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

On Digital Exhibitionism By Autism Parents: Why Parents Live Tweeting Their Disabled Children's Worst Moments Is Red Flag That Should Concern Everyone

Giving autism parents a bad name:  Jason & Kate Wells
credit Twitter

The Internet age has given rise to a dangerous type of exhibitionism among people in general and people who need parenting courses in particular. This becomes dangerous when the pathological demand for public attention places a child at risk. There is a pattern I have observed among autism parents who later do harm to their children. This is how the pattern plays out.

1. The parents spend over 60% of their days generating written content that disparages their child and presents themselves as martyrs for having to parent divergent children.

Isabelle "Issy" Stapleton credit Facebook

2. The parents escalate to posting videos of their children at moments of crises in order to support their case that the child is at fault for the failed lives of their parents. No one questions whether the parents induce crisis in order to record content that can be publicly shared.

3. The parents are successful in gaining either local or national media attention, thereby rewarding the production of content damaging to a disabled child that will remain on the internet forever.

4. The parents crowdfund for assistance from the community based upon the negative content produced about their children.

5. The parents attempt to murder their children.

6. The parents are defended by others for attempting to murder or murdering their children because prior negative content showing their disabled child at a moment of crisis is used as an excuse.

While all this is happening no one seems to ask:

How have the parents the time to videotape a moment when they should be keeping their children from harm to themselves and others?

How have the parents the time to constantly broadcast negative content when parenting the victimized child is such a tremendous challenge?

Alex Spourdalakis surrounded by funeral flowers

Why any parent in good conscience can believe it is okay to broadcast the worst moments their children experience to a global audience?

Why aren't the parents seeking mental health support for themselves if they have entered a state of depression so extreme that all content they produce about their own children is negative?

For those readers born before the internet and social media, imagine what it would be like to have your worst, most humiliating childhood moments broadcast forever to anyone who chose to view it. There was a period when there were no rules to social networking, and parents would demand to be added to adult children's accounts only to post embarrassing and on occasion, humiliating photos of their own children publicly to be viewed by the person's colleagues, peers, and complete strangers.  It took time for rules to appear that warned parents that the internet is a public broadcasting method and content posted on it can become viral and magnify harm done regardless of intent.

I am tired of this pattern of self-serving exposure at the expense of one's neurodivergent children and frightened of its consequences. Do we believe this is not a problem? Examples of parents who followed this behavioral pattern:

Issy Stapleton's mother, whose blog about her was named The Status Woe,  and who drugged her, left her in a car and tried to poison her with smoke from barbecue grills.

Alex Spourdalakis' mother and godmother, who after massive media coverage and fundraising efforts using video of Alex in four point restraint naked on a hospital bed, tried to overdose Alex on sleep medication, then stabbed him repeatedly and violently to death. Not satisfied, they then stabbed his cat to death as well

London McCabe, 2014, credit NBC News

London McCabe's mother, who after adopting a similar style of blogging and successfully fundraising, made statements on camera in front of her son about wanting to "pull a Thelma and Louise", and later threw him off the Yaquina bridge. I could fill this blog with examples like this. It is simply too heartbreaking to do so.

 In the past, I tried to call out parents who exhibited these types of behaviors because I feel these acts are a sign of worse things to come and I strongly believe this is a pattern that will not end well. Posts like "You are NOT Adam Lanza's Mother"  are an attempt to show other disabled offspring's parents that these acts are dangerous, permanently harm their children, and are a red flag the parents need counseling. But the internet and any moment of media attention are lures that no voice of reason can overcome.

Apparently, parents Jason and Kate Wells have not garnered sufficient attention for themselves and have taken to live-tweeting their autistic teenage son having a meltdown on the excuse that they are educating others. I will not post the article about it. All I will say is they are a couple from Peterborough, Canada. Dehumanizing your own child does not educate anyone about autism. This degree of exposure of a vulnerable teen is no different from making them a sideshow act at a circus. It is abusive behavior and bad parenting. It is a display of the serious psychological problems the parents are having and is a sign that the parents need crisis counseling and intensive interventions for their own mental health and the safety of their neurodivergent son. It does not show anything about their son, his neurology, or his adolescence, except the parents' own ignorance of what is happening to their son when a meltdown is occurring and how to help him manage it in a humane, professional, and loving manner.

I take issue with any parent violating health laws, the privacy of their own children, and placing their children at risk of harm to feed their followers and gain social networking capital. I find it particularly disturbing behavior when the child is disabled and may never be able to litigate against the parents for presenting damaging video content on the internet about them.

The most important takeaway from this latest episode of digital exhibitionism at the expense of a disabled teen is all of us who are parents to neurodivergent children need to understand that this is not something that we should be applauding and encouraging. We should be warning parents about it as an indicator of serious problems in that home. It is a crooked line in a pattern that leads to a bad end. Every autistic teenager is not melting down attacking their parents 24/7 across the country. Broadcasting individual negative experiences in a one-sided manner and generalizing across the community because individual parents may have a personal wish to get their teenaged son out of their home is WRONG, disturbing, and causes harm to all of us. Address the actual issue. If as parents the Wells need to transition their son out of their care because they are unable to care for him, they need to contact the proper authorities or do what other parents have done. Parents have created individualized housing, care, and transitional services for adult children in places where those services are lacking. Had the Wells spent less time broadcasting and more time reading, perhaps they could have broadcast how they worked with their son to help him through the additional stressors of his teen years and gain him some respite and autonomy from them.

We need to begin looking for solutions to help our children rather than using the internet to make their lives all about ours. It is called being a parent. Let us all begin acting like responsible ones.


-----------

In memory of all the murdered divergent children, with hope that speaking out helps end the killings

Neurodivergence and Representation: People Maps and Farewells II

What follows now is an adaptation of a Facebook note entitled "The Year In Hope", the last of the series I posted on my now unpublished personal activist's page, because I think it says more of what I wanted to say here and I have too much to say. This will be my Part II of a Three part post featuring Leah Kelley's Magic Card People Map, a great accessibility tool that she writes about in "Gathering at TASH and The Magic People Map." Those who have expressed an interest in having cards for themselves can ask Leah about them at http://30daysofautism.wordpress.com .

Before the debacle of Facebook's year recapping app forcing users to remember traumatic events of 2014, Facebook had their app for grabbing photos and recapping the timeline year active again. 2014 was a year I don't really wish to recap. The cost in lives of disabled children and the human rights

Ariane Zurcher, writer, speaker, artist,
activist, mother  and ally of Emma
Zurcher-Long. Ariane embodies the
community building autism parent by
tackling tough topics and giving the podium
to her daughter to speak out about
nonspeaking autism and representation

losses are just too high to celebrate. I will be on hiatus from activism for at least part of this year. So I'm continuing the
 people map of some of those dedicated folk I think should be recognized for selflessly standing up for what is right, and the stalwart parent allies who stand with them.

There is something very important that I am asking of everyone of you. whether your activism is all online or you are community organizing, marching in protests, or standing in congressional offices and trying to make things right, please don't think about political expediency, tactical advantage, career opportunity, or personal gain . Think about what you are fighting for.

There are turning points in activism where people must  choose between their own ascension, the message they are meant to convey in order to drive change to those they advocate for or represent, and political expediency. Sometimes the internet results in a dichotomous environment where these moments of moral truth are not just sharper and more immediate. They are painfully public.  Stand for the truth. Be brave. Even if you stand alone.

Adriana is a living example that highly
ethical, highly qualified care givers
can be allies against ableism in the truest sense.
With Adriana's dedicated support, Amy Sequenzia
 is able to balance a busy life of activism with
self care and engaging our community
fully.

 Without deconstruction of falsehood, change is not possible. Without criticism (even of those who

may be somewhat beneficial to causes but are flawed in a way that damages in the long run) there is no moving forward. If we are afraid to call people and organizations out when they display shortcomings that have the long term potential to harm progress towards justice and equality inclusive of all, then what we live in is  no longer a democracy and we are all lost.

My hope at the beginning of 2014 was that we all became braver people. We need that embodiment of true courage. For those of us who are parents, I hoped  we might demonstrate by example that the true meaning of parenting is finding our own way to accept allowing our children to grow up and age with the supports and accommodations needed to live autonomous lives. What I have seen is a year in which too many systems online and offline exist that perpetuate the gaslighting of parental attitudes about what disability is and what the struggles of parenting are. So many negative groups online have influenced the attitudes of parents and care providers that crimes against our children have  increased and a victim's disability is always used after horrible crimes to justify them. Hundreds of social media groups, web sites and blogs, present such horrifically negative views of what parenting and caring for neurodivergent loved ones means.  Readers who are already sleepless, clinically depressed and seeking solace instead find large populations of similarly clinically depressed parents escalating despondency. The danger in such groups is they foster behavioral and emotional contagion.

Need an example of emotional contagion? Remember that 2014 was the year of the disclosure for the infamous Facebook newsfeed psychology experiment? The researcher manipulated the newsfeeds of about 1 million users in an attempt to manipulate the emotional contagion of users and drive happiness or melancholy. People have a tendency to converge emotionally. The worst example of this is the fixation of Jillian McCabe, the mother threw her beautiful son London McCabe off an Oregon bridge, with that infamous scene in the horrible Autism Speaks movie "Autism Every Day". She wrote that she really identified with "Alison Tepper Singer who contemplated driving off a bridge with her autistic daughter Judie Singer."

 My hope is that whether I am an activist or not, our community takes on the critical task of deconstructing the emotional contagion of these negative content generating organizations and groups.We should be teaching everyone to recognize the signs of clinical parental depression, emergent dangerous thoughts,  unstable emotional states due to chronic sleep deprivation. We need to spot the red flags apparent in certain parent support groups and keep them from instigating harmful behavior towards disabled people.  I pray everyone understands this and if groups are anyone's forte, they begin a wider grassroots building of groups that make it clear that our present views on disability in general and autism in particular are being imposed upon us and what we need to do is begin with understanding how this ableism permeates our lives so we can first keep our mental health and then help attack the true causes of challenges to parenting neurodivergent children: special education systems that aren't working, disparities in what should be a multidisciplinary one-stop care models for meeting the

Emily Titon is an autistic activist for disability
rights, human rights, and social justice. Emily
sits on the boards of several disability rights
organizations and can just as easily be found
community organizing for transformative change
Her work on the exposure of the JRC is a typical
example of excellence in activism.

lifelong medical, dental and vision needs of disabled community members, and research and technology investments in adaptive supports and accommodations that will allow universal design to fulfill its true purpose:  to be inherently inclusive of accommodation by design for disabled people, the world's largest and most underserved minority.

We need to think about how each organization that claims to advocate for our children is actually doing so. How far will they go to help our children? Do they have significant leadership representation of people like our children, regardless of degree of apparent disability? Because only those people, intersected, of our children's races, religions, ethnicities, gender identities, and sexual orientations will understand what life is like for them now and be motivated to drive change for them. Unless you have lived as an autistic adult, how can you possibly know the gaps in adaptive communities, education, health care policies,  or the research needed to significantly improve the quality of life of autistic children when they become adults and age?  So we do need to give the podium to those who represent our children and allow them to tell us what those critical obstacles are. Before it is too late.

The case of Reginald Cornelius Latson is a crucible for representation beyond the disability nonprofit industrial complex. How have organizations who claim to be diverse disability rights advocacy organizations responded to four years of harm done to Neli?

Lei Wiley-Mysdke is the founding curator
of the Ed Wiley Autism Acceptance Lending Library
A community building effort to educate and
empower both the autism community and the
general public on neurodivergence 

Remember that Neli was able to move freely and without supervision in his community before this catastrophic encounter with police. This should have every organization and activist thinking that whatever went wrong, it was not wrong with a young man who had no prior criminal history, no record of aggression in school, and a diagnosis of Asperger's  given much later than other children, even those of color. So with that understanding, we must think of what was done to him that triggered crises and permanently damanged his mental well being rather than simply anthropomorphizing autism itself. Are organizations informing their members that the DOJ had already brought suit against the State of Virginia for their treatment of prisoners like Neli? How are your favorite organizations responding here? Did you only hear of the Latson case recently or not at all? That should tell you how they will treat your son or daughter should they fall afoul of the criminal justice system. Know who you are supporting before your fundraise, buy hair dye and run that 5k.

Back to that hope that people speak the truth without fear. Fear silences. Look at what is happening

Beth Ryan is a parent activist and example
of a transformative community organizer for
good  with healing efforts such as the online
 support group Parenting Autistic Children
 With Love And Acceptance,  

right now. A woman is shot, two police officers are shot, and this tragedy is being leveraged into a way of forcibly silencing

calls for police reform and judicial review of a whole host of incidents in which deadly force was misused and injustice was done. The wrongness of that is nauseating. Redress, transparency, and accountability are what make a democracy. Any attempt to smother criticism of public servants by the public who hire them is a red flag that all is not right.  My hope is that when a truth needs to be told we don't do what is done in special needs circles too much: that is we don't think of only our children's political advantages and abandon the chance to move forward as a community. One voice, regardless of how many connections it has and its individual fame, is small and ultimately dependent on those who follow it. Fame is a fickle mate. Aim to gather community and make it strong. If everyone in our community sees the emperor of ableism points at that narcissistic wrong and shouts "The emperor has no clothes!" even those who survive by kissing the emperor's arse can no longer deny the truth of its wrongness exposed. So don't hesitate. Make our world better. When you see a wrong say so. Don't do the math to calculate an advantage for yourselves.

Remember the KONY 2012 guy Jason Russell? He did what many autism advocates end up doing. He allowed the brief media spotlight and sudden intense popularity to make him more important than the cause he championed.  That led to disaster. Sadly it was never about him. It was about the invisible children. And he went from making a difference to making everyone forget about what he was fighting for. Don't be that

Dr. Anderson-Grace is an autistic academic,
educator, activist, and board member on disability
rights organization. One of the founders of NeuroQueer,
she represents a movement that commands representation
and unity in intersected populations within our
community such that even her brief involvement
in community results in transformative change.

person.

We are fighting for the human rights and civil rights of our loved ones. We are fighting for their equal representation in the society we live in. We are not looking for a segregated life on the fringes of society. We want our children to be respected as they are and given the tools they need to live in the society we live in. The minute we forget what our purpose is we are lost. I've seen it too much this year. Don't let the next victim be you.

My last hope and wish is that everyone work to build a new autism community. This can be done so simply and online. Know the numbers for all your local help agencies. When someone says they are hungry, have no shelter, need to an ear, give them crisis hotlines and food banks and shelter addresses and true help. Resources in the internet age are so easy to find but so few who are in need know about them. This is what I've always meant about pay it forward activism. If you help someone, tell them to remember and help another family or person. Whatever is in a person's ability to accomplish to help other members of our community, that person should try and accomplish it. It would make such a great difference in the lives of autistic children and adults. This is the antidote for the hundreds of groups out there on the web where parents trigger themselves with repeated stories of how they are suffering with their kids and how hopeless and without a future things are until someone decides it is okay to murder their own disabled children. The only genuine antidote is a truly united, diverse, inclusive community. I feel I have failed my part of the task to light a spark to build an online version of it. Maybe all of you can succeed where I have not. But you must begin with community concern beyond personal concern. Make sure your children and family are well. Balance your time so your mental health is in great shape. Then reach out and join with others to help make things better.

Peace


This is the end of Part II.  The final section, Part III  is next.

Mentions links etc.

Leah Kelley's Magic People Map Card info can be found above by mousing over Gathering at TASH and the Magic People Map. Inquiries about acquiring cards for your event can be obtained by commenting on her blog 30 Days of Autism:  
http://30daysofautism.wordpress.com/

The Autism Parenting Positivity Group Parenting Autistic Children with Love and Acceptance can be found here:
 https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance?fref=nf

Ariane Zurcher and Emma Zurcher-Long's joint blog, and ongoing chronicle of autism positivity in parenting and autistic self advocacy for autistic tweens and teens who use AAC to communicate can be found here: http://emmashopebook.com/

Dr. Ibby Anderson -Grace's blog Tiny Grace Notes - Ask an Autistic, for parents with questions for autistic adults who are also professionals, academics, and topic experts can be found here:
http://tinygracenotes.blogspot.com/

The Letters to Autistic Kids Project, founded by Dr. Ibby Grace and Leah Kelley, can be found here: http://toautistickids.blogspot.com/ 

Lei Wiley-Mysdke is the curating founder of Ed Wiley Autism Acceptance Lending Library, for information:  https://www.facebook.com/EdWileyAutismAcceptance?pnref=lhc

Questions for autistic activist Amy Sequenzia and Adriana about building long term friendships with mutual respect between disabled activists and care providers, supported typing, and balancing the livea of active disabled people with complex health management can be addressed to Amy Sequenzia and Adriana through Amy's website:  http://nonspeakingautisticspeaking.blogspot.com/

The further adventures in activism of Emily Titon can be followed by following her on Facebook or twitter @imnoteamplayer, or Googling her. Here she is in  a Boston Globe article with Cheryl McCollins, the mother of JRC torture victim Andre McCollins.
http://c.o0bg.com/rf/image_585w/Boston/2011-2020/2012/05/09/BostonGlobe.com/Metro/Images/10rotenberg_photo.jpg