Autism, Accommodation for Disability, and Traumatic Normalization

Mu and his adult big sister in front of the Mother and Child statue in downtown Greenbelt when Mu was six years old.
Image of a child in a yellow winter coat and black slacks leaning on a young woman in a green winter jacket and dark jeans
both have their backs to the camera and are facing a giant sculpture of a mother holding a small child. ©Kerima Cevik

I try to stay out of autism parenting arguments in the community. My son doesn't fit the mold of those parenting issues being debated, and such discussions only end with my being furious at the lengths parents go to try and force normalization in their children the way Cinderella's stepmother tried to force a glass slipper that clearly wouldn't fit on Cindy's stepsisters. But sometimes speaking up saves lives and may change things for the better. So I'm going to write about an aspect of autism parenting.

Someone on social media decided to post a question. They asked if it was better to make an autistic child comfortable than to challenge them. The inquirer followed by saying this was a point of heavy debate in the autism community and someone had advised them that it was better to make their child comfortable implying that parent posting the question didn't agree with the idea of comfort over challenge.

The entire question was wrong because it was founded on the idea that normalization of an autistic child, by any means necessary, is the right ultimate goal when curing them is not possible. This ignores the reality that autism is a disability that requires, by law, just as much adaptation, accommodation, inclusion, and support as any physical disability would.

Autism is a lifelong disability. Autism is not "curable" by ABA. Enforced behavioral modification simply masks the outward expression of autistic behavior but can cause residual harm that presents in post-traumatic psychiatric disability. Parents often believe that the surfacing of mental health concerns in their autistic children expressed in anxiety disorders and PTSD are caused by autism when in fact they are part and parcel of a lifetime of no accommodation for their offspring's disability, traumatic enforcement of normalization in the guise of parental and professional "challenge over comfort" attitudinal ableism and treatment-related stressors accumulating over time.

Back to the question. Is it better to make an autistic child comfortable or challenge them?

What the hell does that mean?

Where daily life, care of self, care of the personal environment, and overcoming bars to access and disparities in everything from health services to educational equity are challenges which already exist for nonspeaking autistic youth, creating the "making them comfortable v challenging them" question as some adversarial issue dividing the autism community skews the autism conversation away from the true question.

Mu, in a gray t-shirt and gray shorts, Hispanic presenting
male with curly black hair and light brown skin uses
his AAC device, an iPad with TouchChat HD,
while sitting on our deck. ©Kerima Cevik

Why isn't the question "why hasn't the entire autism stakeholder community met and worked out the problem of how therapeutic support can be given without doing further harm to the autistic consumer, particularly when we now know that at least one generation of autistic adults have been permanently traumatized by how therapies are provided now?

When parents set incorrectly high expectations and later find they can't normalize their offspring to their satisfaction they begin a cycle of frustration based abuse that ends in tragedy.  Autistic disability rights activists discuss their own lifelong traumatic treatment experiences in the hope of sparing today's autistic children the long term damage they must live with because of these attempts to normalize them instead of providing the accommodations and supports needed to improve autonomy. If autistic parents were told their child had a physical disability that required they use assistive technology equipment like a wheelchair or cane, they would not then feel they must challenge their children to move through their environment without a wheelchair or cane. They would instead fight for the best equipment available for their offspring. Fundamental to the rift in the understanding of what autism accommodation, services, assistive tech, and inclusion should look like is this incorrect concept that autistic children must be forced to adapt to everything. This pressure increases the more a child can pass for what is viewed as normal. It increases if a child who might be able to communicate at a much higher level with an assistive technology device can produce single or two-word utterances. The goal with any other nonspeaking population is communication through AAC. With autistic nonspeakers, it is forcing two-word utterances and declaring their incompetence.

It is important not to conflate challenging a child after accommodation for a disability and forcing a child to a parent's view of what a normal person looks like. Forcing normalization is a clear sign that parent does not understand the scope of what encompasses autism as a disability and that is dangerous. Acceptance of disability is not lip service during Autism month where we can say we accept our children while compartmentalizing away the reality that they are disabled. It is critical to grasp that we are parenting disabled people. It is imperative that we be certain our children who can pass for typical are assessed for auditory, sensory, and cognitive processing disorders often missed in diagnosis because the child presents as "high functioning. It is critical to push for assessments that do not exist right now that can measure the same auditory, sensory, and cognitive processing disorders in nonspeaking autistic children and adults. Not knowing if a nonspeaking person processes what is said to them in a typical way is a major bar to any treatment, therapeutic support or communication support they need as disabled clients.

This is not a question of "comfort v challenge." It is a question of supporting decision making, educating your children about the scope of their disability and how to keep their mental health intact by using accommodations and assistive technology to support their processing and navigating a world not built for them. It means allowing coping strategies to remain in place as long as they aren't self-injurious.  It means actively seeking humane solutions to self-injurious behavior. It means when aggression occurs, understanding whether the culprit is something like your offspring being in that eight percent of epilepsy patients reacting to their medications with so-called Keppra raging.  One diligent autism mom tracked her daughter's rages and realized over time that the culprit was environmental and in fact an additive in McDonald;s fries. Once the culprit was discovered, the young woman was calm and happy.

Yet we parents are being taught that everything society considers wrong with our offspring is the fault of autism. More lives have been destroyed by this attitude than I can count.

This journey isn't about how embarrassed parents might feel that our children are disabled. It isn't about how things look to others. It is about preparing our disabled children to survive and navigate our world with as little stress and as much independence as possible. It is also about teaching them that society is also interdependent, and it is perfectly natural to need help and supports to safely navigate their lives.

Let us begin by understanding our own offspring as much as we are able. Let us realize everything we try to do with them on the excuse we are doing something for their own good has consequences.
Let us get our own headspace together so we can mentor confident, happy, autistic adults who know they are disabled and are fine with who they are.

Peace

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:
http://www.ibtimes.com/evan-ebel-killed-colo-prison-director-after-his-ankle-monitor-failed-1167345

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.