Tag Archives: Autism Spectrum Condition

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.

New Year Autism Opportunities

Happy New Year! One of my personal/professional goals was to read more new theories about coping with autism. At Christmas, I got a special gift from my friend, Dr. Rob Melillo. He asked me to review his latest book!

I’m humbled and honored by his invitation. Dr. Melillo’s the world’s most-quoted author on neurodevelopmental disorders. Soon, I’ll share my thoughts about “The Disconnected Kids Nutrition Plan” on this blog.

drrob

Instead of bragging, I want to remind our fans how this is a shared journey. Whenever anyone tells you or a loved one – with or without autism – you “can’t” do something you want to do, you’ve an opportunity to positively change their perceptions. I have autism. Because I have some poor social experiences, I lost (too) much in my personal and professional life. We could commiserate for days about autism, but I offer a more productive experiment:

Be the change you want to see in the world,” said Mahatma Gandhi. How do we do this work, to change social opinions about autism? “A journey of a thousand miles begins with one step,” retorts Lao-Tzu. January is rife with planned promises for the future. What will you be doing to help yourself or loved ones feel safer, feel more welcomed and valued, and feel more successful? I’m listening more, reading more, and writing more good stuff.

Join me.

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.

Three Smooth Stones – An Autism Fable

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…

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Pebbly Beach and Ocean Vacation

 

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:

 

DATA COLLECTED 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?

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Three smooth stones prevent tiger attacks – Why isn’t this getting more news coverage?!?

 

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:

 

DATA COLLECTED 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.

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Find some stones! You’ll need ’em to present any beliefs you have about autism and/or tiger-related attacks.

First, you’ll need to find yourself some big stones…

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.