Sunday, October 29, 2017

The Ripple Effect

Bus attendant helps our son from his chair onto the school bus in PG County, spring of 2008 Photo @Kerima Cevik. 
There is a pattern of behavior based on the
guilty need parents have to try and get the best educational and therapeutic circumstances for their autistic children.  I hope to completely eliminate that pattern of behavior in all of us by making it public so any parent who has been advised to do this in the past can stop doing this now.

This pattern of behavior begins a ripple effect of harm that stays with our children and expands outward harming countless other autistic children along the way until something so drastic happens that things are forced to change too late to save the destroyed lives of all children in those expanding rings of abuse and cover-ups.

 What I mean is the act of repeatedly trading complicity by silence for some perceived advantage for your own disabled children. This major lapse in ethics to meet the needs of one at the expense of many especially angers me because my son was one of many other victims caught in the riptide of one of these ripple effect disasters.

The actions of two autism parents had a big part in destroying my son's public school life and his trust in nearly anyone who resembles the staff who harmed him or stood by while he was being harmed.

In the wake of the Weinstein scandal and the resurgence of the #MeToo hashtag created by Tarana Burke, a global conversation about sexual harassment has begun and I have been asking myself why autism parents aren't speaking out about the harm done to our children in schools and other settings meant to be safe spaces for them.

Something Anthony Bourdain said in an interview put my scattered thoughts and feelings about parental complicity by silence into language my own emotional reaction to what my son had experienced was not allowing me to write as clearly. He was discussing an ethical judgment call on an offer from a group that was led by an individual with a horrible reputation, and used it to call out Quentin Tarantino for his complicity in the Weinstein scandal :

"[Taking the offer] would have destroyed everything—everything that makes us good, everything that makes us happy, our quality of life. It would have been a lethal compromise, a slow-acting poison that would have nibbled away at our souls until we ended up like Quentin Tarantino, looking back at a life of complicity, shame, and compromise."  - Anthony Bourdain

Whenever I wonder whether I should have taken such offers at the expense of my silence or  turning away while harm came to others like my son, I remember the guilt ridden mother of a nonspeaking  Autistic daughter who called me because she made such a deal after her daughter was abused at school only to find out two years later while autism moms were gossiping during an event at the Arc of PG County that the next nonspeaking autistic child harmed by the abusers of her daughter was my son.

Through bitter tears she talked about having to watch one of her child's abusers receive an award for their service to disabled children. She said she was braver now, she would never have let herself be bullied now, she needed my forgiveness for her silence.

I told her to speak out now. To make things right now. So other children would not be hurt.

She quickly answered she couldn't risk her children's placements in the prime schools paid for by her silence. She couldn't risk her good standing with the school administration and the community. Her husband had heart problems. On and on.

A few days later, the mother of one of my son's classmates called to tell me that she lied to the IEP team during her meeting because they refused to give her son the inclusion time she wanted. She told them that I was building a class action suit against the school and if they didn't give her son the things she wanted she would join it. The team placated her, telling her they would give her son what she wanted. They then proceeded not to do so. She didn't call to apologize. She called furious that her lie was not effective and hoping to get something from me she could use to pressure them further. This explained the recent sharp increase in the belligerence of the school and why my son had been targeted. This was why he was continuing to come home with bruises and hungry because they were not feeding him the lunches we were buying for him. The woman's excuse was that her son was higher functioning than mine so inclusion would not benefit our child anyway. I felt bile rising in my throat and hung up. Two weeks later I heard she moved to another county where the schools were all inclusive model based.

Dear fellow parents,

 Each time a school or respite center or camp abuses your autistic loved one and buys your silence by giving your abused child a better placement or more respite or free extra camp aides you are not only complicit in the harm done to your child by not seeking justice for the abuse they suffered but you are directly complicit in the harm done to every disabled child that falls into the hands of said abuser(s) every day you remain silent and 'move on. '

It is never too late for justice. Speak publicly about these people and what they have done. Stop using the suffering of your own children as a bargaining chip to some educational lottery win that depends on your silence.   Your continued silence causes the needless suffering of countless other innocent disabled children.

My son is one of them.

Take the antidote to the slow poisoning of your souls your complicit silence creates. Speak up. Name names.  Save everyone's children and show your autistic children they matter.

Don't throw your children under the bus so you can feel better about something you got as a result.

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