Tuesday, April 11, 2017

Nonverbal, Nonspeaking, Autistic Word Navigation

Mustafa Cevik. image of a large, biracial Hispanic presenting
male wearing a sky blue nd white striped
polo shirt sitting in a wheelchair drinking from a water
bottle. Posted with permission from the subject. ©Nuri Cevik
The day I met Lydia X.Z.  Brown, they told me about a gentleman named Michael Forbes Wilcox and the word nonspeaking. Per Mr. Wilcox, most autistic people were incorrectly defined as nonverbal when they were actually nonspeaking.

This is why so many early intervention programs entail depriving autistic children of AAC support while battering them with forcible speech interventions. I guess their logic is there is no apparent physical challenge to producing speech so whatever utterances can be produced should be forced out of the autistic child by any means necessary.

The result adds to the presumption of said autistic child's incompetence because the child may have limited verbal speech ability but much larger AAC supported speech ability.

Thanks to Lydia Brown, I mostly use the term nonspeaking when discussing my son, but his situation is a bit different than most of his autistic peers. My son was diagnosed with damage to an area of his brain related to speech. We were told therefore that he was clinically nonverbal and probably wouldn't be able to speak. At all.


 Mu has spoken on occasion in more than one language since that diagnosis and even during the time he was being evaluated. We aren't certain technically how he is able to do it. When it happens I try to act casual. But because when he does speak it is usually related to responding affectionately to either his father his sister or me, I am inevitably overcome with emotion. Just after such a moment, I  quietly remove myself from the room so he doesn't misunderstand and burst into tears of joy.

His voice, as he has entered puberty, is deeper, richer, and more beautiful now.

We were outside yesterday and kids ran by screeching as they played. It disturbed him. It is only on these occasions that I realize how big and different he is from others his age who do use verbal speech freely.

It seems to me other fourteen-year-olds talk too much.

His rare affectionate utterances have greater worth to me than the shrieking profanities and loudly whispered ableist slurs of his teenage peers dressed in what they consider their Easter best.

Yesterday I realized again quite clearly that Mustafa, nonspeaking, is a better man than all the howling herd of fourteen-year-olds stomping about trying to figure out who they are by hurling insults at my silent, disabled son.

I love him. As he is. If he never utters a word again. We will continue to stand together, with him leaning on me when he needs physical support, and face the angry ableist racist mob. He doesn't need to speak. Unlike fourteen-year-olds, I know the value of well-placed words in defense of my son's right to navigate the same spaces as they do.

Autism Month should exist to educate those people. It does not. It makes them pity or resent my son and neither he nor I abide that attitude either. They should be taught that words are capital and each moment they spew the wrong ones in misunderstanding, fear, and hatred they bankrupt their own souls. This doesn't diminish my son, no matter how different he may appear to them. Different is not less. It is simply different. Disability and race are the only areas in which difference is not considered rare and precious.

Meanwhile, back at our house, a single word uttered by my son at the right time has the power to bring his jaded old Afro-Latina mother to tears.



Educate yourselves at Lydia X.Z. Brown's blog:

More on The Language of Autism by Michael Forbes Wilcox:

Sunday, April 2, 2017

Casey Neistat, Nike, Inspiration Porn, Assistive Technology and Autism

Mu in a green hoodie, in mid-stim. ©K. Cevik posted
with permission of the subject
I'm as flawed a human as anyone else, and on February 23rd of this year, I faceplanted right into a campaign to market Nike HyperAdapt shoes. Anyone half my age might have seen it, but me, highly emotional eternal researcher for any assistive technology that might improve the quality of Mu's life, was completely clueless and therefore made a fool of myself tweeting my issues and concerns with a giveaway campaign for a single pair of Nike's HyperAdapt shoes on social media that was meant to give a boost to, Nike HyperAdapt shoes, Casey Neistat, and the YouTube channel of a Christian, c5-c6 quadriplegic YouTube creator named Dustin.

Silly me, I thought this was a random act of kindness.

So let me give you all some backstory.

Remember when  Eddie Murphy did a satirical sketch on SNL called "White Like Me" , where he posed as an undercover white man for a day to see how the other half lived? One of the premises of the sketch was that "white people gave one another things for free." Casey Neistat, a YouTube personality, and influencer marketing millionaire is the consummate first person singular branding of the white man that makes Eddie Murphy's mockumentary true.

Casey Neistat is the persona of  the white dude who people give things to for free.

Mr. Neistat got a free upgrade to a $21,000 first class seat on Emirates airlines and his vlog episode about it went viral. He's been 'gifted' high-tech toys like drones to test (sometimes before they are released for public consumption) and as a result, he is able to stage the occasional giveaway of said gadgets. He has a legion of loyal subscribers to his YouTube channel following his every adventure.

I subscribed, wondering what all the hype was about. I can tell you, the man knows how to tell a story, and how to turn any product placement into an anti-ad story that just happened to fall into the greater story of his day to day life.

 Mr. Neistat also flexes his Internet influencer muscles by lending his massive following to some crowdfunding efforts. What he's learned is that he has tremendous power to reach people and get them to act for good and millions of people trust the Casey they see on his vlogs. These efforts when added to self-deprecatingly candid vlogs also humanize him enough to keep his audience from hating the things he gets 'for free', like the $18,000 a night hotel room upgrade he tweeted and vlogged about:

Because his brand is being that white dude who went from a high school dropout to being a millionaire by just working hard at being a dude and doing what he's always wanted to do he manages to exude the chill dude tooling around NYC on his boosted board who no one has a reason to hate.

 Mr. Neistat's latest philanthropical giveaway/ad for Nike/ad for YouTube caught me off guard. Here's his giveaway story:

 I foolishly tweeted away advice and concerns and basically only realized too late the intent here was audience share and inspiration porn, and neither Nike nor Neistat would care a whit about some parent of some nonwhite nonverbal non-target audience autistic teen nor her views on why objectifying disabled people or asking them or their family members to clamour for a single pair of free shoes was degrading to their dignity.  Meanwhile, a week later, the story of the wonderful HyperAdapt shoes just happily ending up in a good Christian visibly disabled fellow YouTuber's hands was serendipitous Hollywood film ending stuff:

The Neistat giveaway and triple marketing win for him generated headlines that read, "Casey Neistat Is Giving Away a Pair of Nike HyperAdapt Self-Lacing Sneakers." By generating excitement then giving the shoes away to a fellow YouTuber who fit the profile of looking disabled enough to "deserve" the shoes and be inspirational enough to post a great gratitude story video, the entire event gave unsolicited advertising points to Nike, improved Casey Neistat's brand, promoted a fellow YouTuber's brand, and offered up just the right dose of inspiration porn for all. The only foolish person in this little social media adventure was me.

 What was I thinking? I tried tweeting to Neistat.  He completely ignored me of course. Nike, Neistat, and YouTube had their moment of disability inspiration porn, and a deserving disabled white male got a great pair of high-tech shoes out of it that as he [Dustin] put it, will last a very long time because he's a wheelchair user.

They never saw the incongruity of $720 shoes that 90 percent of the people who need them could not afford to buy, maintain or use. Autistic teens like my son, who can't speak to lobby for free shoes would not be viewed by Neistat as disabled enough because he wanted someone physically disabled. Everyone needed to say, "ah, now that person is truly disabled. He deserved those $720 shoes." The visibly disabled person could not, however, have a developmental disability. That would be uncomfortable for this massive audience. So while I was tweeting away about dignity for autistic teens, poverty that made this assistive technology inaccessible to hundreds of autistic adults and young people, the terrible risks of owning $720 sneakers in the neighborhoods most disabled people have to live in, and the idea that even if by some miracle someone could afford these shoes they would most likely be stolen from them or sold to cover rent, food, or critical medications, Neistat and Nike continued blissfully ignoring me.

I should have seen the ignoring happening. But when you're tired from being the primary caregiving parent for your disabled son and you filter technology through the lens of how much actual help it could be for your offspring, you miss clues that you are the interloper in a smoothly run giveaway promotion.

 What I do next is a Hobson's choice, really. If I asked Neistat to go learn about Autism, he'd go off to Autism Speaks or TACA and come back with more inspiration porn, pushing medical model rhetoric. So I am here with lessons learned for all of you, knowing that Neistat and Nike will never read this or learn anything from it, but glad to know I may in writing this takeaway something beyond my own time-wasting tweets on disparities in affordable assistive technology.

1. I believe it is about time we begin really writing these companies and letting them know that most autistic children and adults can't benefit from their products if they can't afford to buy them. Footwear meant to be assistive tech must be affordable.

2. Somehow we must set the limits on objectifying our disabled loved ones. Much of this centers on the idea that many adults who become disabled later in life internalize ableism and have no issue with being objectified and used in this fashion. I am absolutely pro-disabled Youtube creators with their own channels. As long as they realize all wheelchair users are not a monolithic group, and individual experiences, while valuable, cannot be generalized to everyone. We need to be asking ourselves how to counter internalized ableism in people who aren't born disabled.

3. What is and isn't inspiration pornography? Where is the line drawn? Is all inspiration porn bad? I don't have the answers to those questions but need them.

4. We need better ways to let the public know what invisible disability is, and ways of demonstrating that developmental disability is as valid a label as physical disability without humiliating our loved ones. I would not have publicly debased my son by detailing private health information on a global public forum in exchange for free shoes, regardless of their cost.

5. I would like to see assistive technology work grow to a collaborative environment not based on pity politics, but based on the idea that easier ways of doing any task benefit all of a society, therefore, including disabled experts without using them for inspiration porn would be the best way  to engineer solutions that help them navigate the world.

Here is the big lesson for me, Kerima Cevik, autism parent. I need to realize when a headline like "Casey Neistat Is Giving Away a Pair of Nike HyperAdapt Self-Lacing Sneakers" is just a marketing ploy and not try to explain what real world problems autistic people of color and their families have to people who don't really care. The time I wasted trying to get through to companies and personalities who don't care what it means to navigate the world as nonverbal autistic person of color could have been better spent with my son.


Thursday, February 16, 2017

Autism Research Battle Fatigue

Mu with iPad AAC ©Kerima Çevik
It begins every February. Just after Valentine's Day, the build up of hype to Autism Month kicks off with the media blasting "breakthroughs" "new research" "new hope" for autism. We grit our teeth and manage to get through it, but the latest "breakthrough" got on my husband's last nerve. He was really angry and so was I because the pattern is an infinite loop that paves the highway to nowhere that helps our son.

It goes like this: Some minor thing is hyped in the press as if it is a medical miracle, followed by a small bit of news that changes nothing and does nothing to help our 14-year-old nonspeaking autistic son with his AAC needs, his education, his healthcare challenges or his community supports. Here's how the BIG AUTISM NEWS was headlined:

Study: Detecting Autism May Be Possible Earlier in Child's Life 

But early detection doesn't help diagnosed autistics over the age of four at all. The average lifespan of an autistic person is 16 years less than the lifespan of anyone else according to a Swedish study. Inevitably, research always focuses on birth and early intervention, then ignores the entire life that already diagnosed autistics have to live after those first four years.

Here is what the headline should have read:

Brain Scans Detect Signs of Autism in So called 'High-Risk Babies'(i.e., siblings of autistic children) Before 1st Birthday

Here is what this study, which must be replicated in order to base any sort of planning or policy on it, actually says in brief, plain language:
If a family has one autistic child and they have an infant, and that infant has a bigger brain, then that infant has an 80% chance of being autistic. Bigger brains can be checked for by MRI scans on sleeping infants.

That is it.

Whenever I hear about new research, I go to Scientific American or the peer-reviewed journal publishing the original research paper. This allows me to see what the research was actually about rather than have to wade my way through hype and skewing of research results for attention or ratings. Here's the article on the actual research paper:


Wow. I love millions of dollars in research that states the genetically obvious.

But hey, early detection means early intervention and the chance for 'making' infant siblings of autistics indistinguishable from their peers, right? Because hiding in plain sight is 'good' and means fewer resources and higher demands on children who will still be autistic, but just look and behave as if they aren't. It seems that autism research isn't about supporting autistic people and their families, it is about making society comfortable by hiding those who are autistic among those who are not. Are we now entering the "Autism: Don't ask, don't tell" era?

Tell me, how does this help my son with the accommodations he needs? How does this research aid in his primary challenge, which is being nonverbal? How does this improve his sleep cycle disorder, immune system weakness, gastrointestinal issues? This is not an autism breakthrough. This is an autism research paper in which genetic predisposition for autism was likely and success was almost inevitable.

My husband and I are tired of being perpetually annoyed at the sole emphasis on this type of research and the media's hype of it because funding that should go to improving the lives of our son and his peers is instead being disproportionally poured into detection and DNA testing. Yeah. We actually get our son is autistic. So does he. Aren't all of you tired of this, too?

We don't want research into new and improved chemical restraint in the guise of powerful hypertrophic drugs. We don't want to fund the ambition to create an autism test that works like the Down syndrome test so parents can abort their autistic babies or "CRISPR" the "autism genomes" away. Nope. I don't care how soon they could have diagnosed my son as autistic but did not. What I care about is how to help him become as autonomous as possible and how to ensure he has a safer, more accessible world to live in. I care about him not dying before his time.

We watch million of dollars go into everything but what autistic people need. No needs assessment has been done on what research autistic people and their families need that might help them right now, and each time one of these research puff pieces comes out our exasperation escalates to the point where we are now in full autism research fatigue, and just don't want to hear it. Research claiming to be "for autism" should actually benefit our autistic loved ones, not focus solely on early intervention and early diagnosis. It is past time for autism research to aim for client-centered outcomes with the active inclusion of autistic people and their families beyond use as data sources and genetic material.

We will have two more months of announcements on research "breakthroughs" "new research" and "new hope" "for" autism, not autistic people,

Caveat Emptor, buyer beware autism families. When it comes to autism research rolled out from February to April's fundraising month for autism, ask yourselves how it benefits your autistic loved one. The truth is, we are the ones asked to participate in various events to raise funding for autism research. Think about where that money will go and make your voices heard for autism research that benefits and improves the quality of life for your autistic loved ones and increases their lifespan. Then speak out and do what is necessary to drive funding to that research.

On New Autism Research
Scientific American 
Autism Starts Months before Symptoms Appear, Study Shows
Flagging children early offers the possibility of more effective treatmenthttps://www.scientificamerican.com/article/autism-starts-months-before-symptoms-appear-study-shows/
NBC News
Study: Detecting Autism May Be Possible Earlier in Child's Life http://www.nbcnews.com/nightly-news/video/study-detecting-autism-may-be-possible-earlier-in-child-s-life-878228035632
On the Shortened Lifespan of Autistic People 
Why do many autistic people die before the age of 40? http://www.independent.co.uk/life-style/health-and-families/health-news/autism-why-do-many-autistic-people-die-before-the-age-of-40-a6937911.html
On CRISPR and Targeted Genome Editing
New England BioLabs
CRISPR/Cas9 and Targeted Genome Editing: A New Era in Molecular Biology

Saturday, October 8, 2016

Boxing Wanderlust

Nadia Bloom is carried out of swamp by a Winter Springs Police Officer
©Winter Springs Police
The Autism Society is part of an Autism Safety Coalition that Includes The Arc, Autism Speaks, TACA, The Color of Autism Foundation and other nonprofits that are currently lobbying their members to support a bill through both houses of Congress called S. 2614/H.R. 4919  they have renamed Kevin/Avonte's Law.
I oppose these expansions to the Alzheimer's protection bill because I see it as building a foundation to monitor and criminalize autistic children of color without physical incarceration. It is too much like pushing the culture of the ankle restraints and GPS tracking initiatives that is the latest morphing of the mass incarceration system, and our nonprofits are lobbying for the funding to support and promote it in the name of gaining police training funding for their organizations to aid in "protection from wandering."

This is terrifying.

There is a movie, a critically acclaimed and panned U.S. box office flop, called "Boxing Helena," about a surgeon who is obsessed with his neighbor, sees her hit by a car, kidnaps her, and amputates her legs and later her arms in an attempt to keep her "safely" under his control. In the Autism Wars for safety, parents and organizations, eliminating autistic input while marinating in fear that autistic loved ones or autistic charges in the care of organizations might wander off and come to harm, are behaving very much like Dr. Nick Cavanaugh, have obsessively taken action to sever privacy, agency, and self-advocacy from autistic children and adults in the name of ensuring safety. Training, that term that means very little in the scheme of things because it discounts those humans actually doing the wandering but generates income that could be used more effectively elsewhere (meaning respite and community accessibility and enrichment support services that might engage neurodivergent people with wanderlust) is now deemed to be the answer. Training and of course processing our children like any other person entering the criminal justice system. Parents have started databases kept by police of their children with their biographical information and DNA. Organizations are using the death of Avonte Oquendo to push legislation through to train, to give funding to law enforcement for training, with the goal of reducing "wandering behavior" and keeping their autistic loved ones "safe."

Boxing wanderlust.

Let's look at two cases of wandering and analyze the wide scope of an ill-defined legislative action and where my concerns lie.

1. The Case of Nadia Bloom 
Nadia Bloom, an 11-year-old who for some reason news organizations put the Aspergers label on rather than stating she was autistic, watched her father and sister leave for a camping trip to the Everglades with her sister's Brownie troop. She was excluded from such a trip. Carrying a book called "Lanie" about an adventurous girl who loves the outdoors, Nadia sets off into the alligator-ridden swamp and gets lost. A frantic search for her ensues. Four days later she is found by a neighbor who attended her parent's church, covered in mosquito bites but otherwise alright. Nadia later stated she got caught up in the wildlife and lost track of landmarks and time.

Paramedic Hollis Lipscomb tends to autistic hiker,
18-year-old Jacob Allen, after he was found
Thursday, Oct. 18, 2007, in the Dolly Sods Wilderness Area
near Davis, W.Va. where he went missing four days ago.  © AP
2. The Case of Jacob Allen
Jacob Allen was an 18-year-old nonspeaking autistic student whose brother took him for regular wilderness hikes to calm him from an otherwise very restrictive school life. Jacob also regularly camped and hiked with his family. He knew the woods and he had basic survival skills despite being nonspeaking, and despite being labeled a disabled person with a "mental age of a 3 or 4 year old." Per local West Virginia newspapers:

"Mr. Allen, of Morgantown, wandered away from his parents during a Sunday afternoon hike in the Dolly Sods Wilderness Area. "

Per CBS news: "After four cold days and four nearly freezing nights, searchers spotted the 18-year-old sleeping under a thicket of laurel in the Dolly Sods Wilderness Area, part of the Monongahela National Forest."

"It made sort of like an umbrella, but underneath it was bare and open," State Police 1st Sgt. Jim Wise said. "It made some type of shelter."

"Though Allen was less than a mile from the spot where searchers had found his hat Monday, the brush kept his location hidden until Thursday afternoon. Wise believes it also may have kept the teen, who is nonverbal, from wandering toward 20- to 30-foot cliffs."

"He rolled over after I called his name and he didn't have much in the way of reaction, but he recognized me. I could tell," said Jeremy Reneau, 25, the first to spot Allen. "

Throughout this ordeal, Jacob Allen's brother expressed incredible faith in him. He kept repeating that Jacob knew the woods and knew how to survive in them. No one listened. After Jacob was found, the story became one of an excuse to justify tracking devices.  What happened next was Jacob, who survived 4 days in freezing temperatures by knowing what to do, was fitted with an ankle bracelet. Here is a photo of the device being installed on Jacob Allen:

Here is a photograph of an ankle monitor, tether or ankle bracelet used to monitor criminal offenders when under house arrest or on parole:
Corrections officer installing ankle bracelet on inmate

The devices are the same and serve the same purpose. So Mr. Allen is under permanent house arrest and monitoring for the crime of walking too far ahead and becoming disoriented and lost.
No one wonders why he "elopes." This is their solution.

Spoiler alert: Boxing Helena was in the end a perverse dream of a surgeon about his neighbor. Acting to restrict any individual without understanding why he feels the need to wander and without his consent is inhumane.

Our nonprofits are all okay with doing this to any autistic child or adult unable to give consent. And we are all okay with that?

I remember being young. Going where I was not supposed to go to test my boundaries and test my limits at the behest of friends who didn't have much better sense than I did. I've also lost myself on forest trails but have been fortunate enough to have the basic knowledge to find my way out again. My mother lost my sister and I when I was a toddler during the press of a crowd at JFK. When she found us no one suggested she shackle us together to keep better tabs on us.

The term Wanderlust was created to define the human need to wander and explore. Entire peoples based lifestyles on nomadic life and some continue to do so today. So wandering is an instinct in us. I think wandering isn't the issue but how to ensure safety of those who do and how to understand this need is the issue and we are not addressing that. The zeal to embrace a cycle of police centered training and monitoring and restricting movements of our people as a solution among autism organizations with disregard for the consent of those who will be forced to endure it all is not only ableism in legislative advocacy, it is ethically and morally bankrupt as a solution to protecting children and nonspeaking autistic adults if they do not or cannot proactively consent to such measures. 

Now let's talk about how effective these tracking devices are:

For autistic children:
Missing autistic girl, 10, found dead after her wrist tracking device failed to send a signal http://bit.ly/jtSvXM

For convicted felons:
Convicted White Supremacist Evan Ebel killed Colorado prison director after his ankle monitor failed:

Any action that places disabled individuals under surveillance without their consent and restricts their movements is a violation of their human rights and tantamount to incarceration. Police have been trained, this did not stop an officer in Florida from aiming for nonspeaking autistic citizen Arnaldo Rios Soto and shooting his support aide.  Clearly acquiring even more funding to train them is not going to solve that problem either.

Funding these types of measures are not a solution. Boxing wanderlust will destroy those people we are trying to protect to supposed solve the wandering issue. Funding that could be used for more humane protections and patient centered research into the nature of wandering being used to do this is variant of shackling is wrong.

I am against these measures without the consent of those they purport to be for, and to my knowledge no one autistic has been asked to consult or discuss the impact on autistic individuals of Avonte's Law. It is an abomination to me that the name of an African American autistic teen be placed on a bill to fund shackling autistic youth and nonspeaking adults.

Friday, October 7, 2016

Meltdowns Over Meltdowns

Mu looking away from the lamp in the living room. Noticing this we removed the lamps.
Sometimes, all of us have meltdowns. Not slight upsets, or moments of rage. Full blown, life sucks meltdowns. If you don't carry an autism label and you don't harm yourself or others while having them, they remain private moments of vented frustration one may or may not be ashamed of. Hopefully, no thoughtless friend or family member will live broadcast your meltdown and we won't see it on Periscope or Snapchat.

Like steam escaping from a pressure cooker, once the meltdown is over, life goes back to being lived.

The problem with the concept of melting down and people like my son is the trifecta working against their right to show upset to any large or small degree. That would be the triple stigma of an autism label, not being able to speak about what is frustrating to such a degree that meltdown results, and being a large teen compared to their peers. Add to that my son being a person of color, and specters of possible meltdowns and all the potential imaginary damage that he might inflict during one sends people who are supposed to educate or help resolve his health issues into a fear-laden fantasy of endless catastrophic possibilities. Those possibilities drive critical decisions about everything from where he should be educated to what kind of quality of healthcare he gets and he suffers the consequences for this fear-based policy making in his exclusion from things that the ADA and IDEA are supposed to be there to ensure he is included in.

Like all humans, he loses patience and loses his temper.

He must be allowed to express that to some degree, as must we all.

It does not follow that every planning work about him should lead with how to restrain him, chemically or otherwise. This drive to drug him or place him in the care of men who resemble NFL defensive linemen "just in case" is one of our greatest challenges to counter and this makes his options as he grows older unjustly limited by what people imagine might happen should he lose his temper. We have refused several potential respite providers whose solution to our son's size was to assign someone to him large enough to "restrain him" if he should have a meltdown.

Contrary to popular belief, he's actually not a giant, walking, perpetual, meltdown.

I was saddened when even an activist who I respected, after a meeting, made a snarky comment about potential holes in the walls of any house our son might live in.

There were no holes to see in our house. So where did that remark come from? I guess it came from the presumption of his degree of disability naturally resulting in wall breaking. Not that damage to property doesn't or can't happen when someone neurodivergent has a meltdown. Sometimes autistic people get frustrated. It is a disability after all. And that activist should know. They were autistic too.  In short, most people, even those who should know better, look at our son and see this:
The Hulk Wallpaper, from The Avengers, Age of Ultron © Marvel Comics Group

Imagine what life would be like if your employers, your primary care physician, your dentist, your spouse always kept an adult size papoose handy "just in case" you lost your temper while at work, getting vaccine boosters, or coming in for teeth cleaning. Everyone on edge, expecting that eventually, you would turn green and rip your pants and when that happened, folk have to be ready to wrap you in a blanket or sit on you or call out the National Guard and thereby keep their walls hole-free.

This is what I am supposed to accept as the reality for our son.Yet they cannot understand why I would find such options inhumane and unacceptable. So let's go there. Let's discuss a moment when Mu just couldn't take it anymore.

We've had a hellish 48 hours recently. It began with a simple, irritant. A creature, either of four or two legs, set off a car alarm in the parking area right in front of our house. At an ungodly hour. When Mu was making a valiant effort to fall into an exhausted sleep. That was followed by too many emergency vehicles speeding to some traffic accident too close to this neighborhood, then dawn breaking and the HOA deciding that this would be a great day to mow every shared lawn space on this massive property. Mu was reaching the limits of his patience when a nearby neighbor, getting ready to leave for work, decided the entire neighborhood really needed to hear his taste in music.

Mu in StarTrek robe, with permission of the subject
 ©Kerima Cevik
What pushed Mu over the edge was in fact, me. I was walking into his room and took a step forward that sent pain searing through my hip so sharply I gasped and involuntary tears poured down my face. Horrified, he went into full meltdown, hitting himself. I quickly checked myself, made my expression as calm as I could in such pain, and repeatedly whispered, "it's not your fault, it is not your fault," until he looked at me and saw me smiling through my pain directly at him. He stopped immediately. A shy, hesitant smile began and I relaxed. I waited seated on the edge of his bed for the pain in my hip to crest and decrease. I suggested a shower might make him feel better. Running water and the StarTrek robe, a birthday gift from his big sister, sent further relief to him. "Let's get you snug in bed and try having you sleep again," I suggested.

When he was tucked in, his favorite music playing on his iPad, I leaned heavily on my cane and limped from his room. "Goodnight, son" I uttered. I moved two slow painful steps down the hall when I heard the words "I love you" waft from his room.

I am the most fortunate of parents.

He lets me know when he's angry at himself. And he lets me know he loves me. That is enough to let me know that this time, my educated guess about the trigger for many of his meltdowns is nearly spot on. That means I can truly work towards a resolution to future upsets by knowing why they happen.

No one is doing research on this. We are simply treating our loved ones like aggressive animals who need obedience school. That needs to change.

Someone I respect greatly told me that caring for a disabled person with intense support needs is a backbreaking, heartbreaking, thankless job. I agree it breaks down the body prematurely. People around you break you down mentally if you allow them to, and usually the ones thinking they are operating with the best of intentions do the worst damage. They demand to know what is wrong with your loved one, then immediately follow with things like "I'm so sorry." My favorite response is "excuse me why are you sorry?" "He's disabled, not dead."

While that may sometimes begin a needed conversation about ableism, the cumulative effect of it is like any form of gaslighting. It is something a parent must counter for their own mental health security. I won't go into having to fight against disparity in everything from health care service quality and delivery to educational supports. It wears down the spirit.

I have a son who demonstrates his gratitude for my care. Many parents don't ever hear that gratitude. They might see it in some fashion, a smile, and eye blink, a squeeze of a hand. But they never hear it. I know what this means emotionally. To know that your son wrongly believes when you suffer it is somehow because you're caring for his needs and being his support staff is a jolting revelation. I see his gratitude in the use of words he rarely feels the need to utter, in his displays of affection reserved for only three people in the entire world, in his attempts to increase his independence. His ultimate love letter, the performance art of his iron will to survive and live on after I'm gone is in his herculean effort to master small but critical life skills.

To understand that my son blames himself for my aging, for a life of harm visited upon me when I was very young because of my race, is heartbreaking. But armed with this understanding, I am able to reduce the dreaded meltdown episodes everyone else seems to fear to events so rare and so brief that when they do occur we are no more surprised than we would be if we had a bad day and just couldn't take anymore.

The criteria for what meltdowns are, why they happen, and exactly how to work with the autistic teen or adult towards a reduction in these events are never a focus of patient-centered research and they should be. Meltdowns are treated like the Gamma radiation that drives the Hulk, and our loved ones are discussed and managed as if any moment they will lift cars and burst through walls, and the National Guard must be called or the entire nation will be destroyed.

This is our story, not the story of another mother and her nonspeaking autistic son. I don't profess to have a "cure" or solution for these bouts of frustration either. I just hope that what Mu and I decided to write about meltdowns begins a better dialog than past articles like the Washington Post's "The Dark Side of Autism." We cannot act as if self-harm and harm to others is a pathological certainty; we need to  begin working towards a true understanding of what causes this state of desperate angst and fugue and thereby learn how to help our loved ones navigate it without chemical, behavioral or physical restraint. What we've done to date is a sort of traumatizing band-aid over the entire meltdown event. You don't force a band-aid on steam escaping a pressure cooker. You move to let steam safely escape. Our approach seems very wrong.

As for Mustafa and I, we are truly good. All the lies about testosterone as Gamma radiation igniting him into a raging teenaged Hulk were so much fertilizer. The truth of puberty and meltdowns? Well, he has acquired a great deal more facial hair. He may need to find gainful employment soon as he is eating us out of house and home. Also, he still doesn't clean his room.

In other words, he's acting like a typical almost 14-year-old.

Now if we could only get the rest of the world to calm down and not stereotype him, we might get some serious quality of life improvements and more stress-free community inclusion going forward.

In the meantime, he lives in a home where all human emotional moments are accepted, love is as abundant as understanding. and this seems to make those episodes rare indeed.


Thursday, September 1, 2016

Expanding On David Perry's 'Bad Disability Journalism: Autism as 'Genetic Devil''

Fred Dickey uses the smell of Bleach as subliminal messaging throughout
his train wreck of an article on autism. Pictured are Clorox and a bucket
from their #BleachItAway campaign 
I need to make some points about the heinous article professor David Perry discusses in  one of his blog posts. I chose to share it on the Autism Wars community page on Facebook. The discussion on the post is beginning to veer from the point of professor Perry's critique and my original reason for sharing it. So let me break this down from my personal point of view.

The goal of  journalist Fred Dickey is calculated and apparent. He’s written in this style (evil autie trope) nearly 10 years after numerous protests organized by autistic disability rights activists shut down everything from the infamous “ransom notes” campaign launched by New York University's Child Study Center (NYU CSC) to a series of horrific PSAs from misguided organizations like Autism Speaks. The media knows better than to present this dangerous view of autism by now. So we must ask ourselves why Fred Dickey wrote about autism this way at this moment.

Less than one year after the publication of two comprehensive histories of autism, the use of 1950's tropes to characterize disability could be in part Mr. Dickey not researching autism as a disability but rather imposing his personal ableism regarding autistic people into his writing. Mr. Dickey's goal appears to have been the deliberate sensationalization of a family crisis situation involving a vulnerable autistic 10-year-old and his overwhelmed mother. To the comments I've read on making this a teachable moment for Mr. Dickey, I sincerely doubt he is open to teaching nor is that a viable use of time and energy.  He stands to benefit from any sort of written attention  in terms of driving  traffic to his article and the chance to write more on this topic and do further damage. My opinion is such efforts are a zero sum game.

This is an election year that includes great pushes to pass some frankly terrifying attempts at mental health reform by regressing to draconian systems of care, so Dickey's attempt at painting the worst portrait possible may also have a hidden agenda supporting the case for funding the return of the mental institution model that locks disabled community members away from society to be victimized behind prison-like conditions.

Mr. Dickey may have also wanted to anger enough people to force a reaction, and by that reaction, whether  well-intentioned parents trying to educate him in autism awareness or angry activists calling him out on this atrocious piece of work, would serve to make this single article more prominent and more likely to facilitate Dickey being called upon to pen more controversial articles. Mr. Dickey may be using the Trump “strategy” of using shock value to gain attention. Unfortunately, his victim here is Rene Camacho, an autistic 10-year-old. No one should be allowed to do this to a child, and no parent should allow it.

The most effective protest that can be given in reaction to Dickey's sorry excuse for an article is to ignore posting any reaction to it or Fred Dickey and reach out to Rene Camacho and his mother instead since Dickey used them as props in his fake American horror story. Caring about the autistic victim and his clueless family is both the right thing to do and  the moral obligation of the entire community. Reaching out and offering to educate and help the mother, son, and siblings could save their lives.

But it is also important to point out inconsistencies in this story. This kind of deconstruction of destructive content demonizing disabled family members in crisis can go a long way to correct the way other vulnerable autism families view them and reboot the entire train wreck into positive support for the autistic people in crisis being victimized by such rubbish. Here are a few things that caught my attention.

1. How does a woman so overwhelmed she cannot keep furniture or cleaning fluids safe in the house and needing to constantly disinfect because of her son's alleged behavior, have the energy to establish and run a nonprofit that repairs the property damage done by autistic kids in homes?

2. If this Rene's behavior is as described in the article, why is there no mention of his school life and how these behavioral challenges impact it? This would indicate that Mr. Dickey couldn’t find any facts to embellish there, making it conspicuous by its absence. If Rene does well in a school setting then his problems are related to his home environment.

3. The mother in this article claims to have repeatedly discussed her son’s inappropriate use of cloth towels in the bathroom with him, but claims because of her son’s autism, she has now chosen to not have towels in the bathrooms. Two interesting things not intended by Fred Dickey to come out here do once we are able to move past our justifiable outrage at the disclosure of the worst moments and private challenges of a disabled child.

     a. Because she discusses having repeatedly told Rene what the appropriate use of bathroom towels are, we can conclude that Rene has verbal speech, and sadly, his mother and whoever continues the therapies mentioned in the article have not tested Rene for an auditory processing disorder. They have simply assumed he is being noncompliant because they presume his incompetence.

     b. It never dawns on Ms. Camacho that her son Rene may be trying to tell her that something about the toilet paper she’s supplying for example that it is causing him discomfort, and she needs to change her brand of toilet paper. She probably has never asked him if he is having an allergic or sensory reaction to the toilet paper in the bathroom. Because her fixes are based on the presumption of Rene’s incompetence, she sees her own son as behaviorally static, and she will never accept any answer to the question of why a particular behavior is happening in the context of agency. The fact that Rene might be trying to solve a problem by behaving in what those around him view as a maladaptive way requires the presumption of his competence and respect of his agency in his own life.

4. Dickey describes situations like the replacement of a broken window glass with plexiglass, the uprooting of a tree in the context of the family not being able to enjoy their own preferred object and activities because of the autistic member. He does not discuss the changes needed to adapt Rene’s home to make it accessible an accommodate his disability. Had the changes in the house been approached from the standpoint of ADA accommodation, it  would have given a qualitative difference to the article’s narrative.

5. Rene’s sisters have not been taught to engage him as a sibling. They have been taught to blame every unhappiness on their brother including the absence of their father in their lives. His activities to seek sensory input are viewed as behavioral problems rather than attempts to gain accurate input from an environment he is clearly having challenges navigating . No one is educating his sisters about his disability except to scapegoat and victim blame. He is seen as destructive rather than a disabled young man trying to gain vestibular control in order to focus. Someone needs to reach out to these people and educate the lot of them. This is happening in San Diego, CA. I hope this can be made to happen.

6. Ms. Camacho’s husband was in the U.S. Navy, where the nature of duty assignments involves long absences from family and the military spouse is expected to carry on alone. Protracted duty assignments are statistically the cause of a large rate of military marriages ending in divorce, particularly in destabilizing moments for the military member, such as transitioning out of active duty military life, which was mentioned in the article. So the ending of the marriage here being entirely laid on the shoulders of an autistic ten-year-old is overly simplistic and dangerous, even if it gives Rene's mother an excuse beyond her control for the failure of the relationship.

7. The most important trope in the article, Dickey’s use of Ms. Camacho’s anecdote of her father wishing to call a priest to exorcise the autism from his grandson should be a red flag to everyone reading this. It harkens to incidents like the death of Torrance Cantrell who suffered and died at age 8 because his mother's church was trying to expel the demon autism from him. Demonizing, othering, and reaching for unhealthy solutions to a young man whose had no outlet to organize sensory input, navigate his home environment, and interact without ableism with his siblings and parents is not going to end well. That is justification for outrage against Dickey. But he is truly unimportant. Those he used to gain a moment's attention in a content laden Internet are the people that matter.

Bad Disability Journalism: Autism as 'Genetic Devil' by David Perry
Disability Community Condemns Autism Speaks
The Ransom Notes Affair: When Neurodiversity Came of Age
Exorcising 'Genetic Devil' Autism: The Murder of Torrance Cantrell:

Wednesday, August 24, 2016

Mustafa's Dilemma

Mustafa N. Çevik Garibaldi, reading on our deck ©Mrs. Kerima Çevik
Arnaldo Eliud Rios Soto, the 26-year-old autistic man sitting on the pavement with a toy truck in shock in a viral video could be our son. Arnaldo sat beside Charles Kinsey, his trusted aid, helpless while Kinsey was lying on his back with his hands up, shot, with Miami police surrounding both men 50 feet away.

Our son Mustafa has so many similarities to Arnaldo that several people who know our family and have seen Mustafa in person remarked on how much Arnaldo looked like an older version of our son. Like Arnaldo, Mustafa is labeled Hispanic in ethnicity, has an equally lengthy name and heritage, carries the same disability labels although my son carries additional labels to nonspeaking autism and the added stigma of reactions to his name, given in honor of Mustafa Kemal Ataturk and Mustafa's father's grandfather. My son's skin is a tan hue that when combined with his curly hair makes it clear he is not what is considered "white" particularly when he is beside me, his Black, Hispanic, Indigenous mother. Like Arnaldo, he loves toy trucks, cars, and construction vehicles. Like Arnaldo, if a series of sirens sounded around him, and men 50 feet away began to shout at him, he would sit where he was, and hold to one of the objects that never leaves his hand because they provide him sensory calm in a world of violent, changing sensory overloads. Mustafa is Arnaldo's peer. Arnaldo's traumatic event, is Mustafa's dilemma, a potentially disastrous event I have fought to find a way to avert since February 27, 2009, the day I was told my son disappeared from the most restricted public school environment.

That story still hurts, and I've already spoken of it in bits and pieces like the essay "Afterlife ." Suffice it to say that amber alerts weren't created for missing autistic children. And no amount of police training prevents police who want to believe they need to shoot your disabled son or daughter from taking aim and firing.  If the chew tube in your daughter's hand looks like a knife to them, police will shoot to kill first and apologize later even when equipped with tasers and training certificates in autism and disability awareness.

Mustafa's dilemma should not exist. His choices should not be to either never be active in his own community or become a target by wanting to participate in it. People ask, as more autistic males of color like Arnaldo Soto and Tario Anderson are traumatized and more Black autistic young men like Paul Childs die, what can be done. I have been researching the same question since I learned brothers Lance and Ronald Madison  were shot for sport on Danziger bridge while Lance was trying to walk Ronald safely out of New Orleans after Hurricane Katrina. Those police officers, who pleaded guilty and were convicted of killing Ronald Madison, had their convictions overturned and were later released.
Arnaldo Rios Soto ©Miami Herald

The answer to Mustafa's dilemma is not to retaliate against innocent police officers or paint all police as evil. Nor is it to erase these continuing catastrophic events in the name of preserving the public image of law enforcement while these deaths and traumatic events continue to escalate.  But the answer does lie in understanding that it is the solemn duty of law enforcement to lead the reform of a culture that does not hold racist, ableist, and corrupt officers accountable for the mounting deaths and injuries of those vulnerable citizens they engage while on or off duty. I keep waiting for them to step up and disavow coverups and punish those who do wrong. Being a police officer does not and should not equal an exemption from the rule of law. Police leadership in other places has shown that proper police culture builds community trust, reduces risks to both vulnerable citizens and law enforcement officers while decreasing crime. Yet disabled victims, in particular, continue to be blamed for their own deaths, and lack of compliance or erratic behavior are always put forth as the evidence justifying the executions. What Arnaldo witnessed, what we all learned witnessing Charles Kinsey's shooting is very basic to my position that law enforcement autism awareness training alone is failing:
  1. Complete compliance and appropriate behavior make no difference to outcomes. 
  2. Lack of community training and the resentment of witnessing neurodivergent people included in communities was directly responsible for Charles Kinsey's shooting and similar catastrophic encounters but is being ignored in the lessons learned of each of these deadly events, 
  3. The trigger that sets the stage for the catastrophes is inaccurate or deliberately false 911 calls using three code words: black, male, and weapon. All other parts of the call, words like suicidal, or 'toy' before 'gun,' don't matter. 
Why have organizational toolkits, rhetoric, photo ops with powerful lawmakers and law enforcement authorities, autism parents who are law enforcement officers training fellow police, and parents with autistic adult offspring rushing to don the "autism expert trainer" mantle failed to stem the tide of harm washing over disabled people of color?

A. Everyone has skewed the root cause of the problem. Because the problem is misdefined everyone addresses the wrong areas to solve it. Everyone wants to make the solution a need to train police. Catastrophic encounters with police are an outcome symptomatic of the problem, not the problem itself. What people and organizations are doing is very much like seeing people dying in car accidents because of a manufacturing problem that causes brake failure and blaming it on the car's driver. Elaborate solutions are found for improving driving ability, knowing drivers are not the root issue. Cameras record trip data, engines won't start without seat belts, but the problem is the faulty brakes on certain cars, and everyone wonders, as those selling flawed solutions profit by them, why people continue to die. Neurodivergent people cannot continue to be the drivers blamed for the damaged system that is causing their deaths and traumatizing them.

Danziger Bridge, where Ronald Madison and his brother were shot by
New Orleans Police during a shooting spree after Hurricane Katrina
Policing is a community effort. Therefore, the primary route to defining the root cause of catastrophic encounters with law enforcement does not begin at what happens when a police officer meets a nonspeaking autistic person. It begins with asking questions like why, if everyone in Arnaldo's group home was known to the community, a citizen of that community would make a false report to 911 that would deploy armed police to an area where there was no gunman. It continues with why the caller isn't being charged with filing a false police report. Because the community knows the group home, and they know the route taken by group home clients and their care providers when walking. So when we look at each of these incidents, the root cause begins with why police were summoned in the first place, what information they were given, and whether the situation required police, guns, and violent endings.

While everyone is lining up to train police departments, no one is training communities to understand and accept neurodivergent community members. Policing is community dependent. Yet no one builds any community to support and include vulnerable community members. Oh everyone has something to say about this, but most never address this because again, we defined the wrong problem, and we are continuing to train police while our people continue to die and become traumatized.

Life qualitatively improves for everyone when communities act to truly include and support neurodivergent people .   The city of Matsudo, near Tokyo, has built a dementia inclusive community and saved dozens of lives and police resources in the process. Their approach is a potential global model for rebooting communities who must learn to include neurodivergent citizens as  the rights to autonomy and community living become as commonplace as they are just.

B. Correctly define the root problem, then make workable multidisciplinary solutions at the community and legislative levels. Having now accurately defined catastrophic encounters with police as the end result of the problem and not the problem itself, let's try to state the actual problem clearly. The problem is that communities are uneducated and unaware of how to deal with neurodivergent members exercising their right to active inclusion. Uneducated and unaware communities mean public entities like schools and public access areas as well as those public servants charged with administrating and maintaining them. Structural ableism then intersects with structural racism (and in our son's case, structural Islamophobia) and the toxic result is Mustafa's dilemma. I've stated multidisciplinary solutions in prior articles and interviews. Those proposals include suggested programs to help build peer-run respite centers for those with a psychiatric disability to recover from moments of crises and receive training in interdependence and supports to help them navigate their community. Or hold training sessions for small businesses and community public servants that help make public spaces safe for autistic people to interact with the public with acceptance and understanding.

C. Don't erase disabled AAC using, activists of color from being the voices of their own experience. There is an appropriation of neurodivergent voices in advocacy that is just heartbreaking. It is one of the residual tragedies of these events is that those who speak out about them with experience, cultural knowledge, and authority are erased while those who have privilege but no true grasp of what it means to live with Mustafa's dilemma set themselves up as experts and are bolstered, sometimes even provided with grants, to authoritatively discuss issues of racism or ableism without discussing the convergence of racism, ableism, and things like Islamophobia, Transphobia, or structural intolerance of psychiatric disability they cannot begin to understand quite simply because they are not POC who are disabled, AAC users, and survivors of such police encounters. So people who are like my son continue to die while others appropriate the voices of activists who can represent him because they are ASL users, nonspeaking, AAC using disabled adult activists who understand intersectionality and the impact on community barriers to inclusion.

Mustafa's dilemma, with its critical high-risk factor of nonverbal communication not being acknowledged by law enforcement officers engaging nonspeaking people, is not addressed sufficiently by disability rights activists who have verbal speech privilege. Its most recent disastrous result was the death of Daniel Harris, an unarmed Deaf community member shot by a police officer while trying to sign to him during a traffic stop.

I consider this an escalation, happening because the deaths of POC by police in general, and nonspeaking disabled Black people, in particular, were allowed to continue without accountability and with misguided calls for law enforcement training rather than reform of a militarized police culture  even in instances where videos clearly show excessive use of deadly force against unarmed people who were subdued, compliant, restrained, or otherwise unable to inflict harm.

D. Create annual, cross-disability, online actions to demand transformative change . I have never seen an annual event that flash-blogs awareness and calls to reform action about the deaths and harm of non-white autistic adults and children in catastrophic encounters with law enforcement. Why is that? I can tell you, dear readers, that one reason is squarely based upon who is dominating the autism conversation in our country. Affluent, white, parents who can keep their own divergent offspring from harm don't see this as an issue until a victim is white or affluent. Excessive use of force against disabled people cannot only matter when the victims are white. Activist across racial, ethnic, and socioeconomic divides should be shouting about injustice as loudly for disabled nonwhite people as we do for white disabled victims. Only this persistent spotlighting by an entire community makes an issue important enough to force lifesaving nationwide legislative change.

We need a noninstitutional,  community-based infrastructure that can respond to disability and mental health related crises without doing harm to the clients needing supports. This is one answer that arises from the accurately defined problem. Change must be multidisciplinary to dismantle structural ableism and racism.

 Multidisciplinary change combines community partners at both the grassroots and federal levels who do not normally collaborate to find real solutions to the properly defined problem and lobby together for funding to support those solutions. Things like having our most radical Black Disabled activists be part of task forces with their state and local police chiefs, disabled disability and mental health activists, and families to reduce violence against autistic and other intersected neurodivergent people of color.

When I say 'radical disabled activists of color,' I don't mean privileged by way of beginning in poverty and leaving it through education or success - I mean people who are still trying to navigate disability in inaccessible poverty ridden, over-policed communities, are known and respected in those communities for their grassroots activism, and continue to know first hand what Mustafa's dilemma looks like because they actually live it on a daily basis.

We individual activists can also start the inclusive community conversation with our own towns and city councils, our own local governments. What national organizations should be doing is presenting this case rather than rushing to stand in line at the police training queue. The less police have to respond to inaccurate 911 calls about neurodivergent people, the less chance of catastrophic encounters. It isn't really their job, you see, to manage disabled people in crisis. It is the responsibility of our entire community to embrace our people. The sooner we cease allowing community ignorance and ableism to keep our loved ones from living as everyone has the right to in this society, the sooner everyone can be part of bringing Mustafa's dilemma to an end.

Dementia Inclusive Communities in Japan Part of National Plan
The Death of Daniel Harris
The Tasering and Arrest of Tario Anderson
On the Shooting Death of Paul Childs
On The Shooting of Autistic Ronald Madison and others on the Danziger Bridge
The Shooting of Charles Kinsey in front of nonspeaking autistic client Arnaldo Rios Soto