#SaveArnaldo : How Much Is Lifelong CPTSD Worth?

Image of Arnaldo Rios Soto, a nonspeaking
Latinx autistic young man in a gray hoodie
with crew-cut brown hair and a clean-shaven face
smiling broadly for the camera. Credit
Matthew Dietz, Esq.

If your child's school staff,  then his residential care home staff,  harm your autistic child and one terrible day, you get a call that the behavioral aide your child finally connects with has been shot and your grown child, having survived so much, was shot at while sitting in the street holding his toy truck, handcuffed, interrogated, institutionalized, and now has permanent complex PTSD caused by the mishandling of a catastrophic encounter with law enforcement, can you think of a price tag that with make it all go away?

That final traumatic event, the moment Arnaldo Ríos Soto screams out in his frequent nightmares in the single word utterance "POLICE", cannot be fixed or undone. Any parent of an autistic young adult would hold those responsible to account for the lifelong care he needs. The state of Florida is accountable for Arnaldo's lifelong, 24/7 care and support. This should not even be in question.

So why then was the cost for his lifelong care cut? Lifelong damage was done. Irreparable damage. The kind of trauma Arnaldo experienced cannot be undone. Put simply it is the obligation of those who caused this trauma to care for him. 

Arnaldo was evicted from his home because the state cut the funding needed for his care in half. He was evicted after a contract was signed saying his care facility would continue his care despite the funding shortfall. His former care home should lose their license.

I have been steadily updating on Arnaldo's situation because but for the grace of God Arnaldo could be my son.

I wrote an essay on the eve of Arnaldo's eviction that was published in Poor Magazine, but still, no one seemed to give a damn. So I'm reposting it here. Let's hope someone out there listens this time.

Arnaldo Rios Soto, Autistic, nonspeaking, and Latinx, was evicted from his current group home.  

His ongoing crisis brought back a personal memory. 

When I was in my teens, I worked summers as part of the Youth Conservation Corps. One of our projects was assisting efforts to reclaim the Palso strip mine. A group of us were standing with our supervising forest ranger on the top of a mountain of slag looking at miles of blasted fields and ponds filled with acid runoff when suddenly the rubble beneath us shifted and three of us tumbled downward with the landslide. The other two managed to stop and scurry back up. But each time I moved, the mountain seemed to respond by raining more debris around and over me. It was an avalanche. I was sure I was going to die that day.

If we were to create a timeline of each pivotal event in Arnaldo Rios Soto’s life, I believe those traumatic moments would morph into a rubble mountain of suffering and trauma. Arnaldo has now seen the ground shift beneath him one too many times. An avalanche is happening, and Arnaldo, like me the day I hung suspended on a slag mountain, is scraped, bruised, too young to die. The detritus of a failed disability care system falling like rubble all around him, he has now been evicted from another group home on the excuse that money was cut from his care budget.

Arnaldo’s life is measured by how much profit he makes for those who offer services to house and care for him. His family’s lives have been punctuated by seeking the land of autism care Oz, that place where Arnaldo won’t be beaten, chemically lobotomized, where someone, anyone, can truly see him as a human being and not a collection of behavioral reports, untreated complex PTSD and medications. They are tired, burnt out with disappointment in that shattered dream of an American mainland utopian disability care system they sacrificed and journeyed from Puerto Rico for in vain.

What will happen to Arnaldo now?

What happens to Arnaldo now is up to all of us. We are his family now. He is in our care. So we need to understand how and why Arnaldo matters. Arnaldo’s situation is greater than his news headlines. His situation right now is bigger than my personal emotional reaction, informed by the fact that he once looked so much like our son that both my husband and I cried out in shock when we saw that video of him sitting in the middle of the street, holding his toy truck, police shouting and Charles Kinsey shot and bleeding beside him.

 It is greater now than Arnaldo not understanding that he was about to tumble down that cruel mountain of police interrogation for the crime of sitting in the street holding a toy truck while disabled and brown. Arnaldo is now the symbol of what it means to be a nonspeaking autistic male of color at the mercy of a system that views the Black and Brown disabled body as a threat. This system, founded on eugenic attitudes, views those with complex support needs as burdens or cash cows. When the profit margin is not enough the cash cow is sent to the slaughterhouse. For someone like Arnaldo, who was harmed by agents of the state, leaving him without shelter and the complex support he needs is tantamount to destroying his psyche entirely. And returning him to a hellhole institutional setting like Carlton Arms is unthinkable and unacceptable.

What that means is that what happens to Arnaldo now has the potential to impact how future cases like his are handled across our country. If we can act together and change his destiny it will demonstrate that our community has the power to transform the destinies of others brought low by this system. It means that the lifetime efforts of hundreds of disability justice activists have managed to change something. We need this hope because we multiply marginalized people have become the targets of hate groups instigated by those who feel that the current administration has given them a free license to hunt those who are oppressed and vulnerable. So what I am doing right now, typing, wheezing with asthma, pushing past joints that ache to write this is reaching out to say this is the time when all of us, ALL OF US can help Arnaldo. #SaveArnaldo can trend on every social media platform enough to make those who made the decision to cut funding for Arnaldo’s care rethink their decision. Organizations can support the AutisticSelf Advocacy Network’s leadership and issue statements in support of the Sotos family. Legislative advocates can reach out to their lawmakers. This takes a few moments, a click, a retweet. But multiplied exponentially, collective cross-disability community action could be an avalanche that forces a positive resolution to Arnaldo’s crisis.

As I was sliding down a mountain of slag towards my death, two other people volunteered to lay flat, one grabbing the ankles of the other, and acted as a human rope. Five others held on to the arms of the person laying flat on the top of that mountain for dear life. Then they all heaved up and backward.

Together, they saved my life.

I am asking you all to make a human and virtual chain. Get him off that sliding bureaucratic slag mountain and back into a place where his family can see him every day and he can be safe and cared for. #SaveArnaldo.

Peace.

Poor Magazine Lays out My position on catastrophic encounters with Law Enforcement:

https://poormagazine.org/node/5510

Read and hear more about Arnaldo:

Miami Herald coverage of Arnaldo's eviction CN: for Ableism

https://www.miamiherald.com/news/local/article236523038.html

Aftereffect: Against the Erasure of Arnaldo Rios Soto

http://theautismwars.blogspot.com/2019/02/affereffect-against-erasure-of-arnaldo.html

Aftereffect: A SWAT team, an autistic man, an American tragedy.

https://www.wnycstudios.org/podcasts/aftereffect

Podcast: Aftereffect — an indictment of America’s disability care

https://www.ft.com/content/b2187ace-8685-11e8-9199-c2a4754b5a0e?segmentid=acee4131-99c2-09d3-a635-873e61754ec6

On catastrophic encounters between disabled youth and men of color with law enforcement specific to Arnaldo’s case:

http://theautismwars.blogspot.com/2016/08/mustafas-dilemma.html

Why Don't You Accept Your Child's Autism? Yes, But....

"Why Don't You ... Yes, But" is a mind game listed in Games People Play: The Psychology of Human Relationships by Eric Bernie, MD. It is a transactional interaction that is in effect an equivocation where one party begins a sentence with "Why don't you____ and the respondent answers "Yes, but....."

Waiting for genuine Autism acceptance is like waiting for Godot. If I shouted "Why don't you accept autism?" into the grand canyon of predominantly white, well-to-do autism parents whose voices dominate this conversation, the echoed response would instead be "Yes, but..."

Book cover for Games People Play the
Basic Handbook of Transactional Analysis,
showing two black chess pieces, a queen an
a pawn in black. The book is red with  the
title and author's name in white lettering.
 lettering. Image credit: Google books

A few months ago I saw a parent who commands quite a following among special needs parents launch into her latest effort to "cure or reduce" her adult son's autism. Her son speaks, but she has ensured he has very little say in the matter of "fixing"  his own state of being. 

Speaking for her son and about him without him, she declares that neurodiversity is a fine thing for other autistics but her son needs the autism "fixed."  I take this to mean, in translation, that how she really feels is that there have always been parts of her son's visible disability she cannot cope with, therefore she despises autism and wants the autism parts "fixed." Her plan in this instance involves resolving his "gut" issues. I read the entire online lament, and shook my head.

This is in part an indication of the failure of Steve Silberman efforts through his book NeuroTribes to actually positively change public perception of autism. The book was not just supposed to make a profit. It was meant to explain the history of autism as a disability, properly define the often misused term neurodiversity, define autism's place in an inclusive society, and highlight how acceptance of that disability opens the door to accommodations and supports that allow autistic people to navigate a more justly designed and therefore more inclusive society.

Because the book is in large part an expansion of his "Geek Syndrome" essay the history told and the characters in those histories are limited to what will enhance the historical narrative for his predominantly white, higher income, target audience. Despite its popularity, with very few exceptions, it failed to connect with that intended target audience beyond parents like the one I've described in the previous paragraph. 

These parents simply misconstrue the terms acceptance and neurodiversity without changing their view of autism as a disability. Upper middle class to wealthy parents continue the same medical model narrative of excluding their autistic loved ones from the neurodivergent label or at best, making a compartmentalized adhoc acceptance of neurodiversity as they redefine it. It is the "neurodiversity is great, but those autistics are..."  the "not like my child," trope's latest variant.

Unaware of their own ableism and fiercely defensive when called out about how ablelist and boundary crossing the broadcasting of a disabled offspring's health concerns or their opinions of how much they choose to accept their offspring are,  they actually believe they understand neurodivergence and acceptance when they clearly do not. There is no qualifier in acceptance of the entirety of a loved one's disability. 

Book cover of NeuroTribes red
and black lettering with the book title
and author's name in read an subtile
except the word Autism in black.
Image of a leafy plant with birds and
butterflies of various colors and varies
on or around it. Image credit Goodreads

Many parents believe that the blame for anxiety disorders should be placed at autism's door. In fact, anxiety develops in part in reaction to parental intolerance of stimming and other self-soothing behaviors whose purpose is to overcome a hostile environment. Stimming is short for self-stimulatory behavior. 

What I find saddest about these parents is that to them the solution is never found in first ensuring that they aren't triggering issues in their own children, everything that goes wrong must be autism. While is it fine to set goals and presume competence, gaslighting your autistic loved one into conforming to a parent's expectation of what would be the most acceptable version of their autistic child for their own lack of embarrassment and comfort levels isn't the point. 

The primary requirement for autism acceptance is not saying things like "I accept my child but I don't accept his autism." Acceptance means the totality of a disability is accepted. Then challenges that are actually the result of the disability can be looked at and solutions can be sought to address these challenges. If a parent said to their child who lost a leg in a car accident that they loved them but not their body with a missing leg, everyone around them would be horrified. But no one makes a sound when a mother laments that neurodiversity is a fine thing but now she needs to continue working on her son's gut problem, which may cure him.

when  I ask, do you accept that your child's neurodivergence is a disability? The answer should never be the equivocation game "Yes, But..."

Did Mr. Silberman's book have a positive impact on its target audience? Look around. Are there any sharp increases in parent allies against ableism understanding the key to lifetime improvements in the quality of life for their autistic offspring requires less time trying to cure their guts and more time fighting for their civil liberties and rights to access and accommodation in society? I'll help you out. No, there are not.

Meanwhile, this particular parent, cheered on by her fanbase and without her adult son's consent, continues her efforts to rid herself of her son's autism which she accepts but doesn't accept, but hey, at least she now uses the word neurodiversity when speaking of how much she hates it.

If that was worth the price of excluding nonwhite and non-cis histories from NeuroTribe's narrative of autism, I hope it was worth it.

References:
Games People Play Explained:
https://www.amazon.com/Games-People-Play-Transactional-Analysis/dp/0345410033
https://en.wikipedia.org/wiki/Games_People_Play_(book)

The Geek Syndrome Article
https://www.wired.com/2001/12/aspergers/

The Problem With NeuroTribes:
http://intersecteddisability.blogspot.com/2016/01/autistic-while-black-erasure-of-blacks.html
http://intersecteddisability.blogspot.com/2016/05/how-not-to-endorse-anthology.html

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.

Resources
=================
On the Right to Community Integration for People with Disabilities 
https://dredf.org/news/publications/disability-rights-law-and-policy/the-right-to-community-integration-for-people-with-disabilities-under-united-states-and-international-law/

The Embezzling Trust Fund Attorney Who Raided a Disabled Young Woman'sTrust Fund
http://www.orlandosentinel.com/news/breaking-news/os-julie-kronhaus-attorney-embezzle-kids-20160129-story.html

Parent built isolated, guarded, institutional mass housing project for high support need autistic adults with medical staff onsite 
https://www.dallasnews.com/business/business/2017/01/04/build-future-son-dallas-couple-plans-12-million-community-young-adults-autism

Google's Driverless Car Test Drive
Self-Driving Car Test: Steve Mahan
https://youtu.be/cdgQpa1pUUE
A First Drive
https://youtu.be/CqSDWoAhvLU

About MedCottages 
In the News
https://youtu.be/5RnY5CSwO9E
Website
https://smallhousebliss.com/2015/11/28/n2care-medcottage/
MedCottage Classic Plans on Sale for $29
https://store9854291.ecwid.com/

Ford's Driverless Cars
http://www.slate.com/blogs/future_tense/2016/08/16/ford_says_it_will_mass_produce_a_driverless_car_by_2021.html

The First Smart Refrigerator
http://www.samsung.com/us/home-appliances/refrigerators/?cid=ppc-

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:

https://www.scientificamerican.com/article/autism-starts-months-before-symptoms-appear-study-shows/

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.

-------------------------------------
References
On New Autism Research
Scientific American 
Autism Starts Months before Symptoms Appear, Study Shows
Flagging children early offers the possibility of more effective treatmenthttps://www.scientificamerican.com/article/autism-starts-months-before-symptoms-appear-study-shows/
NBC News
Study: Detecting Autism May Be Possible Earlier in Child's Life http://www.nbcnews.com/nightly-news/video/study-detecting-autism-may-be-possible-earlier-in-child-s-life-878228035632
On the Shortened Lifespan of Autistic People 
Independent
Why do many autistic people die before the age of 40? http://www.independent.co.uk/life-style/health-and-families/health-news/autism-why-do-many-autistic-people-die-before-the-age-of-40-a6937911.html
On CRISPR and Targeted Genome Editing
New England BioLabs
CRISPR/Cas9 and Targeted Genome Editing: A New Era in Molecular Biology
https://www.neb.com/tools-and-resources/feature-articles/crispr-cas9-and-targeted-genome-editing-a-new-era-in-molecular-biology

Forced Migrations

Highway sign white letters on green field read You are now leaving
Greenbelt with yellow warning sign in yellow with black font
reading Exit Only

I thought I would be fighting the good fight until my autistic son was in an inclusive classroom. I thought I would be in historic Greenbelt, speaking out at the city council meetings, pushing for a better west Greenbelt community. We entertained the possibility of a move to the beautiful new town homes they were building  between the metro station and College Park. Nothing turned out as expected.

 2014 has been a year of failures and disappointments for me. I am exhausted. While efforts to improve a neighborhood on the verge of urban decay for a very long time have seen changes like new management, renovations and better maintenance,  the largest garden style community on the East Coast  is still the rough part of town. The retirees who raised their children there were forced out by 2012. Between 2007 and 2010. crime peaked and a series of fires caused by a combination of faulty wiring and arson burned out legacy residents. Stability has returned but it had come at great cost. My idea of building community ties there just wasn't going to work. Too many residents see west Greenbelt  as a hotel/transient lodging rather than a legitimate part of greater Greenbelt.

Mu with big sister at Greenbelt's Mother and Child Statue

The brand new wheelchair accessible middle school was not where they wanted our son to go. Four years of homeschooling later, no administrative attitudes had changed and the goal was simply to warehouse another nonspeaking autistic student. How would this one be made compliant? What was the risk to everyone else of any given placement? This was the only thing discussed. Under a veneer of feigned interest in our son's individual support needs, the only plan was segregating him away in a closed classroom environment and getting us under the yoke of special education hopelessness as quietly as possible. In the public school administration's view, autism parents, like nonspeaking students, should be compliant.

We are residents of Montgomery County now. I have very mixed emotions about moving. It was something I urged other parents in our former county not to do. At the time I truly believed that someone had to stay and fight for change. But things had reached a critical mass, and my husband realized, as many special needs families do, that migration towards better services is the only way to improve the quality of our children's lives.

Starting over sucks. There is no other way to put this. Moving with a neurodivergent young man is

Art Deco Styled Community Center, Greenbelt 

very stressful. You just don't know how he might react to leaving an area he's known since babyhood. He loved the Art Deco of the historic Greenbelt buildings, the throwback Mayberry RFD feel of the close knit small town in the middle of the beltway rush. It was always like stepping back in time in a good way. The Mother and Child Statue was his favorite place. And he loved the library and the the park in front of it.  I miss things about Greenbelt that are hard to explain if you haven't been there.  The Greenbelt Co-op supermarket and New Deal Cafe are among them.

Mu and I haven't adjusted to the new neighborhood yet. We are strangers in a strange land. So I guess the historic Greenbelt nostalgia comes in part from that. But I'm also confronting a painful reality. Like increasing numbers of autism families we had to try and find some place where his needs would be met without the mountain of negative challenges constantly facing us in our old county. I miss Greenbelt, the New Deal town. I miss the light of understanding of where we were headed dawning on Mu quickly by the familiar turns in the road and the pedestrian crossings to buses,  the old town, the park or mall. I don't miss many more things however. I won't miss the obstinate need to retaliate for our speaking out to help our son, the ableism, in short the autism wars for inclusion. I won't miss the disparity in health care and education given him. I won't miss the presumption of incompetence that seemed standard fare for anyone considered  a foreign or non white parent.

Sign for New Deal Cafe , GreenBelt, MD 

I am taking each day as it comes. We are having a quiet holiday weekend with a convalescent Mu. The new home and neighborhood are lovely. Mu is transitioning well. We are working our way back to routines and the comforting patterns of everyday living.  The sadness of leaving a place I thought we would surely retire in will, in time, dissipate. Our family has become another data bit in the statistic of migrating families trying to make life better for their disabled children. Wish us luck.

More on Greenbelt can be found here

Waiting For Allies Against Ableism

On October 17, 1968,  when I was 7 years old, the world watched the gold, silver, and bronze medalists in the 200 meters receive their medals and saw gold medalist Tommie Smith and bronze medalist John Carlos raise gloved fists in a silent act of protest against the continuing racial discrimination in the United States. Silver medalist Peter Norman joined them in wearing the Olympic Project For Human Rights (OPHR) badge and stood in solidarity with them as they protested, despite being white.  This protest, done to replace an unsuccessful attempt at a complete boycott of the 1968 Olympics by Black athletes, cost all three athletes their medals and their careers. It changed the course of their lives.

Peter Norman went home to Australia to jeers and was never allowed to represent his nation in his sport again. He spent the rest of his life urging other athletes to protest human rights violations in countries hosting the games. Peter Norman was what an ally to a civil rights cause is supposed to be.

Probably the saddest thing for someone of my age, race, and background is to grow up in the times I did, see people like Peter Norman stand with Tommie Smith and John Carlos, then live to compare the way people appropriate, then misrepresent what an ally is today.

I have witnessed the incredible courage of people who didn't have to stand by oppressed and marginalized groups and did so at a tremendous cost. What I see now is a far cry from that.

In the autism community, the word ally is sometimes seen as a feather in one's cap. The word is appropriated by people wanting to have a higher status and influence. They want the label, the photo ops, the awards, and accolades of being an ally. They don't want to put forth the effort or great risk in the name of a cause they believe in. They wear the label, like any other adornment, and show it off to others. They may be kind to those involved in the struggle but kindness is an affectation of patronage rather than heartfelt kindness born of a friendship between equals. Having grasped the label, they don't care at all that their function is to support disabled activists in achieving human rights for themselves and future generations. The label is an item off their checklist to fame.

 Calling a person an ally is a gift of trust bestowed by activists in any cause to those who truly understand their struggle and stand with them. In disability rights activism, that means amplifying the voices of disabled people and presuming they are competent to lead autonomous lives in mainstream communities. The presumption of competence is not just lip service. It must be apparent in an ally's actions and the way they live their lives with and around disabled people. Being an ally is not a label we get to hang on ourselves. It isn't something we earn after a certain time hanging out with disabled people. It isn't something we get for being good parents to our disabled children. We can't buy it by bestowing money on prominent disabled people. That makes us donors,  philanthropists. It does not make us allies.

It takes belief in the cause of another, and unselfish, consistent demonstrations of support based on the belief in the idea that nothing about disabled people should happen without them. For the rest of our lives. We must be willing to step up and pay the cost necessary to stand with our disabled colleagues and our disabled loved ones. This is the only effort that will result in the recognition of our children as equals in society.

That is what I want. I want my son to be accepted, accommodated, supported in our community and every community. This is not a hobby or the honing of a personal brand. It isn't achieved by Instagram-selfies with well known activists or having tea with your federal lawmakers. Those who never toot their own horns, ask "what more can I do", and follow the lead of their disabled colleagues are allies.  Those who don't have the time for the constant updates of their accomplishments on social media because they are backing disabled activists impress me. Can you be invited to speak at any event and arrive, introduce yourself, and give the podium to a disabled activist to speak instead? That is an ally. If people don't know what your name is but your deeds stand out in the successes of your disabled colleagues, you are an ally. Anyone else can be called many things. They can be called benefactors, grantors, donors, friends, online activist parents, bloggers. They can't be called allies.

Maybe at some point, an autistic activist might label you an ally. That is an honor. But it doesn't make you less privileged than neurodivergent people.  Some people who hear that ally label think it means they can then treat disabled people any way they wish. Presumption of competence never means disregard for disability and the accommodations and supports needed to provide equality for a disabled activist to succeed in speaking out. The term "know your privilege" is thrown around too much on the internet. But the position of being a true ally makes that phrase very important. You don't get to silence disabled voices because you are an ally. You don't get to speak for neurodivergent people because you've been labeled an ally by anyone. That isn't the way it works. Getting that label means that even if you don't agree with what a neurodivergent person is saying or how they are delivering that message you must fight for their right to be heard. You must also ensure that you are not discriminating against them or your own loved ones. This meaning you must extend supports and accommodation and use your privilege to let those voices be heard. That was the culture of activism I grew up in.

Where has it gone? I don't see it very much now. I feel as if I'm waiting for Godot.

I have watched this inappropriate behavior. I am truly sad. What I see particularly in the autism community is people conflating being an ally with having power and privilege based on high status within the community. I see them immediately using that privilege to abuse the very disabled people they are supposed to be standing by. The damage that has been done by those who saw being an ally as a medal to be won or a way of gaining insider information to deconstruct disability rights efforts is significant. In a time when people see themselves as brands and carefully Instagram every moment of their own lives, this tendency towards ally label appropriation and misuse is growing. I do not know of any way to counter this avarice for influence and attention. Such a thing may not be possible. But I feel obligated to speak up about it in the hope that once a thing is seen, it can be countered.

The most critical thing a person must know about being an ally is that allies are meant to be the supporting cast. Allies don't dictate, command, take the lead, drive the bus. Allies support. They do what Peter Norman did at the 1968 Olympics and for the rest of his life. Peter Norman did not follow with press conferences and selfies and discuss how those two men were able to protest because he was there or somehow crucial to them doing so. He wanted to support them. He did. He never considered making it about him. This is too rare in allies within the disability rights community. We conflate our status as parents with being allies and tend to want to boss and talk down to disabled activists.  This is wrong. It is ableist. It defeats efforts. It tires me to see this happening.

I wrote and spoke about the topic of allies against ableism as part of a panel organized by Lydia X.Z. Brown you can read  about here. My initial solution to assisting people who want to understand what allies are and be better allies against ableism was to recommend Dr. John Raible's Checklist for Allies Against Racism. This checklist can be used to see if you are truly an ally against ableism by downloading it, modifying it, and testing yourselves.  Replace the word racism with ableism, races with abilities, and the phrase "people of color" with "neurodivergent people". Work on yourselves rather than presuming anything about being an ally. Then truly live as an ally. Do no harm. We are meant to be in the background of our disabled activist colleagues and loved ones and have their backs in this war for their human rights. We must use our privilege to help them reach the goal of justice beyond equality.

If you read all of the above and feel you have done harm, repair it as best you can and don't do it again. Begin again the right way.

Lastly, remember that this is a fragile movement, and egos are a true threat to success. I don't wish to be this disappointed in people anymore. A half-century is a long time to watch people go from Peter Norman to Greek mythology's Narcissus.

Peace

On Boundaries, Privacy, Activism and Family (My Son is Not An Activist)

"When an man lies, he murders a part of the world" 

                                                                       - Merlin

                                                                                                  from the Movie Excalibur

Something negative has been floating around awhile now. A festering, pustulant bit of gossip that finally spewed out into the open during an advocacy related phone conversation I was having last month. I'd heard hints about it, but it had never been said to my face. The person on the phone decided to blurt it out."...since you are shut in, you know a recluse...I mean you only want to meet on the phone." Out it oozed all over the Verizon fiber optic cables. The person continued speaking but I was stuck in that moment.

Don't presume to call me a shut in because I think my son is a higher priority than your personal convenience or organizational agenda. That nasty little attempt at needling me into reacting to prove I was not whatever negative adjective was being ascribed to me shut down any further volunteer efforts from me for that individual. But it also highlighted something I've needed to say for a very long time.

Let me be clear. In the hierarchy of priorities my neurodivergent son comes before any legislative advocacy. He comes before any nonprofit organization. He comes before meeting the President of the United States. If I need to be somewhere and Mu isn't feeling it I reschedule. I will not drag him to any protest, rally, workshop, meeting he doesn't wish to go to. Nor do I expect him to sit through some activity he doesn't want to sit through. I only have so much life left and the lion's share of the time I have belongs to my autistic son, his father, and his sister. My husband and I made a joint decision at very high cost to ourselves that I would cease working when we realized Mu's sleep cycle and school troubles were not going to simply end. What is more important is something I suspected but now know for certain: Mustafa is not interested in activism.  Knowing that, I have spent the past three months in particular changing what he does  and scheduling things related to activism based on his indications of what he wants to do. Because he wants to have an autonomous life, and his life should not involve being forced to be a sidekick in my activism.

Mu in his 'fro phase with his favorite t-shirt at his computer
in our old house. the shirt is white with the words "Stand Against
Restraints and Seclusion by Teachers" t-shirt by autistic
activist Lydia Brown. Photo ©Kerima Cevik

See my life in advocacy is and was always meant to be an ally's life. I was meant to be my son's sidekick. That concept expanded when I realized the only true way of making my son's life better was to make life better for all of his peers as well. So when a member of Mu's neurotribe speaks, I shut up. If I want to say something and a neurodivergent person has already said it I amplify and signal boost, step out of the spotlight and work to place the light on them. My activism is not for self promotion. It is for Mu. So if he doesn't want to go to D.C./Annapolis/ Baltimore/UMD, or wherever, people and the organizations they represent either Skype a meeting, call me or do without me. That is the way it is. Anyone wanting any contribution from me should respect that boundary. Once crossed I will shut them down and drop them like a bad habit. That applies regardless of their station in life or how famous they are.

On gossip. We are all too old for this. When someone gossips consider two things that we were all taught as children. First consider that if that person is saying something nasty about me, they will also say something nasty about you the minute your back is turned. Second, a bit of gossip is a thing that functions very much as it does in the children's game "gossip". It gets more inaccurate each time it is repeated. So not repeating negative things helps eradicate an insidious ever expanding lie that is a threat to unity in activist communities. I am not sure why how I live my life is of any concern to anyone. I am a bit shocked that others would see this as an important enough topic to use it to disparage me. I guess I need to remind them that I am simply a parent, activist and blogger. And if they miss the point that this is about the human rights of our children, and not about me, let me hammer that home.

I am part of  the true Autism Wars, a larger series of wars for the human rights of our children.  These battles are being waged for equality expressed in acceptance, representation, and full inclusion in society through accommodation and supports for neurodivergent people throughout their lives. I want to see the day when the standard for educating all children is true inclusion regardless of degree of disability, support and accommodation needs. I want to see the day when my son's divergence doesn't matter.That is what this is about and what I am about as an activist. My son is important. My sitting on a board of directors is not. My son's peers are important. My speaking to adoring crowds is not. Those activists who fight for their neurotribe members matter. My job is not to photo op with them it is to have their backs. I don't keep track of what I do. I don't have someone who chronicles the speeches, good deeds, printed words and further charities of Kerima. So I'm not certain I'll be invited to speak at your next conference. If you get that about me, we'll get along fine.

I also need to remind people that activism can easily consume a person's life. I cannot allow it to do so to mine, because that would steal my son's birthright to his mother's time to love and support him. I must always fulfill my obligations as a wife and mother and friend first. If you didn't get all that let me sum up. 1. My son comes first. Respect that or don't engage me. 2. He is the reason I blog and I am an activist. 3. Trash me to hell and back it only diminishes you. 4. If I have an obligation, event, or commitment and my son has an issue I don't go. We have learned to be flexible because our son has multiple disabilities and if he is reticent to go it means he's trying to tell us he's not feeling well or something is amiss. 5. It doesn't become us to propagate gossip or make presumptions about others. We need every member of this community to work together and this behavior is deceitful and destructive.

Based on years of attempting to work with organizations who don't respect what I'm about, and who my son and I are, I am seriously considering stepping back further.

Peace.

7-year-old Autistic Boy Found Dead in Creek - WAFB Channel 9, Baton Rouge, LA |

7-year-old boy with autism found dead in creek - WAFB Channel 9, Baton Rouge, LA Today my heart broke for a family I’ll probably never meet, over a child who could have been my son. I learned that, John Burton Jr., age 7, autistic, drowned in a creek near his new home. He was not familiar with his new neighborhood. His dog was unable to keep him from drowning.
This news triggered thoughts of February 27, 2009. The day the principal of my then 7-year-old son’s full special education school called to say the school had “lost” my son.

“This is bad”, she said. “This is very, very bad”. And in those few frightening hours, I learned things that would change me for the rest of his life and ours. He was supposed to have been in the care of a paraprofessional in plain view of 6 adults but somehow he disappeared. Could this be true? Had he overcome his fear of the dark miraculously acquired the OT skills to break safety latches and automatically locking doors when he was incapable of holding a pencil without support, and decided to make a jailbreak, running from the most restricted educational environment available in the public school system? Had my brave, nonspeaking, chubby little guy taken flight in bare feet, coatless in the chilling February winds? We learned that what we were initially told about what happened that day was completely untrue. Something more horrible had happened. But our story has a less tragic ending. A stranger found him, wet and muddy, but alive, and brought him back to us.

I have been homeschooling my son ever since. The most important segment of his physical education program is the swimming program. Not the water therapy he was getting in his special education school, but real swimming lessons, with dedicated instructors and his parents attending him. We will never know what happened that day unless our son should learn to type and tell us. But we realized our son needed to learn some life saving skills. We urge all parents and care providers of autistic children and adults, particularly nonspeaking ones, to find someone able to teach your children/ adults to swim. All children, autistic or not, will always be very attracted to water. Teaching children to survive in the water might save their lives even when a faithful dog cannot. Think your child or adult carries too "severe" a function label to learn to survive in the water? Anyone can be taught water survival, even if they can't swim. This video gives a brief introduction of a swim to survive program, one that all special needs families should have available here in the U.S. but we don't: 

Read about what the Dan Marino Foundation is doing to save lives by training people to teach neurodivergent youth to swim. http://www.danmarinofoundation.org/aquatics

I hope that families try their best to plan for events like moves from one home to another. Prepare your nonspeaking child's bedroom first; then sacrifice unpacking time to teach your child how to be safe in his/her new place. Marco Polo your offspring and keep them engaged and within view until the move in is at a stage where your child won't get lost in the confusion of movers and friends trying to place large items in the new home. Preparation could save your loved one's life.

I am not assigning blame to the family at all. Sometimes every precaution can be taken and things can still go very wrong. I send my deepest condolences to the Burton family. But for the grace of God, any one of us could be in the Burton family's position. The only thing we can do as care providers is plan, accommodate, and educate our loved ones.

Peace