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 treatment
NBC News
Study: Detecting Autism May Be Possible Earlier in Child's Life
On the Shortened Lifespan of Autistic People 
Why do many autistic people die before the age of 40?
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

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

Thursday, May 19, 2016

If I Die: In Memory of Courtney Liltz

"I think an ideology, a dangerous ideology, that preaches that people are better off dead than disabled is what led to Alex Spourdalakis' murder."
Ari Ne'eman

A young Courtney Liltz hugs adoptive mother Bonnie. ©CNN screenshot
Bonnie Liltz was given a reduced charge of manslaughter and sentenced to four years in prison for the premeditated murder of her nonspeaking disabled adopted daughter Courtney.  Courtney was a 28-year-old woman with CP and had a right to survive her mother's potential death. Bonnie's excuse was that she has severe health concerns and did not wish to die and leave Courtney back in an institution where she would receive terrible care.

Bonnie was 19 when she was diagnosed with ovarian cancer. The treatment at that time was basically radiation sickness inducing and Bonnie had devastating health problems ever since. She chose to adopt Courtney, fully aware of Courtney's lifetime support needs as well as her own frail health. During sentencing a parade of family, friends, and neighbors requested leniency. Her attorney repeatedly stated that Bonnie had dedicated herself to Courtney's care and that Courtney's murder was an act of love.


This is such an insult to the hundreds of disabled and chronically ill parents with high support needs who lovingly future plan and parent their own disabled children and keep up with changes in the law that have changed service providing for adults with intense support needs like Courtney. Courtney could have remained in Bonnie's home, the home she knew and grew up with if Bonnie had achieved home ownership. Courtney was adopted by Bonnie at age 5. So in the 23 years that followed, Bonnie, who knew she had a horrific health history and declining health, did not reach out to all these friends and family who are singing her praises in court and come up with the 24-hour nursing and personal care plan Courtney would need after she died? Did no disability service agency explain that Courtney could have the services she needed at home or in the community? The tacit structural ableism rampant in media reporting of these events leaves so many questions unanswered because their narratives leave Courtney erased from both her life and death, her existence defined by her mother as self-sacrificing care providing single-parent, her mother's friends and family relating her mother's struggles, and  her mother's justifications for her murder. Courtney deserves better.

Courtney with mother Bonnie in a holiday photo. Courtney
was murdered by Bonnie June 5,2015  ©Facebook
Why didn't Bonnie, knowing her own health was failing, set Courtney up in a community-based placement of her own with staff to care for her after Courtney's 21st birthday? Why would she just say to herself "If I die, what will happen to Courtney? Well, I'd better kill her then?" Why is it that in so many of these murder-suicide attempts the murderer seems to recover without any real harm but the disabled victim has no chance of survival?

If I die, and any of you, my friends, family, or  colleagues, say "she dedicated her life to that severely disabled son of hers" I will come back as a ghost and kick your collective asses. If you have any love and respect for me in life, do me the service of not cheapening my relationship with my son after my demise. Mustafa deserves better.

Let us make this clear. If I die, the only thing I want anyone saying about me and my son is that I dedicated my life to fighting for my son's right to have autonomy and as much agency in his own life as he can manage. Anything else is dehumanizing to my son, and my son deserves better than to be defined by the idea that I was unpaid support staff for him and I mothered him. He can't become some sort of object of pity in his dead mother's life. If I die, I expect our community to step up and help my husband and adult daughter ensure my son has his human rights to a free and appropriate education, a community-based living placement neither in a group home nor an institution and the supports he needs to thrive after I'm dust in the ground.

The only legacy any parent who is the primary care provider for a nonspeaking disabled person must leave is the memory of their efforts in life to guarantee the survival, autonomy and freedom of that disabled human to live as full a life as possible whether they survive to care for them or not. Everything we do, from their diagnosis day to the last breath we take, must ensure the survival of our offspring. That is what a mother's job is. That is my damn job. It doesn't make me a warrior mother. It doesn't make me superlative. It makes me Mustafa's mother doing my job by him and fighting for his human rights to respect, dignity and access to the same community I fought to live in as a woman of color. 

Murder is not an act of mercy. We must all stop propagating this lie that murdering a severely disabled loved one is an act of mercy simply because so many people are so ignorant of what it means to be disabled that their fear of visible disability drives these horrible thoughts. If you are a parent and have ingested this poison you must expel it from your heart. This ideology that people are better off dead than disabled is a terribly dangerous lie. Part of moving past that toxic culture and towards saving lives is to recognize that everyone has the right to an autonomous life and agency in that life. Courtney's life was hers to live and not her mother's life to take. Mustafa and I fought to bring him into this world and survived. I sure as hell am not going to take the valiant war he has fought to overcome the mountain of obstacles posed by his disabilities and dishonor our joint fight for survival by murdering him simply because I have been told my life may end before his.

Rather than fearing what the future might hold for our offspring help build a world of communities designed to accommodate everyone and stop being afraid to let your disabled children grow up and live an adult life. Imagine what their lives without you will look like and help them make that happen now. STOP KILLING THEM. Bend your collective parental wills and energies to making the world work for them. The ultimate failure in this cycle of violence against disabled adult children by their carers is a systemic one. Bonnie should have been shown that Courtney would not have to survive her death in any institution and Bonnie should have been able to transition Courtney into an autonomous community-based living situation at 21 that Bonnie could have overseen for these 7 years. I would argue that if Bonnie truly loved Courtney as much as everyone said she did, a secure future plan being implemented now for Courtney would have dismissed thoughts of filicide on Bonnie's part and she might have sought professional help for her own wish to end her life, and possibly two lives would have been saved.

What needs to happen is that we must all get to work on the foundational issues that can prevent these murders before they happen. That begins with all of us parents understanding that our deaths are not the end of the world for our severely disabled children. We must act now to ensure they are able to have an excellent quality of life both now and when we leave the world. Fight to save our children's future not to end their lives.

If I die, and my son survives, thrives, and remembers he had a mother who loved him, I know I will have left this earth feeling as if I have achieved paradise. His survival, his growing up to be a man who can exercise his human rights and civil rights and be accepted as he is my only goal. Remember that. Remember the tragedy of Courtney Liltz and the toxic ideology that led to her murder.  Remember Courtney as a woman who is being erased from her own story and don't allow it to happen. Be aware that filicidal and suicidal ideations require professional help. If you hear it, get that parent help. Don't enable it by supporting this ideology on any platform for any reason. Don't stand by and do nothing, then sing the praises of the murderer. Courtney is not better off in Heaven. Courtney is not better off knowing the one person she trusted murdered her. To claim a belief in God and take a life placed on this earth and meant to outlive you means you have no faith that God will protect the life He brought on this earth after you've left it. That is the ultimate in religious hypocrisy.

Justice was nearly undone by those who by their testimony eulogized Bonnie Liltz, and thus erased Courtney Liltz's value as a person with the right to live, decimating her rights as a victim with the right to justice. If we continue to allow this mentality to spread, others will target our children and decide it is okay to end their lives without their consent or our knowledge. So wake up and educate people about your disabled loved one's right to exist. Begin with your own friends, neighbors, and family.

I was leaving the hospital, being wheeled out to my transportation.The LPN, said: "your son is autistic? Wow, that's so sad." I turned in my wheelchair and replied, "Oh? Why?" She was so taken aback that she began with "well, uh, I mean, er, you know.."  I was firm. "My son is brave, resilient, and compassionate. He is also incredibly patient." "So it is not sad. It is an honor to be his mother and be part of his life." We spoke a while longer, and she left thoughtfully reflecting on what we discussed about Mustafa and his value as a person.

Begin by changing the conversation. No exceptions. What is at risk is our children's lives.

Monday, May 9, 2016

The Presumption of Incompetence: When Prophecy Fails

Caution sign with the word ableism in all caps

"Back in the 1950s three social psychologists joined a cult that was predicting the imminent end of the world. Their purpose was to observe the cultists’ response when the world did not, in fact, end on schedule. What they discovered, and described in their classic book, “When Prophecy Fails,” is that the irrefutable failure of a prophecy does not cause true believers — people who have committed themselves to a belief both emotionally and by their life choices — to reconsider. On the contrary, they become even more fervent, and proselytize even harder." 
- Paul Krugman, NYT Op-Ed, "When Prophecy Fails"

I was the victim of a seventh-grade teacher who fervently believed that I should not be a student in her class. She was a white supremacist and a true believer that no one my race should occupy the same physical space as anyone her race. She felt it beneath her to educate me. It didn't matter to her what my academic record was. In her mind, no Black student could ever be as intelligent as a white one. Her racism and my obstinate refusal to yield to it led to an inevitable standoff.

It happened in the girl's bathroom which doubled as the changing room for gym. I needed to relieve myself. She demanded I leave the bathroom stall door open so she could "be sure I wasn't trying to steal something." Finally fed up with the months of harassment, I refused. She denied me the right to enter a stall. There we stood for 15 minutes, my teacher smirking, certain that I would urinate on myself and she would have won by my public humiliation when three classmates, who entered to use the bathroom, walked in on us, teacher and student, simply standing there glaring at one another.
Graduation day for the author, seen at the far left in
an orange gown celebrating with a friend and her friend's
 mom  ©K. Çevik

"What's going on, Kendall?" a particularly bubbly girl asked, sensing the tension in the air and nonplussed. "I was just going to the bathroom, wasn't I?" I said, never taking my eyes off our teacher. Suddenly realizing she could not be seen to keep me from using the bathroom in front of the other students, she snarled "yes" and blushing furiously, left the bathroom.  That day I realized just how wedded to her beliefs this woman was. By the end of the school year, despite her best efforts, I passed the seventh grade. Her passionate insistence that a Black student could not succeed with white peers overturned, she continued to believe nonetheless that Blacks were inferior to whites.  After I graduated from middle school and went on to achieve in high school,  her belief in my race's incompetence continued regardless of the stellar students my color unfortunate enough to enter her classroom after my year of hell breaking that racial barrier was over.

There is an ableist trap that most visibly disabled nonspeaking individuals find themselves in. I call it the nonspeaker's dilemma. Quite simply put, once a person has been assessed to be nonspeaking and intellectually disabled, no matter what that individual does to demonstrate cognitive acuity, the presumption of incompetence is a prophecy that holds such a tight grip on its believers that it is nearly impossible to override. Society is so wedded to the myth that once a person is labeled intellectually disabled that person has no hope of cognitive competence that each generation ingests the presumption of incompetence automatically, unaware they are doing so. The myth has become a subliminal doomsday prophecy of society that lives a parasitic life within too many people who supposedly advocate and care for those who wear the ID label.

The false prophecy presuming incompetence is kept alive in part by the nonprofit industrial complex, which propagates this myth in order to drive the research funding upon which it exacts a percentage to survive. As a result, when a nonspeaking individual who also wears the ID label somehow manages to break through these barriers and  demonstrate the ability to communicate in any way, for example, type independently or with tech support or accommodation for disability, regardless of the method by which this is achieved, they will continue to be presumed incompetent. This is particularly true with nonspeaking autistics.

 The awful reality of this trap is it places nonspeaking disabled people who somehow manage in any way to demonstrate cognitive ability beyond expectations in an untenable position. I am a survivor of the harm done by bigotry-based presumptions of incompetence; I recognized this destructive attitude when my son entered the public school system.
Tech is power. Mustafa holds his AAC device to
communicate while nature watching ©K.Çevik

In the middle of an IEP meaning, when I asked how the team planned to increase executive function in my son throughout his school day, the entire team gaped at me as if I had just revealed I'd arrived from Mars. They were rendered speechless because they defined intellectual disability as profound intellectual incompetence. They believed that our son was in a static state of intellectual disability such that no intervention could increase his cognition or acuity. Now, how does any parent manage to motivate such an IEP team to generate any instructional design that might deliver learning to a student they have deemed incompetent to learn before ever attempting to teach him anything?

Over the years, our son went through several series of tests to gauge his baseline intelligence. At one point in his life, no medical expert had succeeded in getting a baseline intelligence score off him from any battery of assessments. We had arrived for his annual evaluations and another six hour day of intensive assessments. After three hours of refusing to participate or make eye contact with the formidable  doctor trying to test him, our son, age 8, decided enough was enough. He stood up, placed both arms on the doctor's desk, leaned forward, looked the doctor in the eye and retaining eye contact, raised his left hand and slapped the closed door of an office cabinet with the flat of it, hard. Still staring at the doctor, he grinned and sat back down.

At this point, it became quite clear to the good doctor what we already knew. Mu wasn't responding to the test because he didn't feel like being tested. His father was allowed to enter the testing room, at which point the doctor witnessed Mu easily demonstrating a mastery of fine motor skills needed to get an oatmeal cookie he wanted because it was nearly lunchtime and he was hungry. "How can we get him to do that again?" The doctor asked. "It has to make sense to Mustafa or he won't be interested in doing it" his father answered. Once the doctor respected that boundary set by her young patient and allowed his agency in the assessment process, Mu participated in his assessments and she became the first medical expert to get a baseline intelligence result on our son.

Despite witnessing this and direct evidence of Mustafa's mastery of topics like sight words and basic math concepts, experts still concluded that everything Mustafa learned was rote, that they were wrong about his complete lack of ability to retain but this did not prove his competence. They simply assured one another he'd somehow memorized the material, but did not understand it.  Our son will have to present his case for cognitive competence in such a way that it cannot be refuted. He and thousands of others like him will continue to be denied autonomy in their own lives until they are somehow able to prove they are competent to a group of experts and professionals who are such true believers that intelligence in intellectual disability is static that they will never accept the possibility that like intelligence in every human, cognition in those who carry any label can improve and increase with educational enrichment, assistive technology, and proper supports.

Society's belief in intellectual disability equaling incompetence is so strong that even when clearly visible evidence presents itself to override  expectations and the prophecy of intellectual disability equaling incompetence fails, some professionals go beyond simply accepting the myth and become evangelists for the belief that any ID labeled nonspeaking individual is incompetent.

If a series of social psychology experiments were run in which two sets of disabled individuals, (one who types to speak and is a nonspeaking autistic, and one who has a physical disability and can speak but is given an iPad and told to type as if they cannot use verbal speech,) were placed in rooms and medical and education professionals were told that both the nonspeaking autistic person and the individual with physical disability alone had no intellectual disability, and both communicated through typing, they would be treated with equal respect. Because when the intellectual disability label is deleted from the equation, people base their opinions on what they quantify and observe rather than their biased presumptions about any individual. 

This is the largest barrier for my son and his nonspeaking peers. Not incontinence, or behavioral challenges, or health concerns. It is the fundamental prophecy that the label of intellectual disability, when added to their nonverbal state, means a degree of disability so 'severe'  that no effort on their part can prove their competence. This taints their entire lives, robs them of autonomy, destroys potential avenues of funding that could drive research into more efficient Augmentative Assistive Communication technologies and community-based supports and  solutions based on the principles that autonomy and active participation in society are their human rights.

With the understanding that when prophecy fails, and some nonspeaking individual manages to prove themselves competent, it is our task as stakeholders to ensure that the individual is not objectified, treated as unique, or isolated from their nonspeaking peers in any way, we must push on and ensure that it is understood that we do not know enough about how our own brains work to grasp how competent any individual is.  While trying to form ideas on how this ingrained mentality can be countered, I realized something that is being inadvertently done that must not be done.

One way of making sure it is clear that anyone who is nonspeaking and using AAC supports to communicate is doing so on their own is to allow them to write without editing their words. The Amplify Autistic Voices project was an unsuccessful exercise in seeing how many unedited autistic voices could be amplified and accepted as they were. The primary reason for the failure of such a concept was as some of those voices gained popularity and demand for their content on platforms with greater audiences increased, individuals were inadvertently objectified and othered from their peers. Further detriment when gaining a greater stage for these nonspeaking individuals was once larger platforms were given nonspeaking autistic authors' content, their words were handed to editors, 'tweaked', 'refined', and the result was that further down the road, this caused the competence of very accomplished nonspeaking individuals to be questioned.

The road to hell is paved with good intentions.

I'm going to try and explain what I mean with a story that is a perfect illustration of what happens when someone's right to speak in their own voice is tweaked, improved, or edited. I was once a coordinator for interpreters sent to immigration court. One day my manager called me to their office, telling me the DOJ had been contacted by the court in Utah over a new French interpreter. They wanted the interpreter retrained or disqualified. The interpreter, who was a native speaking French immigrant and language professor married to an American, was horrified. "How could the judge question my French?" She demanded. I asked her to go over everything she'd done in court that day without disclosing case information or compromising her client. Half way through her narrative I realized what had gone so horribly wrong. The refugee, an individual who had spent their entire childhood running from violent conflict in their homeland,  was speaking a dialect of French mixed with a local language and had a 5th-grade education. The professor had decided to "correct" the refugee's French errors as she interpreted them so as she put it, 'the court was more able to understand the refugee's plight.' Thank God the individual had other interpreters prior to that hearing. I explained to the professor that it is a court interpreter's job to translate verbatim the voice of the individual not edit, appropriate, or embellish it. In changing a refugee's voice her client went from someone who spoke the colloquial French of their ancestral home to someone who suddenly commanded a university level French vocabulary, she could have caused the refugee to be imprisoned for fraud and misrepresentation of his case to the U.S. Government.

The moral of the story is that the French interpreter came very close to causing irrevocable harm to the client she was supposed to be a conduit of by appropriating her client's voice, acting based upon her presumption of the client's incompetence to 'tweak and improve' his case in court. The prophecy of the presumption of lifetime incompetence for nonspeaking individuals who are made to carry the ID label is similarly perpetuated by two opposing well-intentioned stakeholder groups that harm when they mean to help.

On the professional/service provider end, there are those who cling to the status accompanying their professions as acolytes cling to false prophets.  They wrap themselves so tightly in the prejudices inherent in what science knew about intellectual disability when they were trained that they are unable to entertain the possibility that someone they were taught to believe would be perpetually incompetent must ethically be presumed competent as better assessment methods and assistive technology redefine and expand the meaning of competence and autonomy across neurology. If a professional who has spent a career erasing the agency of competent human beings suddenly learns they have harmed a great many people who they assumed they were helping they must live with the unthinkable guilt of having harmed those they were trained to help. This alternative truth, that a competent individual exists within their disability and rather than spending the resources to reach, teach, and support them those who claim to advocate for them in fact erase them from agency and control in their own lives deals a blow to the validity of many experts that they are unable to accept. This is my hypothesis on why the tremendous emotional investment in a respected professional identity places a person in such an ableist position that they refuse to dismantle any belief that might threaten this even if it means rationalizing away any proof of competence presented to them by a disabled individual seeking respect, autonomy, and a voice in their own lives.

On the parent/carer and ally end, there is the French professor's error in the story above that must be avoided at all costs. The appropriative tweaking and editing of original content written by nonspeaking people that render the end product so unrecognizable from the original draft that the authenticity of their authorship begins to come into question must end. The much voiced but little-understood concept of acceptance requires allowing our nonspeaking disabled colleagues, peers, and loved one's the power inherent in communicating without editing in their voices as much as possible. The cruelest thing that has happened to my son is the ease with which his accomplishments are dismissed as the work of a lesser being somehow taking cues on how to respond from a mother who loves him. We cannot accept this anymore if we wish the kind of genuine progress needed to end the propagation of the presumption of incompetence.

We all must continue reassessing and ameliorating our own structural ableism and not become a barrier to our disabled loved one's autonomy.  If we don't begin with self-examination and self-correction, at best we will be in the position of those three social psychologists, helpless observers chronicling the unfolding of true believers in the myth of presumption of incompetence, stuck on the sidelines watching them spouting doomsday prophecies well after disabled nonspeaking people present evidence that such prophecies have failed.


Dedicated to our son, Mustafa, his hard-fought autism war to be heard, believed, and respected as he is, and my husband Nuri, who exhausts himself to give his wife and son the opportunity to keep fighting on.