Sunday, May 21, 2017

Hobson's Choice, Nonverbal Autism, Technology, And The Myth Of No Future

A Hobson's choice is a free choice in which only one thing is offered. Because a person may refuse to accept what is offered, the two options are taking it or taking nothing. In other words, one may "take it or leave it." Wikipedia
Mu in a plum colored t-shirt, at age six on climbing bars at  the playground ©Kerima Çevik
There is a rhetorical question that representatives of institutions and service providers continually ask parents of autistic people. My husband and I first heard it at an IEP meeting when our son was four. It is a two-part question. 1. What kind of a future do you see for your son? 2. What will you do with him when he's 21?

This line of inquiry is meant to build up faux hope as we parents are supposed to be mourning for our autistic offspring as Edgar Allan Poe mourned for his lost Lenore. Then they lay out their Hobson's choices. "Does your son like trucks?" They asked, not really caring. "He likes watching construction vehicles in action," I answered, wondering where this was going. "Well, maybe we can train him to be a garbage collector." At another meeting, I answered the rhetorical question with, "He loves to sky watch by looking from his picture window on days of inclement weather." Their response was "then he'd make a great janitor." His father and I stared at one another in shock, wondering what one thing had to do with another. At one point I tried to discuss his strengths. "He likes lining up particular things. When he was a baby I used to give him plastic juice bottles filled with water dyed in rainbow colors and he'd line them up to look exactly like sunlight refracted through a prism. It amazed us." Their answer? "Oh, he's a trainable [insert r-word] that's great." "He can be taught to collect shopping carts and maybe even stock shelves."

 Because he's a nonspeaking autistic. Nonspeaking, to them, always equaled nonthinking. They don't actually listen to what you are saying. They don't actually see your children's worth when observing them. Their one-two punches, the rhetorical questions followed by their Hobson's choices are part of a myth that nonspeaking autistic people have no future. Their personal bias morphs into the professional opinion that they can't conceive of living without verbal speech, or navigating life with a combination of no verbal speech and intellectual disability so it is not possible.

Very recently I was asked the "what do you see your son doing in five years" derivative rhetorical question. I had to bite my tongue. I wanted to answer "I see my son continuingly chemically altering his RNA to adapt to changes in his environment, the way cephalopods do." Or "I see my son as the first nonspeaking President of the United States." I really considered just giving one of those two answers and watching that interviewer's face as they tried to process what I had just answered.

I'm tired of the entire "your son has no future so here are your Hobson's choices that you need to pay for" circular rhetorical question thing. To counter it,  I thought I'd discuss my real view of the possibilities for a community based, minimally invasive, autonomous life for my son after he grows up and as he ages in a series of posts beginning with this one.

Mu at age 5 signs what he wants to drink and what groceries he wants to buy
while his sister puts them in the cart. He keeps himself on
her arm to keep himself oriented © Kerima Çevik
From our parental perspective, we see that since our son's diagnosis, technology has directly and repeatedly improved the quality of his life and therefore our lives as well. This means future planning choices being presented as his only options right now won't be valid when he's 21 and therefore should keep changing even as I type this article. What bothers me is that the historical structures built to advocate for autistic stakeholders are heartbreakingly slow to keep pace with the technology that changes how we are all living.  That means those offering choices in future planning for nonspeaking autistics fail at the job of providing modern solutions in assistive technology, accommodations, and supports meant to truly include nonspeaking autistic people in communities of the future. Structural ableism and a hierarchy of disability bias against nonspeaking autistic clients are firmly sitting in the way of achievable solutions.

Particularly in autism services, solutions that allow nonspeaking autistic children and adults to leap forward don't come from established channels, they come from completely new directions. Before the iPhone and Proloquo2go AAC, a Dynavox or similar AAC device was not affordable for nonspeaking autistics of color without a source of funding such as Medicaid. Most schools, therefore, rejected the urgent need for students like my son to be taught to use AAC devices and generally offered only minimal speech supports, despite the clear fact that ability to communicate is the primary challenge of a nonspeaking autistic pupil. Apple's mass production of iPods and iPads began the first steps to communication rights for nonspeaking autistics in particular. That is a transformative change in one major aspect of autistic assistive tech that no one in the service provision or professional service industries saw coming.

Education pathways for nonspeaking autistic students are stagnant because school administrations don't accept that nonspeaking autistic students have learning potential. We have the technology and the infrastructure, as shown by Khan Academy, Open Courseware and things like audio book services, as well as other free or low-cost quality online education models, to offer nonspeaking students lifelong learning possibilities to challenge and stimulate their minds wherever they live if they are given online access and the effort is made to adapt the learning to provide accessibility. This education enrichment, with goals to prep for everything from a literacy certificate to GED certificates, and even certifications in things that interest them in post-secondary education, are never offered as goals for nonspeaking autistics trapped in an education system that does not allow them to graduate at 21 with a high school diploma. No option to keep learning exists in the Hobson's choice of future planning.

Financial pathways do not plan for future banking technologies or how our offspring can be prepared to manage funds. It is simply assumed that we have no choice but to put our children's financial future  in trust, in the hands of attorneys and hope those attorneys don't turn out to be like disbarred lawyer Julie Kronhaus, who embezzled $1.5 million dollars from multiple clients' trust funds, including a disabled young woman whose family had won a settlement and put the money in trust for her care. Trusts are the only choices given us. We are simply supposed to accept that this is the only solution available to transitioning nonspeaking autistic adults. Yet we are nearing the end of the age of paper money, and as financial institutions rush to get the technology necessary to produce legal tender similar to Bitcoin, and Amazon is changing the way we shop such that a cash register is no longer necessary and food deserts can be overcome with an internet connection, disability service organizations and service providers continue forcibly pushing future financial solutions that increase risk of theft or fraud.

Community housing pathways always seem to default to group home placement after the passing of parent care providers and this means that autistic adults who may have never been in a group home situation in their lives are suddenly removed from their own homes and placed in institutional settings when technology makes such an action expensive and completely unnecessary.  No one considered changing laws so that estates inherited by nonspeaking autistic adult offspring can be future planned and adjusted for direct to service in-home care that is minimally invasive and keeps the disabled adult seamlessly in the family home that they know how to navigate and are accustomed to. No one has considered developing smart home technology to assist in keeping orphaned autistic adults in their homes for the remainder of their lives. No one thinks of high-tech micro-housing as a safe and affordable community living option for nonspeaking autistic adults. That would take work, foresight, caring about their clients. Unfortunately, independent parent driven community living models are basically private institutions, complete with prison guard-like security staff and the traditional highly invasive staffing for care, like this example from North Texas.

I do not support traditional group home or full on institutional housing models being independently built by an increasing number of affluent groups of parents. I am saying we autism parents are acting against the basic principles inherent in the Olmstead Decision with these horrific housing options when what we should be working on are options like minimally invasive, community integrated solutions for our grown children. Just because we are building it doesn't mean it is any different from any other mental institution, even if parents with the best intentions create it.

We need to rethink future planning for our transitioning autistic people. We need to start thinking about what senior care looks like for aging autistic people who have the human right to continue to live in the communities they've spent their lives in after those who were their lifetime care providers pass away. And I'm sorry, that is not throwing them in custom built groups homes or private mental institutions with guards and staff.

 In 2010, the first MedCottage, a smart home for senior care as an alternative to nursing homes, was rolled out and marketed.

These pods are far from perfect, but they demonstrate that when we are considering solutions for transitioning autistic offspring or aging autistic siblings who might require intensive supports, we need to push boundaries beyond the Hobson's choices offered us and fight for Olmstead decision compliant adaptive housing options like these pods that keep our loved ones in our families and in our communities as is their human right. We need to leverage existing technology and develop assistive technology solutions that expand future planning options for autistic people. This begins with expanding our thinking about what our autistic loved ones can do, how they can live included in society rather than isolated, guarded, and invasively managed distantly from it. Begin with pushing back against the tide of gaslighting professionals and service providers forcing Hobson's choices of no-future so institutionalize myth on us.

Here is where I see my son in the future:
My son, like any young adult, will be able to own a car, because driverless cars will be in mass production and one will be adapted to his needs, to take him directly to and from his daytime appointments to home based on his schedule. Emergency locations will be there for him to choose from a touchscreen device should he feel unwell when entering the vehicle. 
My son will have a job in something he's interested in, even pushing shopping carts, not because someone decided that is all he's good enough to do, but because he is motivated, interested, and has the will to do that work.
My son will be housed in a minimally invasive, smart living space that he will be able to live in and manage as autonomously as possible. The bathroom will be self-cleaning. The floors will be cushioned to prevent broken bones in case of a fall, and they will be maintained by cleaning bots. He will be able to prepare prepackaged healthy meals in a microwave that will sense what kind of food is in it and cook said food without the need for pushing additional settings. The microwave will not open until the hot food cannot burn him. He will also have a smart refrigerator that knows when groceries are needed. A plan will be in place to ensure at home supports are provided as he transitions so that in the event that one or both of us, his parents, pass away, he will be able to remain in that home without interruption and he will already have what support staff is needed in place to care for him. He will not need to have cash around nor will any staff have access to payment systems or funding. Grocery, household goods, clothing, will be sent as they are needed through buying habit bots determining when such things are in need of replacement and will be paid for without money changing hands. The house will be powered off the grid and therefore bills will not be an issue. A non-gasoline backup generator will come online in the event of an emergency. The pod will be able to withstand high winds and be equipped with a sprinkler system in case of fire. Outside meals will be purchased from an interactive touchscreen device not requiring verbal input and paid for prior to leaving so food can be either eaten at the location, picked up and brought home, or delivered without money changing hands. Purchases for entertainment venues and social events will be handled the same way. 
Each day he will be able to log on to an education program and retain knowledge as well as be challenged with new learning goals and coursework. This will continue at his pace for the rest of his life. 

No disabled person should live in poverty simply because they have transitioned to adulthood.

This is the future for all disabled adults as it is meant to be.
Make that future happen, don't fight for less.

On the Right to Community Integration for People with Disabilities

The Embezzling Trust Fund Attorney Who Raided a Disabled Young Woman'sTrust Fund

Parent built isolated, guarded, institutional mass housing project for high support need autistic adults with medical staff onsite

Google's Driverless Car Test Drive
Self-Driving Car Test: Steve Mahan
A First Drive

About MedCottages 
In the News
MedCottage Classic Plans on Sale for $29

Ford's Driverless Cars

The First Smart Refrigerator

Friday, May 12, 2017

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.


Tuesday, April 11, 2017

Nonverbal, Nonspeaking, Autistic Word Navigation

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

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

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

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


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

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

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

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

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

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

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

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

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



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

More on The Language of Autism by Michael Forbes Wilcox:

Sunday, April 2, 2017

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

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

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

So let me give you all some backstory.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Thursday, February 16, 2017

Autism Research Battle Fatigue

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

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

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

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

Here is what the headline should have read:

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

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

That is it.

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

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

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

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

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

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

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

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

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

On New Autism Research
Scientific American 
Autism Starts Months before Symptoms Appear, Study Shows
Flagging children early offers the possibility of more effective 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.