Friday, October 6, 2017

#AutisticWhileBlack: I'm Sorry Antonio

I'm Sorry Antonio,
This is the beautiful Antonio DiStasio, autistic and black, age 4, smiling in a
car seat wearing a black coat with yellow and gray reflective block printing.
He was murdered by his mother, who bound him and burned him alive in a bathtub.
Image credit: GoFundMe page
I've been on a news media diet, trying to care for my own nonspeaking autistic teenaged son, so I didn't hear about the horror of the torturous painful death you went through until last night. One of my favorite friends and colleagues told me, during a private conversation. He realized that I could not possibly know. He couldn't speak about it. He just posted a link to the news story, and when I saw it a sound came from my throat that I cannot explain, except that it was so painful that my son cried out from his room and my husband ran to my side, thinking I'd had another cardiac arrest. I was unable to make a sound after that sound. I simply handed him my cell phone and he made that sound, that sound of despair beyond hopelessness, and then he shook me because we silently agreed we wouldn't, couldn't tell our son what had been done to a preschool-aged autistic child by his own mother.

I am so very sorry that your neighbors heard you begging your mother to stop, telling her you wouldn't do again whatever infraction she was unjustly blaming you for and never thought to call law enforcement or child protective services. They never thought to bang on the door and demand to make certain you were okay. Your blood is on their hands, and yet, clueless, thoughtless, they line up like gleeful viewers at the latest horror movie, blithely relating to the press what they heard and did nothing about.

I am mourning your short, painful life. But I am so angry Antonio. I'm so angry.  I'm angry with  your grandfather who had the nerve to say your mother had mental health problems and he hoped she would get the help she needed now.  I am angry because this means he knew your mother needed help and yet did nothing to take responsibility for his own grandson.

Though he may be mourning you, I feel your blood is on his hands too.  I know of grandparents whose children battled poverty and drug addiction who stepped up and took responsibility for their grandchildren.

Was there no family member among those who are preparing to bury you who could have saved your life instead?

I am sorry for the culture that some in our autism community perpetuate, this disgusting idea that somehow it is understandable to brutalize and murder autistic offspring because they are autistic, and somehow that presumes that raising the child is hard when perhaps the issue is parents who have not sought proper professional help for themselves and their families.

 I am sorry for the thousands of online groups of self-pitying adults who call violent torture and murder understandable and equate violent murder with gently sending their autistic little angels to heaven.

I'm sorry for their lack of respect for your worth as a human being. I am sorry they do not understand, that this moment, this instant of staring into the soul of our community and seeing an evil that must be rooted out is not about them, their parenting struggles, or their demands for more respite and more services.

I'm sorry that spaces exist where parents whisper about harming their children and feed off one another's unacceptably negative depressive views until a vulnerable parent like your mom comes along and believes you are something evil when you're not. I'm sorry about everyone who will use your death to push for less civil rights for autistic people in the name of "protecting" others like you, my son, my friends and colleagues.

I am so very sorry, Antonio.

But I'm here now. I won't let people forget you. I'll keep trying until every stakeholder in the autism conversation joins autistic activists and disability rights organizations in our fight to make this filicide nightmare end.

--------------------------------
In loving memory of Antonio DiStasio, age 4, who I will never meet, and who didn't have to die

Resources:
The horrible death of Antonio DiStasio
http://www.jsonline.com/story/news/crime/2017/10/04/milwaukee-family-prepares-bury-4-year-old-boy-mom-jailed-awaiting-charges/723315001/
Need help? DON'T KILL YOUR AUTISTIC CHILDREN!
Save Lives Reference list
http://theautismwars.blogspot.com/p/mourn-dead.html


Wednesday, September 20, 2017

Facebook Notes: Everyday Ableism

Image of Mu, a Hispanic presenting biracial four-year-old male
in a blue hooded coat sitting in a special needs stroller Credit Kerima Cevik
When Mu was very young, we used to make these contrarian decisions on occasion just to fight the power. One of those decisions used to entail going out to family brunch on Sundays to places where people my color married to people Nuri’s color and producing offspring with our son's biracial identity and degree of disability were not welcome.
I sometimes don’t know what we were thinking, other than the fact that in this day and age, we should have a right to eat where ever we wanted.

So it was that we found ourselves at a particular location of Atlanta Bread Company on a Sunday for brunch, and Mu was about the age he was in the featured photo above. During these outings, the goal was never to stay longer than he could tolerate. If I saw the early signs that he was not going to take anymore we had a protocol, and that was Nuri paid the bill and packaged uneaten meals while I got him back in his wheels and he and I rolled out of the restaurant and into fresh air asap.

We usually gave him about 10 minutes before his tolerance was up. 15 minutes if the food came out quickly and there were no loud machines or blaring music. 

I settled him out of his special needs stroller and helped him prop comfortably in the booth next to me. He was sitting, standing, stimming, vocalizing happily and basically being autistic. We gave our order, Nuri asking for Mu’s food to be brought immediately and spoke quietly, being ready to grab for Mu quickly if he tried to lean over too far or otherwise engage in acrobatics. This was a carefully orchestrated dance of movement, stimming, and conversation, punctuated with occasional parental rescue lunges and replacing Mu in his seat or helping him eat his brunch as it came to our table.

While we were eating on this day, we were subjected of course to gaping stares, particularly from one stylishly dressed elderly white female in makeup that she wasn’t aware settled in the creases and lines of her face. She was eating with her husband and another couple directly forward and to the left of our booth. I deliberately ignored her until Mu had reached his tolerance limit. I quickly lifted him into his stroller and only then realized she was determined to block Mu’s stroller from exiting by pushing her chair in our path. 

“You know, our daughter has one of those,” she said to me. “Excuse me?” “How do you mean?” I answered. “One of those.” “Like your son.” “A (insert r-word) kid.” “Did you know there is a place called the Arc where you can leave him so you don’t bring him here?” “He’s better off there with his kind.” There was a collective intake of breath in the restaurant. You could hear a pin drop. 

I smiled at her, a smile our daughter tells me is terrifying, deliberately pushing Mu’s chair closer. He became more agitated and threw a sharp vocalization at her making her flinch.“I know the Arc very well.” “Do you want to know what they told me about my son?” I answered loudly enough for the whole restaurant to hear while retrieving his favorite stim toy from his backpack and handing it to him to calm him. 

“Sure.” she replied.
“The Arc said to take him out in his community, everywhere, all the time.”

I held my head up in righteous indignation and Nuri suddenly stood beside me looking down at her and said: “is everything alright here honey?” We both stared her down and red-faced, she was forced to move her chair forward. Several other diners, embarrassed, moved chairs and tables to allow me to wheel Mu out of there. Two people came up to us on our way out to apologize for the woman’s behavior. A waiter apologized and held the door open for us. Nuri waited for his credit card and joined us outside.

Once we were on the tree-lined walk home, Mu immediately calmed down. Nuri took over the job of pushing the stroller. It was a beautiful day for a leisurely stroll outside. After about five minutes we looked at one another and burst out laughing.

I leaned over and lightly ruffled Mu’s hair. “Well done, Mustafa,” I whispered to him. 

This isn’t an unusual event. It just ended well. It happens so frequently that sometimes I forget it isn’t right nor it is the way other families have to live.

We are fortunate enough to love one another and see the bad attitudes of others towards our marriage and our son as their problem rather than blame him or his neurology for their discomfort. He is a long way from the wiggly child he was at restaurants now. But his disability is apparent, and we still get the gaping stares, the blatant ableism, additional racist comments, and the attitude.

I don’t enjoy staring down ableist old white ladies who despise their own grandchildren.

But then again, no one is going to denigrate our son or her grandson for that matter. 

This is the job of being parents.  This is also my job as an activist. 

These are the people and the mentality we are trying to counter. It is a hell of a job, but somebody’s got to do it.

To all Autism families. It isn't their neurology's fault. The fault is in generations of people who weren't brought up to know that different doesn't mean undesirable or less. It just means different.

Onward, to battling the injustice in a world where our children do belong, to give them their rightful place in society.

Friday, August 11, 2017

How My Nonspeaking Autistic Son Taught Me YouTube Speak

Image of Mu,  a Hispanic presenting biracial male in profile with cropped curly dark hair and striped t-shirt, image posted
with permission of the subject. ©Kerima Çevik
Last Saturday morning, my husband witnessed his son's newest AAC language innovation in action live and in person. It happened like this.

Mu walked into the kitchen and seeing all the activity, hesitated.
Me: "Hey Son! I thought I'd make pancakes and your Dad thought it would good if he helped. How do you feel about pancakes?"
Mu swiped his iPad mini, gave it two quick taps, and we all heard: "It's all you can eat pancake time at IHOP!" Then he tapped the video to pause, smiled and wandered in to see the state of the pancakes on the griddle.

His father tried to contain his emotions until Mu, satisfied that breakfast was going to be awesome, wandered back upstairs. "Oh my..." his father started when I cut him off "right?!?" I shouted in response. "Told you!"

Mu has been teaching me to communicate with him through what I call YouTube speak for about a year. He has memorized scripts from hundreds of YouTube videos in more than one language. Now, when he has a script for something, rather than going to his stilted speech app, he swipes, taps, and if I'm seeming particularly clueless, literally puts the iPad or iPad mini in my face so I can get a moving visual, points, taps, and glares. A typical exchange goes like this:

Me: Mu, let's get through your grooming this morning. Deodorant?
Mu grabs iPad, swipes, swipes, taps twice: "Hello ladies, look at your man..."
Me: Right. You are usings Tom's of Maine actually, but you understood what I meant. Let's go get that deodorant...

Me: What do you want for lunch Mu?
Mu grabs iPad mini, swipes, taps, taps: "Barilla presents, Spaghetti Marinara on the couch..."


Me: Son, your room is a mess!
Mu looks up from iPad, swipes taps, taps: "I came in under the assumption that it was clean. I've been living in a fool's paradise!"

Our arguments now include lines from whatever YouTube video he feels is appropriate. We had an entire verbal/gestural/YouTube discussion on his demand I prepare him pizza cake. He used this video to argue his case tap here.
The infamous pizza cake, Yes the image is of 7 layers of pepperoni pizza in the shape of a cake.

I don't know where or how to incorporate these scripts, but I began to write them down so he understands exactly what I mean when I speak to him by using the script he has for any topic I have heard him use a YouTube script for in the past.

The thing about this entire process is that my son, who is medically considered too disabled to communicate beyond the level of a 6-month-old infant, has amassed this library of scripts from YouTube programs, music, commercials, and public service announcements in his own mind, and is now using them appropriately.

We parents are being told so much what our autistic offspring can't do, what is and isn't a waste of time for them. If we express any dissent, we are quickly silenced with gaslighting expert answers for every sign that there might be more going on with our loved ones than most experts are able to access. All autistic teens are not the same. In fact, no autistic teen is like another. So it is tough for me to generalize and now say this will work for every nonspeaking autistic teen out there. But I do know that had I gone the usual route I would have browbeaten my son out of finding this new path to reach us by now.

 We aren't told to step back and observe loved ones we are told in the strongest terms to invasively work with them or what little function they have may never manifest. The process was miserable for him and for us.

I learned my son was a master of YouTube speak when his father was on the way home one day. As always, when his father called the house I put the phone on speaker, and his father, after asking me if we needed anything he could pick up on his way home said, "Hello Mustafa. Can I take your order?" But this day, Mu suddenly tried to vocalize into the phone and when that failed, he tapped on his iPad and played a McDonald's commercial. When his Dad couldn't hear clearly and I said: "I guess Mu wants a hamburger or something from McDonald's?" Mu was so happy he hugged me. He went on to replay the ad until he was certain we understood what he wanted.

He is self-generating conversation scripts.
He is keeping a mental inventory of hundreds of videos to use for conversation when AAC isn't enough.
He is doing all this independently.

The diagnosed catastrophically intellectually disabled nonverbal autistic is using technology in his own unique way to communicate.

When he thinks I'm in pain, Mu plays "It's Raining Tacos." It took me awhile to realize he was playing the song to ease my pain and not only because it made him happy.

Our current running YouTube speak argument is centered around his insisting he's confident that I can produce a life-sized Darth Vader cake.  After a firm no, he moved on to a variety of offerings from a particular episode of Outrageous Wedding Cakes.

Really dude?

Hang in there, parents. Don't give up. Don't assume your offspring are simply vegetating. Everything, everything they are trying to do is an attempt to communicate with you. There is a great deal more going on than you have been told to by experts to believe.

Presume Competence.
Peace.


YouTube content used for scripts cited in this blog post:

IHOP
https://www.youtube.com/watch?v=QCYO3haHIEU

Old Spice
https://youtu.be/owGykVbfgUE

Barilla
https://www.youtube.com/watch?v=m2wE1_4OpbQ

Swifter 
https://www.youtube.com/watch?v=aeqKDKJCd98

YoYoMax 12, Pizza Cake
https://youtu.be/W8r8IxbQMjA

It's Raining Tacos
https://www.youtube.com/watch?v=npjF032TDDQ

Saturday, July 29, 2017

Confessions of a Retired Human Roadrunner

Mu with AAC looking at a rainy sunrise. Image of a teen in a hooded raincoat, his brown hand holding an iPad mini bare trees mixed with evergreens white houses and a pastel sunrise in the background. ©Kerima Cevik

My husband, Mu’s father, by all accounts, was an angelic, friendly, impeccably behaved child. Then there’s me. If you want to know where Mu gets the hurling of his 200 lbs upward and spinning in mid air, that would be from me.

When I was young, like Mu, the adjective most frequently used to describe me was “exhausting.” My mother took me in to be assessed in the hope that I could be put on Ritalin in order to slow my speed down to the legal US highway limit.  What she was told was I was extremely bright and should be challenged in school so as not to bore me. Disappointed (and remember, exhausted) my mother took to beating me until I slowed to what she considered a compromise speed. In the end, too tired to chase me, she’d send my sister after me each day around dinner time.

So briefly, our son organizes his brain by movement. It seems to help his vestibular system and his focus. When he is running, jumping, spinning, that means he's happy and engaging his brain. After such activity, he focuses, studies, and processes a prodigious amount of information.

When I say he's a human roadrunner I am not saying he’s a burden. I’m saying he’s his mother’s son. When he stops moving, sits meekly, and quietly complies with every request it's time to call an ambulance because that means he's ill and it's an emergency.

A typical day at home involves a great deal of movement followed by periods of learning, studying and leisure time. I am in terrible shape but he puts me in the position of having to get in shape and this is an incredibly good thing, particularly since I’m trying to recover from a great deal of health harm. At some point I won't be limping after him, I'll be able to catch him at a flat run. That will mean I'm Senior Olympics material. That’s a good goal, and everyone needs a goal in life.

What does happen each time I see a carpet slide, or leap or spin, is I remember standing under street lamps as a young child in the Canal Zone, spinning on one foot endlessly before I knew what a Dervish was and before I saw my first ballerina en pointe. I remember and as he runs through his impromptu acrobatics I throw my head back and laugh in understanding and memory of the sheer joy in it!

In those moments of silent explosive movement, I think “that’s my boy.”

Don't fool yourselves. As Yoda would say, "Autistic he is. A burden he is not."


----------------------------
Facebook Notes, Picture published with permission of the subject

Sunday, July 9, 2017

#AutisticWhileBlack: Saving Mr. Reginald Cornelius Neli Latson

Image of a framed photo of handsome young African-American Autistic male in a white t-shirt and plaid shirt, smiling at
the camera. the photo is cradled in the hands of his mother. Photo of Neli Latson, credit Washington Post
Some Autism organizations have gained mileage, prestige, status, and accolades from the suffering of young Mr. Reginald Cornelius 'Neli' Latson. Although I silently witnessed a great many self-congratulatory pats on one another's backs in the aftermath of Governor Terry McAuliffe's conditional pardon,  I continue to remind myself each day that while everyone else has moved on to the next national headline, Neli Latson is in the mental health institutional equivalent of a prison, a particular institution with a long history of abuse without proper accountability when he should never have been placed in any prison at all.

We, the community who should be following up his case, who should be demanding a less restrictive environment and pushing for a plan of Trauma Informed Care, have benefitted from his tragedy, abandoned him to his fate, and moved on.

It is only a cruel twist of fate that Arnaldo Rios Soto, whose only misfortune was being the witness to the police shooting his trusted support staff member while that Black professional lay flat on the ground with his hands up, is also now housed in the same inappropriate facility in Florida. Are the only autistic lives that matter those that make the evening news?

If Neli was your son, would you forget him in some psychiatric hell hole after he suffered years of being restrained, pepper sprayed, shot with a Taser, bound in a restraint chair for hours, placed in solitary confinement, and criminalized all for having a mental health crisis during a catastrophic encounter with a police officer.?

The truth of the matter is particularly now, with an Attorney General more interested in reversing the previous administration's criminal justice efforts than taking any human rights violation cases to trial, any autistic child, teen or adult, can end up in Neli's situation, regardless of race. It may happen more frequently to nonwhite families, but these injustices will surely arrive at every home. Like Edgar Allen Poe's Red Death, this type of injustice eventually comes for all.

Do you wish to save Neli Latson? Imagine he's your son and make him matter! Ask Autism and disability organizations why they have not followed up on his case. Ask if Neli is being treated for the trauma induced by putting him in solitary confinement, an act that is considered a form a torture and causes permanent harm to especially the brains of children and teenagers. Demand that organizations follow up on all cases like Neli's and give members updates on whether Trauma Informed Care is part of a recovery plan for Neli, Arnaldo, and others like them. Lobby for Trauma Informed Care to be the standard of care in every institutional setting and group home in your state.

Our community organizations should be following up on every case like Neli's. If they aren't, how can they say they are advocating for our children?

What is Trauma Informed Care?
Per Kenneth Huckshorn and JaniceLebel, "Trauma informed care is grounded in and directed by a thorough understanding of the neurological, biological, psychological, and social effects of trauma and the prevalence of these experiences in persons who seek and receive mental health service."  I first heard of this from an activist friend and colleague, Savannah Nicole Logsdon-Breakstone, who blogs on MH, DD, ASD, and Disability Advocacy on Crack Mirror In Shalott. Savannah also referred me to her mother, who trained in Trauma Informed Care. TIC is something everyone in the Autism community should know about and champion. Here is a short introduction, quoting Alameda County's Trauma Specific Interventions page:

Trauma informed care is about creating a culture built on six core principles:
1. Trauma Understanding: through knowledge and understanding trauma and stress we can act compassionately and take well-informed steps towards wellness.
2. Safety & Security: increasing stability in our daily lives and having core physical and emotional safety needs met can minimize our stress reactions and allow us to focus our resources on wellness.
3. Cultural Humility & Responsiveness – when we are open to understanding cultural differences and respond to them sensitively, we make each other feel understood and wellness is enhanced.
4. Compassion & Dependability – when we experience compassionate and dependable relationships, we re-establish trusting connections with others that fosters mutual wellness.
5. Collaboration& Empowerment – when we are prepared for and given real opportunities to make choices for ourselves and our care, we feel empowered and can promote our own wellness.
6. Resilience & Recovery – when we focus on our strengths and clear steps we can take toward wellness, we are more likely to be resilient and recover.
Our community does not have Trauma informed care models specifically for trauma commonly suffered by autistic children and adults. No one has developed one specifically for autistics and the tragedy of this is the lack of said models result in institutional settings like the Judge Rotenberg Center further traumatizing autistic youth they are supposed to be helping.  The difference between having Trauma informed care systems and not having them, again from Alameda County's excellent page on this:



Systems without Trauma Sensitivity

Misuse or overuse displays of power – keys, security, etc.
Higher rates of staff turnover and low morale
Disempowering and devaluing consumers
Consumers are labeled and pathologized
Focused on what’s wrong with you

Systems with Trauma Informed Care

Recognition that coercive interventions cause trauma and re-traumatization
Awareness/training on re-traumatization and vicarious trauma
Value consumer voice in all aspects of care
All inclusive of survivor’s perspective and recognition of person as a whole
Focus on what has happened to you

The supposed goal of any mental institution is healing. If a place like the JRC and Neli's present placement in an AdvoServ facility are using methods that are effective, then those housed there would improve, and there would be a constant movement to less restrictive environments. This is not the case, and client abuse, high staff turnover, and patients housed for years with no improvement are the reality. So something is not working, and that means better, more humane, more inclusive methods of healing trauma must happen.

Please speak up and step up. Start emailing and calling organizations and reaching out to Neli's family. Don't forget him because the media has and he is now used as a symbolic object to show proof of success in advocacy.

I haven't.

Save Mr. Reginald Corneliaus Neli Latson, #AutisticWhileBlack.  #FreeNeli. Give him back what quality of life he has left.

He could be your son.

==================
Resources
The Story of Neli Latson:
https://www.washingtonpost.com/opinions/ruth-marcus-in-virginia-a-cruel-and-unusual-punishment-for-autism/2014/11/14/9d7f6108-6c3b-11e4-b053-65cea7903f2e_story.html?utm_term=.fdda40a8442e
http://intersecteddisability.blogspot.com/2014/11/making-neli-latson-matter-invisible.html
http://intersecteddisability.blogspot.com/2014/12/on-ruth-marcuss-latest-op-ed-on-neli.html
https://storify.com/kerima_cevik/freeneli-1
https://www.change.org/p/terry-mcauliffe-grant-a-pardon-to-reginald-cornelius-neli-latson

On the horrors of Solitary Confinement:
https://www.theatlantic.com/health/archive/2014/06/how-solitary-confinement-hurts-the-teenage-brain/373002/
http://serendip.brynmawr.edu/exchange/serendipupdate/lonely-madness-effects-solitary-confinement-and-social-isolation-mental-and-emotional
http://www.newyorker.com/magazine/2009/03/30/hellhole
https://psychcentral.com/blog/archives/2016/06/29/solitary-confinement-crushes-any-chance-of-true-recovery/
http://www.pbs.org/wgbh/frontline/article/what-does-solitary-confinement-do-to-your-mind/
http://repository.law.umich.edu/cgi/viewcontent.cgi?article=1035&context=mjlr

Unjust Incarceration and Solitary Confinement While Black:
On Trauma Informed Care:

Savannah Logsdon-Breakstone's Blog

On Abusive Institutional Methods - The Judge Rotenberg Center

Via Shain Neumeier, esq & AutisticHoya
S.Neumeier via ASAN:
S. Neumeier
S. Neumeier
For Your Own Good: Coercive Care In the Lives of Marginalized People
AutisticHoya
NBC News

On Abuses In AdvoServ Centers in Florida and Maryland

Monday, July 3, 2017

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



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.

Resources
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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-