do have their attention. Are we willing to be as accepting of others (including new people who lead Autism Speaks) as we claim we want other people to be of us?

Step Four:

Buy a copy of Face Value Comics. Actually, get it for free, here: http://www.drivethrucomics.com/product/124765/Face-Value-Comics

Two years ago, I opted to remove financial constraints from people interested in our comic book. As the world’s first comic book to explicitly feature a hero with autism, we got a lot of attention. We won international awards and enjoy a world-wide audience. Our inclusion of facial feature recognition earned us a positive review in an accredited medical journal as an educational and therapeutic enterprise; we’re the only comic book to be reviewed in a medical journal, too. Pay what you want.

Step Five:

Please, call me Dave. When I hear “David,” I look for my mother, who is likely going to yell at me for something I (probably) did.

Step Six:

Join us in our grass-roots advocacy. We’re just everyday people, but we self-published a unique comic book. We’ve been on the NBC Nightly News, medical journals, and have spoken to the PA and US Congress about autism as subject-matter experts. We would welcome you to share this advocacy spotlight, because I fatigue easily due to my own health challenges (including autism).

In April 2017, in Philadelphia, we debut our latest comic book for fans. As we finish editing and storyboards, we welcome your input into how autism might be portrayed. We seek clear understandings, and to maintain our family-friendly content. You started a serious conversation- will you continue? Do you need or want our help? Have you ever been to a Comic Book Convention as a fan?

Step Seven:

Continue the conversation. I have other strategies we can discuss about positive autism advocacy and acceptance. I also have several Trump-focused Tweets suitable for sharing, that further push this agenda. Otherwise, fans and myself risk seeing you as a fair-weathered advocate for equality and human rights, choosing how and when to stand up or give up based on convenience. Autism is a life-long diagnosis and challenge; will your advocacy, compassion, and interest extend as far?

My requests may take some time to ponder. Contacting me may take time. Let’s decide to chat again in a week, okay? Rosie – please visit and follow us on Facebook, (https://www.facebook.com/FaceValueComics/?ref=bookmarks) or on Twitter (https://twitter.com/FaceValueComics), and send us a message.

Be well,

Dave Kot, an adult with autism and co-parent to a lovely young lady with autism

Re-introductions

“Who am I? Why Am I here?” – Admiral James Stockdale, 1992 Vice-Presidential Running Mate

This quote seems appropriate for me. For several months, I’ve been noticeably absent from social media. Friends and family have given me space and support. Still, I needed to address some things, and share some of those things with you now, in no particular order:

  • My father had a stroke and subsequent heart surgery, and he continues to recover.
  • Due to some health concerns, I’ve been battling lingering effects of at least one concussion sustained in a fall(s).
  • At a holiday celebration, I had to advocate about autism acceptance because,
    • A young man rejects his autism diagnosis because he believes himself “too smart” to have autism, and
    • (Too) many (family) members treated a young lady with autism like Lenny, from the book “Of Mice and Men,” when she wanted to play with new kittens; no kittens were harmed.
  • I’ve reviewed a LOT of internet chatter and direct inquiries about the comics’ utility, including inquiries about its academic merit and curriculum suggestions.
  • We’re in a state of growth, including adding new writers, artists, and equipment like a phenomenal printer.

What does all of this mean for you, as fans of the world’s first-featured comic book hero with autism? Stay tuned, because I will begin to break-down how these events have galvanized my resolve. I promise to be honest with you even if I don’t know what direction to take.

Follow me. Walking arm-in-arm for advocacy suggests a patient pace, right?

EFFECTIVE AUTISM (SELF) ADVOCACY, PART TWO

B.E.A.S.T. Training, Part 2

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:

YOU.

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.

Fire Chief Faust, from Face Value Comics
Fire Chief Faust, from Face Value Comics

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?

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.

An Autism “Cure”

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.

Mr. Yuck
                   Mr. Yuck

…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:

  1. I’ll listen to your claims of an autism cure from authoritative scientists.
  2. 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?