Against The Autism Parent Feedback Loop of Woe

"Please try to remember that what they believe, as well as what they do and cause you to endure does not testify to your inferiority but to their inhumanity "

-James Baldwin 

The Fire Next Time  

My biracial nonverbal autistic son,  at about age 5,
expressing shock through the gestural language he created.
Image posted with the consent of subject ©Kerima Cevik

Stephen Prutsman posted an opinion piece to the Autism Society San Francisco Bay Area blog, and while browsing newsfeeds on social media I read it. The blog post disturbed me so much I posted a brief response in the comment section.

Mr. Prutsman headed his article with two images, a rainbow infinity symbol image he meant to represent the neurodiversity movement, and a disturbing photograph previously posted by his ASA chapter president alleging to show property damage to the upholstered seats of her car done by her autistic son.

Despite the reality that all content not spontaneously live streamed online is curated content, no one questioned the veracity of the statement that property damage to this car was inflicted by an autistic teen. That was something that bothered me. I wasn't there when the alleged incident took place. I am a stranger viewing this content and reading the hashtag of autism awareness beneath it. How do I know how the seats of this vehicle were damaged? I am presuming the honesty of a parent who shamelessly posts her own son's worst moments for the shock value. People can only ascertain character from words and deeds not from organization position and status. Status and power are not equal to ethics so, despite my presumption that the chapter president wouldn't post a claim that is untrue, it should still be pointed out that broadcasting anything to a public audience needs fact-checking. That means accusations about the behavior of another human being that cannot be verified should be viewed with skepticism when the accused individual is disabled such that they cannot defend themselves.  

 His article included a disturbing comparison that clumsily used African Americans and Sickle Cell Disorder. That was, in fact, a type of clueless racial microaggression. But the nature of Prutsman's blog post disturbed me so much I decided to address the inappropriate use of race and race-related illness as an extension of the use of Black suffering by affluent white people to gain an edge in debates having nothing to do with issues of race or African American people like myself elsewhere.

 I am guessing his goal was to lay out his thesis while defending his chapter president's right to display negative content about her disabled son on the "raising awareness" excuse of what they both define as the real or true manifestation of autism. 

It got me thinking about this large problem I once thought our community would work at solving. The problem is an autism parent emotional sink that is Internet-hosted, blog and social media fed, and toxic. 

My son, and Afro-Latino presenting male, with brown curly hair
wearing a black turtleneck sweater,
 holding his AAC device, an iPad equipped with
TouchChat AAC outdoors
green trees can be seen in the background.
Image posted with the consent of the subject. ©Kerima Cevik

It isn't because nonverbal autistics like my son are "acute" as Mr. Prutsman infers in his essay. It is my hypothesis that such an emotional sink happens when parents like Mr. Prutsman and his ASA chapter president begin losing the emotional and physical wherewithal to support their disabled family member's needs without help. Under these circumstances, when negative events happen, these parents retaliate by venting their clinical depression, sleep deprivation, frustration, and distress on the autistic offspring by posting their worst moments on social media. 

When I named this blog The Autism Wars I meant the wars for accommodation, inclusion, and representation for my son and his neurological peers. The wars for the presumption of his competence. From what I understood of his essay, Mr. Prutsman believes the autism community can be divided into two warring camps and his camp, camp b, is at war with the neurodiversity camp, camp a. 

I am not at war with Mr. Prutsman, his oversharing chapter president or the SFASA. If I am at war with anything, it is the culture where ableist attitudes like theirs are incubated. 

Is this group of parents within SFASA, led by its executives like Mr. Prutsman and its chapter president, caught up in what I call the autism parent feedback loop of woe? If so, as this pain/frustration feedback loop escalates unencumbered, is there a genuine risk of catastrophic outcomes? 

I have had these concerns since encountering parental rhetoric similar to parts of Mr. Prutsman's essay in blogs by others whose written displays of frustration and despair escalated to a deadly conclusion. That is why seeing such a post from an executive of an autism advocacy chapter so disturbed me.  He and his chapter president are part of the leadership of an advocacy organization supposedly existing to champion autistics like my son. What message is this sending to the disabled members of this chapter? I wonder if they realize how many autistic adults parent autistic chidlren? How many such parents will happen upon Prutsman's blog through social media browsing?

Let me take a minute to define how I think this feedback loop works:

1. Digital Exhibitionism: Autism parent group leaders who constantly overshare about their challenges with their kids, who make every disability-related challenge experienced by their offspring about them rather than the child, are using this as a coping mechanism for their own frustration and individual distress. They are typically overwhelmed (frustrated, sleep deprived, clinically depressed, etc) and as a result, may be making decisions with compromised executive function. 

2. The positive Feedback loop of Pain, Grief, Frustration: These de facto peer-moderated support groups for overwhelmed parents, if left unregulated, include lots of positive attention for expressing distress and pain. The more the lead parent posts, the louder that parent complains, the more attention they get.

3. If left unchecked, getting attention for being in pain becomes its own reward. The more that state of mind is rewarded, the more motivation there is to constantly express pain through digital exhibitionism and the publishing of more dramatic negative content.

4. This feedback loop does damage to a person's motivation to seek actual long-term help for the targeted disabled child or themselves because it's easier, more accessible, and more rewarding short term when people need immediate comfort after a distressing situation at the expense of one's autistic child. This is especially the case when the autistic target is nonverbal and multiply-disabled.

5. Any attempt to express concern for the disabled target of the negative content to a group in this state of mind will only strengthen its resolve because it encourages the group to make the problem about those they perceive as their attackers. It discourages introspection and allows further wallowing in frustrated angry pain. It promotes in-group solidarity because now there's a common enemy who they believe is persecuting them.

6. Without urgent, long-term, quality trauma-informed care for the parents triggering this cycle by generating and posting the curated, negative content such groups need to validate their anger/pain/frustration, people who are caught in this feedback loop risk eventually escalating to violence towards the targeted disabled family members and themselves. The fact that people who have done this are excused for their behavior and the violence is made to seem inevitable (and the fault of the target) further compounds the issue. 

The case of Isabelle Stapleton, the autistic young woman who was the target of her mother Kelli's escalating digital exhibitionism and eventually became the victim of her mother's attempt to murder her, is an example of how constant inappropriate validation for posting such negative content online can escalate and become dangerous to the disabled target. 

 Kelli Stapleton's constant postings of videos and images violating Isabelle's HIPAA rights and her blog about parenting Isabelle deliberately named The Status Woe acquired a large, cult-like following of parents. The tone of frustration and defiance at anyone expressing concern about posting negative content is similar in tone and approach to parts of Mr. Prutsman's written content.

 I believe groups and individuals with large public platforms who promote this culture of validating negative content targeting autistic offspring create an attitudinal shift that enables escalating risks of potential harm to the autistic youth targeted by such digital assaults. 

The plight of artificial intelligence exposed to negative or offensive social media content gives us a painful clue of what impact negative social media curating and consumption can have on people.  Norman the MIT AI  fed with Reddit data who now only thinks of murder and death, and Tay, Microsoft's chatbot who Twitter taught to be racist and misogynist,  show us that the culture of frustration, perpetual mourning, infantilization, hostile objectification of autistics with high support needs, and resentment that drives oversharing and defense of negative content in these autism parent groups may pervert the minds of exhausted, distressed parents. 

Our community has an abnormally high rate of filicide-suicides. I believe this phenomenon needs to be studied in the context of the influence of online groups caught in these feedback loops. 

Here is my other concern with his article.  

Mr. Prutsman's thesis in his essay was meant to explain his answering 'yes' to the question “Is it Time to Give Up on a Single Diagnostic Label for Autism?” citing the title of a questionable commentary by  Dr. Simon Baron-Cohen in Scientific American. 

Prutsman's essay argues for a new label as a kind of weaponized tool for him to wield as an autism dad. His demand for a new label for "acute" autism is not because the group diagnostic designation fails to encompass the entire autistic population, but because he views the label autism as being "tainted" by any group that disagrees with or disputes their parental group's rigid, negative, definition of autism. Prutsman defines severity and indeed autism itself by how he and parents like his chapter president view any negative behaviors rather than by proper diagnostic standards.

  He appears to blame the neurodiversity movement for what he calls 'tainting' of the autism label. Prutsman writes that this tainting happened by presenting autism as an identity, and overemphasis on positive attributes of being autistic by the neurodiversity movement.  

What is interesting about how he defines the neurodiversity philosophy is that it is not at all accurate. Unfortunately, the term neurodiversity has been conflated and the popularity of the book NeuroTribes confused rather than clarified the term. 

It is clear now that a great many autism parents don't understand the concept. Let me repeat one of the best quotes I have ever read about neurodiversity :

"Neurodiversity isn't about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It's about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens."
- Shain M. Neumeier, Esq.

Mr. Prutsman othered anyone who might object to the targeting of autistic youth by the digital display his chapter president employed. He lumped them together into a stereotyped other by listing any commentary from those he did not know and dismissing it. Under the category of non-relevant commentators, he cited the neurodiversity movement or "group a," non-participating chapter members,  and online readers like me who were not local. This allowed him to define a collective enemy for his group to view as antagonists. 

 Prutsman implies that the enemy has won the autism label battle.  Now his group must have a new autism label for their kids, that restores complete power and control of the autism conversation and public policy dictatorship to them.

The sad reality of things is that parents like Mr. Prutsman and SFASA's chapter president who are affluent, white, and embedded in the feedback loop of woe are still the loudest and most heard voices in our community. Yet that massive platform drowning out the voices of the autistics they are supposedly speaking for doesn't seem to be enough.

Their resentment of everyone else, particularly autistic adults having agency in the future of what happens in their own lives harms my son by perpetuating a deep seeded ableism that negatively influences the public view of nonverbal high support need autistic youth. 

Autism parent feedback loops of pain and frustration don't provide any solutions to the behavioral challenges parents like Mr. Prutsman want constantly highlighted by generating and promoting negative curated content.

 The emotional opinion that professional diagnostic labels should be changed to disenfranchise one part of the community and allow control of autism public policy to rest completely in the hands of enclaves of parents too wrapped up in their own feedback loops of misery to  see the need to protect their own disabled offspring by not oversharing negative content is a risky proposition on his part. 

 He is not really asking for a new autism diagnostic label. He's asking for a legal or medical excuse to excise a massive part of the autism community so they can run the autism world. Without the consent or voices of their own autistic loved ones or parents like me.

And here is a sidenote. Yes, nonverbal humans can indicate consent if they are allowed to. Once competence is presumed and communication pathways actively sought for nonspeaking people, yes and no gestures, switches even eye blinks are possible.

 I don't need a new DSM label for my autistic son. Nor do I need a parent who is oblivious to what our son needs demanding one in the name of all high support needs parents and their offspring. What I need is for parents like Mr. Prutsman to grasp is that every stakeholder in our community has a right to equal representation whether he agrees with it or not. He can't live in a world segregated by those he accepts and those he doesn't. I'm Black. I don't need to remind us that my racial peers are still suffering from that idea.

 Abusing one's large platform to enable digital oversharing and abusive content generation is contrary to the principles of an autism advocacy chapter executive. But what can be done to reach such parents? I am afraid the nature of Internet interaction makes such an effort futile.

The question for us is what can be done to help break the toxic online culture that builds these enclaves of parents trapped in the autism parent feedback loop of woe? How can advocacy groups reach parents who are in this state? What happens when the loop exists within an advocacy organization's power base? 

Because something has to change here. This type of dysfunction is the root of community altercations and I suspect the root of eventual harm to autistic children and youth. We must seek solutions.

 This is unsustainable. 

----------------------------------------------------

In Memory of Courtney Liltz

"I think an ideology, a dangerous ideology, that preaches that people are better off dead than disabled is what led to Alex Spourdalakis' murder."

Ari Ne'eman

A young Courtney Liltz hugs adoptive mother Bonnie. ©CNN screenshot

Bonnie Liltz was given a reduced charge of manslaughter and sentenced to four years in prison for the premeditated murder of her nonspeaking disabled adopted daughter Courtney.  Courtney was a 28-year-old woman with CP and had a right to survive her mother's potential death. Bonnie's excuse was that she has severe health concerns and did not wish to die and leave Courtney back in an institution where she would receive terrible care.

Bonnie was 19 when she was diagnosed with ovarian cancer. The treatment at that time was basically radiation sickness inducing and Bonnie had devastating health problems ever since. She chose to adopt Courtney, fully aware of Courtney's lifetime support needs as well as her own frail health. During sentencing a parade of family, friends, and neighbors requested leniency. Her attorney repeatedly stated that Bonnie had dedicated herself to Courtney's care and that Courtney's murder was an act of love.

Nope. NOPE. NOPE.

This is such an insult to the hundreds of disabled and chronically ill parents with high support needs who lovingly future plan and parent their own disabled children and keep up with changes in the law that have changed service providing for adults with intense support needs like Courtney. Courtney could have remained in Bonnie's home, the home she knew and grew up with if Bonnie had achieved home ownership. Courtney was adopted by Bonnie at age 5. So in the 23 years that followed, Bonnie, who knew she had a horrific health history and declining health, did not reach out to all these friends and family who are singing her praises in court and come up with the 24-hour nursing and personal care plan Courtney would need after she died? Did no disability service agency explain that Courtney could have the services she needed at home or in the community? The tacit structural ableism rampant in media reporting of these events leaves so many questions unanswered because their narratives leave Courtney erased from both her life and death, her existence defined by her mother as self-sacrificing care providing single-parent, her mother's friends and family relating her mother's struggles, and  her mother's justifications for her murder. Courtney deserves better.

Courtney with mother Bonnie in a holiday photo. Courtney
was murdered by Bonnie June 5,2015  ©Facebook

Why didn't Bonnie, knowing her own health was failing, set Courtney up in a community-based placement of her own with staff to care for her after Courtney's 21st birthday? Why would she just say to herself "If I die, what will happen to Courtney? Well, I'd better kill her then?" Why is it that in so many of these murder-suicide attempts the murderer seems to recover without any real harm but the disabled victim has no chance of survival?

If I die, and any of you, my friends, family, or  colleagues, say "she dedicated her life to that severely disabled son of hers" I will come back as a ghost and kick your collective asses. If you have any love and respect for me in life, do me the service of not cheapening my relationship with my son after my demise. Mustafa deserves better.

Let us make this clear. If I die, the only thing I want anyone saying about me and my son is that I dedicated my life to fighting for my son's right to have autonomy and as much agency in his own life as he can manage. Anything else is dehumanizing to my son, and my son deserves better than to be defined by the idea that I was unpaid support staff for him and I mothered him. He can't become some sort of object of pity in his dead mother's life. If I die, I expect our community to step up and help my husband and adult daughter ensure my son has his human rights to a free and appropriate education, a community-based living placement neither in a group home nor an institution and the supports he needs to thrive after I'm dust in the ground.

The only legacy any parent who is the primary care provider for a nonspeaking disabled person must leave is the memory of their efforts in life to guarantee the survival, autonomy and freedom of that disabled human to live as full a life as possible whether they survive to care for them or not. Everything we do, from their diagnosis day to the last breath we take, must ensure the survival of our offspring. That is what a mother's job is. That is my damn job. It doesn't make me a warrior mother. It doesn't make me superlative. It makes me Mustafa's mother doing my job by him and fighting for his human rights to respect, dignity and access to the same community I fought to live in as a woman of color. 

Murder is not an act of mercy. We must all stop propagating this lie that murdering a severely disabled loved one is an act of mercy simply because so many people are so ignorant of what it means to be disabled that their fear of visible disability drives these horrible thoughts. If you are a parent and have ingested this poison you must expel it from your heart. This ideology that people are better off dead than disabled is a terribly dangerous lie. Part of moving past that toxic culture and towards saving lives is to recognize that everyone has the right to an autonomous life and agency in that life. Courtney's life was hers to live and not her mother's life to take. Mustafa and I fought to bring him into this world and survived. I sure as hell am not going to take the valiant war he has fought to overcome the mountain of obstacles posed by his disabilities and dishonor our joint fight for survival by murdering him simply because I have been told my life may end before his.

Rather than fearing what the future might hold for our offspring help build a world of communities designed to accommodate everyone and stop being afraid to let your disabled children grow up and live an adult life. Imagine what their lives without you will look like and help them make that happen now. STOP KILLING THEM. Bend your collective parental wills and energies to making the world work for them. The ultimate failure in this cycle of violence against disabled adult children by their carers is a systemic one. Bonnie should have been shown that Courtney would not have to survive her death in any institution and Bonnie should have been able to transition Courtney into an autonomous community-based living situation at 21 that Bonnie could have overseen for these 7 years. I would argue that if Bonnie truly loved Courtney as much as everyone said she did, a secure future plan being implemented now for Courtney would have dismissed thoughts of filicide on Bonnie's part and she might have sought professional help for her own wish to end her life, and possibly two lives would have been saved.

What needs to happen is that we must all get to work on the foundational issues that can prevent these murders before they happen. That begins with all of us parents understanding that our deaths are not the end of the world for our severely disabled children. We must act now to ensure they are able to have an excellent quality of life both now and when we leave the world. Fight to save our children's future not to end their lives.

If I die, and my son survives, thrives, and remembers he had a mother who loved him, I know I will have left this earth feeling as if I have achieved paradise. His survival, his growing up to be a man who can exercise his human rights and civil rights and be accepted as he is my only goal. Remember that. Remember the tragedy of Courtney Liltz and the toxic ideology that led to her murder.  Remember Courtney as a woman who is being erased from her own story and don't allow it to happen. Be aware that filicidal and suicidal ideations require professional help. If you hear it, get that parent help. Don't enable it by supporting this ideology on any platform for any reason. Don't stand by and do nothing, then sing the praises of the murderer. Courtney is not better off in Heaven. Courtney is not better off knowing the one person she trusted murdered her. To claim a belief in God and take a life placed on this earth and meant to outlive you means you have no faith that God will protect the life He brought on this earth after you've left it. That is the ultimate in religious hypocrisy.

Justice was nearly undone by those who by their testimony eulogized Bonnie Liltz, and thus erased Courtney Liltz's value as a person with the right to live, decimating her rights as a victim with the right to justice. If we continue to allow this mentality to spread, others will target our children and decide it is okay to end their lives without their consent or our knowledge. So wake up and educate people about your disabled loved one's right to exist. Begin with your own friends, neighbors, and family.

I was leaving the hospital, being wheeled out to my transportation.The LPN, said: "your son is autistic? Wow, that's so sad." I turned in my wheelchair and replied, "Oh? Why?" She was so taken aback that she began with "well, uh, I mean, er, you know.."  I was firm. "My son is brave, resilient, and compassionate. He is also incredibly patient." "So it is not sad. It is an honor to be his mother and be part of his life." We spoke a while longer, and she left thoughtfully reflecting on what we discussed about Mustafa and his value as a person.

Begin by changing the conversation. No exceptions. What is at risk is our children's lives.
Peace

On The Murder of Cynthia Busch

Image of Dr. Martin Luther King with the following quoted words: "We must be concerned not merely about who murdered them, but about the system, the way of life, the philosophy which produced the murderers. " - MLK Jr., Eulogy for the Martyred Children (1963) 

On March 10, 2016, 24-year-old Cynthia Busch was shot to death by her mother, Barbara Busch, on the couch in their basement. Ms. Busch then turned the gun on herself.

The Fairfield Twp Department of Developmental Disabilities did not respond when asked if they had visited the family recently.

Because I am one of literally thousands of parents globally who care for children with intense support needs with no respite except his father, and I'm fortunate enough to network globally with other parent care providers in countries with fewer supports and services than we have here, who are overwhelmed, exhausted, and go through cycles of depression, I can't tell you how angry I am when with one glance at the disabled victim any public entity reporting a crime concludes that this act occurred because the murderer was tired of caring for the victim.  Leading with this excuse for murder is an insult to all of us out here loving our children and doing our best to care for them regardless of adversity. It is an insult to all those care providers who lovingly care for their clients though full lives. Most importantly it is an insult to people like my son, a kind and courageous human being in his own right, and all those neurodivergent people who deserve better than to be thought of as burdens on care providers.  It sends the wrong kind of message. It functions as a passive form of enabling people to absolve those who commit this most heinous crime as if it is a legitimate excusable act. Then, like 6-year-old London McCabe's mother Jillian, people think it is okay to premeditate and murder their neurodivergent children.

No one should project personal ableist feelings about what it is like to care for disabled offspring when learning about a victim's disabilities. If parents love their children they ensure those children have an avenue of care after they are gone or when they realize they are no longer able to care for them alone. Barbara Busch had a boyfriend, friends, and neighbors who knew her and Cynthia for over 15 years. And yet they did not help her transition Cynthia to a safe place to be cared for and help her to seek professional support for clinical depression? Parents who love their disabled offspring don't murder them.  Bullet wounds are a painful way to die. You don't shoot someone you love! There was no love or mercy involved in this crime. Responsible community reporting demands that it be made clear that murdering a severely disabled person is neither an act of love or an act of mercy.

This perverse slant on reporting her murder erased Cynthia Busch's 24 years of life  by making her scenery in her own murder. Worse, her existence as a disabled person with intense needs was presented as the implied cause of her own death.  What actually happened to Cynthia Busch was a variant of domestic violence. Let us all consider looking at things from this perspective for a moment. Over a year ago my family moved out of a county here known for ridiculously high rates of domestic violence-related murders. A man in that county recently confessed to  shooting the mother of his child, a beloved elementary school teacher, and their two-year-old child to death.  No one anywhere looked and the lifeless body of the toddler and reported, "well clearly the child support...just looking at the challenge of dealing with a toddler... he was clearly overwhelmed." We would all be horrified if anyone in journalism, law enforcement, social services, any neighbors or friends of the victims said anything of the sort to apologize for the obscene crime committed.

Why is it okay to report murders of disabled victims with headlines like "PD: Fairfield woman killed adult daughter, self because she was tired of caring for daughter (Barbara Busch must have been overwhelmed)?"

©WCPO Cincinnati news headline screenshot

What if Cynthia wanted to live and was unable to express this? What if she loved her life as she was living it and was happy in her life? Does it take that possibility to make readers feel that the murder was more unjust and horrific? There are countless disabled adults who write, blog, speak, and have books about spending years of their lives without being able to communicate while understanding everything that occurred around them. Martin Pistorius is a prime example. He heard his mother say to him one day "I hope you die." She regrets that she said it now, and regrets more that he had become so objectified in her eyes that she believed he could not hear or understand what she was saying to him. Had a caring, observant nurse not insisted Martin's parents get him re-accessed and had his mother not put assistive technology to communicate within his reach, he would still be trapped in his own body without a voice in his own life. Instead, he is working, married, happy. We will never know what Cynthia could have accomplished. Because even in death, her personhood is dismissed. The injustice of this should enrage us all.

The police investigation concluded the murderer was overwhelmed. Did the neighbors think well she must have thought it through and decided this was for the best? Really?

1. Please stop enabling people by passively saying when people kill their loved ones it is understandable if they are severely disabled because the care for disabled victims overwhelmed the murderer. 

2. Treat 24-year-old domestic violence murder victims like adult victims of murder by an abusive perpetrator. Investigate this as if this victim were the most beautiful woman in the world with everything to live for, and her life was snatched away from her because that is the reality here.

3. Report on how the murder victim ended up in harms way. If the carer's boyfriend, neighbors, and the DDA knew her state of mind and level of fatigue, why was nothing done to help Cynthia receive care from an alternate provider until her mother was in a better headspace? 

4. How did the police reach the conclusion that the reason for Barbara's murder of Cynthia was because she was tired of caring for her? 

5.  Seek true causation by asking the right question: Why is this happening with intellectually disabled adults and children so much?

The answer to these questions might prevent another murder.

Each life has meaning and Cynthia's life should have been hers to live to the best of her ability. Life is not a privilege based upon how able one is or how one can live it independent of others' care and support. We depend on strangers every day. We put our lives in their hands. Remember the suicidal young pilot who flew a plane into a mountain with passengers on it? We all recoiled from the wrongness of that. We didn't say, "he was tired of flying" or "he was overwhelmed." Everyone began demanding airlines globally do something to insure that all pilots be verified to be fit to fly airplanes without deliberately crashing them to kill the passengers onboard them.

Cynthia put her faith in the mother who brought her into this world and cared for her all her life. Barbara Busch did not call 911 and say "I am a danger to myself and my disabled daughter. I am overwhelmed." She chose to commit a violent act, and in doing so violated that trust in the same way Andreas Lubitz chose to harm others and himself. The passengers on  Germanwings Flight 9525 had the same value as Cynthia Busch did. All had an equal right to live.

When we understand that, we can end this cycle of murder-suicides.

One last thing. Call things what they are. However wonderful Barbara Busch's care providing and mothering skills were prior to this event, shooting Cynthia Busch was cold-blooded murder.

References:
The Murder of Cynthia Busch
http://www.wcpo.com/news/local-news/butler-county/fairfield-township/fairfield-township-police-chief-woman-killed-daughter-herself

The Murder of London McCabe
http://www.oregonlive.com/pacific-northwest-news/index.ssf/2016/02/sorry_was_all_mom_said_when_sh.html

Ghost Boy: The Story Of Martin Pistorius 
http://www.npr.org/2015/01/09/375928581/locked-man

The Deliberate Crash of Germanwings Flight 9525 
 https://en.wikipedia.org/wiki/Germanwings_Flight_9525

The Murders of Elementary school teacher Neshante Alesha Davis, 26, and her two-year-old daughter, Chloe Nichole Davis-Green
http://patch.com/maryland/bowie/slain-toddlers-father-admits-killing-girl-mother-report-0

Resources to help save lives permanently on my blog: 
http://theautismwars.blogspot.com/p/mourn-dead.html

The Matt and Isabelle Stapleton Open Letter Project

I am tired of the fascination many in our country have with the perpetrators of murder and attempted murder. This fascination is disturbing and when the victim is disabled,  habitually serves to completely erase them from the story of their own lives. The effort victims who survive make to recover should not be ignored because they are disabled.

I am therefore offering an alternative to the opportunistic behavior of attention seeking blogger parents wishing to twist the attempted murder of Isabelle Stapleton into some sort of sick platform to complain about their lives and vicariously publicize threats to harm their own disabled children.

I am writing to counter that blogging traffic, although I doubt it will catch on. I do not feel it is right to promote the name of an attempted murderer, no matter how upset I am that autism mothers who support this woman are generalizing and presenting their personal poisonous opinions as if all autism parents share them. I am also doing this to counter Phil Mcgraw using a tragedy to drive his show ratings up by othering the disabled victim and giving a confessed premeditated murderer a platform to justify her actions.

 Here are my letters to Isabelle and her father Matt. I have no idea if this will fit under a flashblog hashtag. This is best I can do.

Dear Mr. Stapleton,

First of all let me express my deepest sympathy for the tragedy your family has weathered and wish the best for you and your children. I was amazed and happy to see Isabelle’s progress in a youtube video that you were kind enough to post publicly. Thank you for that glimpse into Isabelle we were not really allowed to see before this catastrophe took place.

I know it is not my business, but in light of recent spates of autism mom blogging in support of your ex wife and her recent appearance on the Dr. Phil Show, I would like to ask a favor. I would like to ask that you consider securing legal representation for your daughter Isabelle and having that law firm or attorney sue to insure your ex wife does not continue to benefit from your daughter’s name, her attempted murder of Issy, Isabelle’s autism label, or any past care providing or contact with your daughter. I believe any attempt at publishing or making further television appearances, blogging, or making any media contact must be included in such a suit. 

I am asking because I am also called an autism mom, and I am offended by each and every mother who is presenting your ex-wife as the standard bearer for autism moms in general. I have no desire to be seen as someone who views my son’s autism as your ex-wife viewed her daughter’s autism. I do not give any other autism mom permission to make sweeping generalizations about me or my son. My son is medically classified as nonverbal. Like Isabelle, he has overcome great challenges and survived. He may need help all his life but it is my honor and privilege to be one of those who provides that help. He is not perfect. He has difficult moments. But he is always my autistic son, and I am proud of the way he deals with his difficult days and his good ones. Your ex wife doesn’t have a right to continue having a platform to defame my son and your daughter by generalizing private experiences into public thoughts. She lost that right when she chose to try and kill Isabelle.  Many autistic children are being bullied to the point of torture because of these statements, made thoughtlessly and selfishly by mothers unhappy with their situations and this needs to stop before more innocent children are harmed. 

Maybe you’ll read this and consider my request. You have taken over a family as a single parent and while I don’t agree with your support of Autism Speaks, I see you are doing all you can to help all your children move past this and make Isabelle certain that she is a wanted part of your family. I realize that litigation will bring up painful memories. But I also believe many attorneys would be willing to help pro bono.

Lastly I hope you do not make the mistake your ex wife did and anthropomorphize autism into the catchall evil neurological whipping post because that makes your daughter an object of hate. None of us want to see Isabelle victimized again. 

Sincerely 

Kerima Çevik
Mother of the Great and Powerful Mustafa, age 11, Autistic

Dear Isabelle,

I have wanted to write you for a very long time. I wanted to tell you how sorry I was to read about all the awful things that happened to you. Your mother should not have done the things she did to you. She was wrong. Nothing that happened to you was your fault. Please believe that.

 I have a son in your neurotribe. He is autistic and he is learning to type to communicate. He’s eleven years old right now. When he was four, we were told he was autistic. That day a great many negative things were said about our son. We were told we should be afraid of him, especially when he got older. Guess what? He’s now officially taller than I am. He is strong. I know because when I fell one day he grabbed my arm and caught me! But he is nothing like anyone said he would be. His dad and I are so glad we didn’t listen to them. We searched until we found a whole world of autistic adults. They helped us understand our son by telling us about their own lives and mistakes made to them so that we would not make the same mistakes with him. 

I am writing to tell you that I have a gift for you. I know you are fifteen now. When you and your family are ready, my gift to you is a open invitation to publish anything you want to write on my blog. The intellectual property rights to whatever you write will remain with you. I want you to know how important you are to autistic people. I also want you to know that parents exist who believe in their autistic children, as your father and family believe in you. We are here when you need our support. Just feel better, and take care of yourself. 

You have an army of friends here in internet land. We love you and want to support you speaking out in your own voice about anything you want and being heard. 

Best wishes,

Kerima

Until the Murders End

This is the last article I'll be posting for awhile. I've tried for over a year to write about this topic, but each time I've broken down. I decided to fight the sadness because I just don't have the time to continue to be silent on this. Tragedies keep happening. 

Time to explain the scrolling names at the top of my blog, and why I am listing murder victims and how they died. 

Someone commented recently that they didn't want to participate in the annual day of mourning for disabled murder victims. "I prefer to focus on happier, positive things", they said. Don't we all? But when we turn a blind eye to injustice it does not go away. It worsens, escalates. When people who consider themselves "good people" ignore injustice they enable it. Sometimes, you have to stand up for what is just, by reminding people infamy exists, and its victims are waiting to rest in peace. 

The murder of Autistic children by anyone has always upset me. I don't want to hear any excuses made for anyone who has committed such an act because my job as a special needs parent is not easy either. My son has a great degree of impairment and historically, little or no supports. He is, "like your child" if people must have that trope. I have enough respect for him as a person not to spend my life complaining about being his mom because I am one of the reasons he was born. I own my part in his coming into my life. He was, and is, a wanted and welcomed child. It is no fault of his own he nearly died on his first birthday from a deadly flu despite being vaccinated. His great challenges are not his fault. He is a heroic person. I could not be as patient, loving, or understanding as he continues to be despite the abuse he has suffered in two school placements by people who presume he is not human and is not worth their trouble. His daily perseverance in the face of overwhelming challenges to be independent is staggering. I am not half the person my son is. I am over 50 years old, and I have yet to meet someone like my son. 

So when someone takes someone like my son, a human being fighting for their own place in society, for the right to be counted as human, to be independent, to overcome their impairments, and snuffs out that light, it is as if I've been stabbed. It kills something in me. The grief is personal. 

 I want this to end. All of us want that. I think that it can only end if we do the following:

1. Remember and honor the victims. Thus the scrolling marquee atop this blog. I don't want to forget them. Ever. I'll update this post to add other sites and pages open for people to discuss and post on this topic, made to honor the dead and fight for the living.

2. Educate ourselves, then spread the word. Silence kills. It is not ok to call murdering a person a "mercy" because they are disabled. No one has the right to take a life that is not their own. How sad that people have done murder in the name of fighting for the unborn, but when those same people see that these babies are born disabled, they somehow feel it is fine to even consider dispatching them from the world. Disabled people have apparent challenges that are many times visible. Typical people can hide challenges. That doesn't make typical people superior. It just makes them different.

3. Remind every care provider, professional, and parent that the murdering a disabled person is a hate crime.  Some parents hesitate. They are afraid of scenarios where they might be the parent in trouble. Wow. Stop that. If your mind is going there, if you are that stressed, depressed, overwhelmed, run and get help. But don't support murder because you are afraid you might be the next parent locked up for harming your child. There is a qualitative difference between needing respite from care providing and committing murder.

4. I understand some families have agressive adults, or children or adults needing intensive supports and round the clock care in their families. If you cannot manage your child, continually seek professional help. Please do not listen to any employee of the system who tells you the short cut to group home placement is calling the police and using domestic disturbance calls to document your loved one is aggressive. Or that euthanasia is what your loved one would want if they could tell you. Probably the largest number of deaths from catastrophic encounters with law enforcement occur because families are told to do this to get their adult placed in a residential setting. And the right to take a life in your care is not yours.

5. Save lives. Be an active neighbor, a mindful witness, a concerned friend. If a parent, care provider, educator, or staff member confesses they are depressed, suicidal, overwhelmed, help them get help. Help them by making phone calls, bringing meals, raising money for respite, or positive behavioral supports that can help the whole family cope. If nothing else. advise they consider a compassionate removal of their loved ones into the system. But please, please, do not ignore cries for help.  And respite works two ways. There is the concept that care providers need respite. But more often than not, regular respite activities for disabled loved ones are welcomed by them as well.

So the victims will be on display on this site this Autism Acceptance Month, maybe longer. Because new murders keep happening . And they won't stop if we avoid speaking of it for more pleasant things.

In Memory of Robert "Ethan" Saylor, 26,  Steven Simpson, 18, and all those who came before them.