Saturday, March 1, 2014

Murder is murder.

Note: Before I get called a "bully" or a "vulture" (which are two of the kinder names I've been called by angry readers), please note that it is not "bullying" to have an opinion on an issue, even if if it differs from yours. It is also not bullying to discuss these issues openly, to advocate your differing point of view, to use harsh or even crass language or a strong tone. To learn more about what constitutes real bullying, please refer to your friends Wikipedia or Google. Using this term as inappropriately (and ironically) as some of you do actually demeans the very real bullying experiences that some of our ASD kids, and other marginalized populations, are facing every day. Please consider this in how you choose to respond to me and to others. 


In my last two posts (part 1 and part 2), I've begun to explore the issue of violence towards Autistic children.  As I explained, the factors leading to incidences of extreme violence generally involve complicit behaviours from all levels of society through. Parents, schools, the medical system, 'advocacy' groups can all contribute directly or indirectly to the type of dehumanization tactics which contribute to the belief that violence towards Autistics is justifiable and understandable.

I would like, in this post, to talk about a specific line of reasoning used in the tacit acceptance of violence towards Autistic children.  This is the line most frequently invoked by parents, both perpetrators and supporters, who claim justification to these incidences of criminal activity:

"We need to talk about why this happened. What happened to this child happened because of lack of supports for the parents of children with autism."

There are two distinct arguments made in the statement above: The first is that "why" this happened is not being adequately addressed. The second is that additional supports would have saved the child's life.

I would like to address both of these arguments as being false.

To do this, I'm going to use the very specific case study of Issy Stapleton and her mother, Kelli, who has been charged with the attempted murder of her daughter. You can read more about the history of their case here.

I understand that in doing so, I'm about to burn just about every bridge I could ever have with the "Autism Parenting Community." I understand that I am taking on a very heated topic as many people in the Autism Community knew and loved Kelli dearly. These same people are imploring us for the need to have the "tough" conversations about supports and the events that lead up to this. I am answering that call. Conversations are two way streets, and I suspect many will not like what I have to contribute to the dialogue. However, I hope that some will seize the occasion to engage in a genuine conversation. It should also be noted that all my quotes from Kelli have been taken, in full, with links to the original articles and dates of publishing. 

What makes Issy's case a unique one is that the mother in question was a prolific and beloved "Autism Mom" blogger. Her blog, The Status Woe, was a staple for many parents who are navigating the challenges that arise with parenting a child on the Autism Spectrum. Stapleton described herself (in "bullet point" format) as a talk show producer, humorist, public speaker, IMDB-credited producer, Molecular Biologist, Coach's wife, and Autism mother.

She did not describe herself as a person who would attempt to kill her daughter, largely because I suspect she never contemplated she would find herself capable of doing so. Or, at the very least, she did not do so publicly.

Before looking at some of Kelli's writing, I would like to offer up a definition for you to consider. Please take the time to really read and consider this term (emphasis is mine):


         PSYCHOLOGICAL ABUSE (http://www.vchreact.ca/read_psychological.htm)
Any act, including confinement, isolation, verbal assault, humiliation, intimidation, infantilization, or any other treatment which may diminish the sense of identity, dignity, and self-worth. This is sometimes called emotional abuse. Some researchers refer to it by formal terms such as "chronic verbal aggression". Psychological abuse can make the person feel "less of a person". It diminishes the person's sense of identity, dignity, and self-worth. Abused people often find that psychological or emotional abuse is the most hurtful form of abuse. 
Psychological abuse may make a person fearful or cause the person mental anguish. This may be done in several ways, including by:
  • making the people uncertain about themselves and their abilities (lowering their self esteem),
  • threatening some form of violence, or
  • threatening to abandon or neglect the person.
I would like you to bear this definition in mind throughout this post.

I am going to begin with "WHY" this happened.

The answer is, in my estimation, as simple as it is tragic.  This happened because Kelli Stapleton, and the medical system that supported her, engaged in systematic child abuse that escalated to the point of attempted murder. That this abuse was validated and supported by the "system" does not negate the very real fact that the type of "treatment" received by Issy Stapleton at the hands of her medical professionals and mother fits the textbook definition of child abuse, specifically in terms emotional and psychological abuse

For those who know and support her, Kelli Stapleton's blog tells the story of a mother pushed to brink with desperation and fear, pushed to violence by a system that was determined to devastate her and her family, broken by years of chronic physical abuse… You can find countless articles and blog posts dedicated entirely to the argument that Kelli Stapleton, while technically responsible, was not really responsible for what happened...

But is this really the whole story? Does this, and the other stories like it, just boil down to a systemic problem with lack of supports?

Or is there an even more dangerous problem that we are failing to address? 

Kelli's blog offers fascinating insight into her world as an "Autism mother".  She describes in vivid detail the therapies and treatments options that she pursued with her daughter.  She chronicles Issy's life and treatment plan, and speaks in great detail as to the challenges that can face parents of a child with a disability.  She put up pictures with charts and graphs depicting her child's medical history. She uploaded videos to show the world just how aggressive and difficult her life with Issy could be. She confessed that parenting an Autistic child was the opposite of parenting a neurotypical one, explaining that:
"If she is sad about something I should NOT go and try to comfort her.  She gets no comfort from it and I’ll likely get hit.
If she wants something I should not give it to her.   She has to earn everything.
If she is sitting quietly for long periods of time I should not try to talk to her.  She’ll get mad and hit me.  I remember feeling that way about my mom and I’m NOT a child with autism!  Hahaha!  Soooooo totally normal?
If I have to tell her “no” and I feel badly about it.  It does no good to explain.  Once we wanted to go to the fair.  We got there and it was closed.  I said how sorry I was and it was a bummer.  I used my (sincere) but sad voice and got hit.  Just saying “no” and moving on is better.
It’s generally better to avoid her.   I need to step in when I know I’m going to be successful and not get hit.  We have 14 years to re-shape.
Going up to her at any given time and hugging her and telling her I love her. Yea, that doesn’t thrill her.  So am I doing it for me?  Or her?  I don’t want to spark an aggression so I’ll just love her from afar! "
(Kelli Stapleton, "Some Personal Thoughts On My Training", The Status Woe,  August 27, 2013)

In this passage, Stapleton describes how she has been taught to:
  • Withhold affection and comfort 
  • Withhold communication and age/cognitively appropriate levels of self-determination
  • Actively isolate and distance herself physically and emotionally from her child 
  • Avoid physical contact and any outward signs of love and affection.
This, of course, on top of the fact that Issy's school was a residential one, where she saw her mother only once a week. 

In short, Kelli Stapleton was given the medical advice of completely severing any outward representation of an emotional connection to her child. She could love her from afar, in her heart and mind, but was discouraged from showing that love in any tangible and meaningful way which, unless Issy is a psychic, would be the only ways in which her daughter would be able to receive and understand it. 

The next quote describes her first parent training session with Issy's behavioural team. Issy was becoming increasingly agitated and aggressive throughout the session:

They are true professionals.  Carly kept asking if I was all right.  I was.  She was bleeding and her adrenaline was kicking in.  As professional as she is, I can tell she isn’t used to getting attacked.  I feel so horrible and responsible for Issy’s behavior.
I just want to mention that they never got mad at Issy.  Never yelled or screamed at her.  Just reminded her that she could earn tokens for ipad time when she had quit hands and feet.    Did I mention that they are superheroes?!
Kelli Stapleton, "Kelli (mom) implements the behavior plan. Success does not ensue", The Status Woe, June 11, 2013.

Another quote describing her daughter's physical appearance as making her "hard to love." 
Well, this isn’t the first time I’ve found myself on the wrong side of popular.  I have a daughter firmly planted in autism’s “hard to love club”.
She is well beyond “cute toddler” stage; where she had bright blue eyes, ringlet curls, and deep sweet dimples.  And her behaviors could be passed off as “age appropriate”.
She is a teenager now.
She is overweight.  It isn’t her fault; we had her on medications that caused her to gain weight.  A lot of weight.   But there isn’t anything endearing about an overweight teenager rampaging through a house or classroom.
She could care less about hygiene.   It’s not uncommon to see her with wildly unruly hair, food in her teeth, stains on her shirt, or even smelling of body odor.   Of course, her dad and I do what we can, but we aren’t with her every minute.  At school, she may get food on her face.  Sometimes it gets wiped off, sometimes not.
Kelli Stapleton, "Autism's Hard to Love Club", The Status Woe, April 5, 2013 

Unhygienic. Uncombed, unkept, smelly...

Are these acceptable ways to speak of a child? Of course not. We have countless books and even more academic research that very clearly indicates that these types of treatments would be unquestionably emotionally and psychologically damaging.   In fact, research is now showing that social deprivation (including affection deprivation) and negative reenforcement can be so damaging that it can prevent proper brain development in young children.

But, we aren't talking about "a child". We are talking about a child With AUTISM, that evil beast that has come to steal your child's soul away.

So, let us revisit that earlier definition of Psychological Abuse:
"Any act, including confinementisolation, verbal assault, humiliationintimidationinfantilization, or any other treatment which may diminish the sense of identity, dignity, and self-worth."
  • Confinement- CHECK.
  • Isolation- CHECK.
  • Humiliation- CHECK.
  • Intimidation- CHECK.
  • Infantilization- CHECK.
  • Treatment that may diminish the sense of identity, dignity and self worth- CHECK
Allow this to sink in for a moment or two….Is there really any other way to describe the treatment that Issy was receiving than to call it systematic and chronic psychological abuse?

That it was part of her "behaviour plan", and executed by "superhero" medical professionals, is simply an indication of the bigger problem at play.  Their strategy was clear: Break Autism, by breaking Issy's spirit. 

At the beginning of this post, I said I was going to discuss "supports"- or at the very least, the cry for supports coming from desperate parents everywhere.

Do Autistic children and adults need supports? Without a doubt.
Do families with Autistic children need supports? Unquestionably.
Do schools and communities need support to provide the accommodation necessary to meet the needs of all children, regardless of ability level? Absolutely.

All children should be provided with the tools they need to thrive and have a fabulous quality of life.

I do not know a family with an Autistic child that does not need additional supports and tools in place to ensure that the needs of every member are met.

For my son, those tools include some work with a speech therapist, some work with an occupational therapist, a specialized early-learning program where he can interact with other peers with complex needs. These are the tools delivered by specialists, who are highly trained in their field of work.

But, like all tools, every one carries a risk. So the team is driven by my husband and I, and we are extremely careful in how we apply therapy into our child's life. Our team members have received clear instructions on language, philosophy, and how we want Autism to be discussed. We even formalized a document, presented it to the team, and had it included in his IPP. (Read about that here: On Setting A Tone…)

So, no- I am not against supports. Supports are a good thing. All children- all PEOPLE- should have the supports they need to thrive in the world.

But what kind of supports do we need? And what are the goals of those supports? And whom exactly should the supports serve? These questions seem to never really be fully probed by the parent-advocates.

And yet, these are the tough questions we need to ask in the wake of what happened to Issy Stapleton.

Because I can tell you this much: Kelli Stapleton's idea of supports, as defined by her writing, sure doesn't jive with mine...

We need to begin a dialogue about these questions.  We need to ask ourselves, as parent, what is it that we mean by supports? Do we mean residential school for every Autistic child? Or do we mean a model where professionals work with parents to teach them the skills and accommodations that their family needs to help every member thrive?

And, perhaps most importantly: Would any level of "support" have prevented the assault against Issy Stapleton?

The problem with the term "support" is that it is dangerously broad- so much so that there is no way it can actually keep up with parents' growing expectations.

In Alberta, Canada, where I live, the list of government-funded supports is nothing short of remarkable.

We are provided with up to three years of Program Unit Funding (PUF) which provide for fully funded (including bussing) early education services for every child with a disability.

We have Family Supports for Children with Disabilities (FSCD) which pay for key services like Respite Care, Family and Child counselling, assistance with costs relating to the disability (clothing, footwear, etc), assistance with costs of medical/therapeutic treatment (parking, mileage, meals for out of town appointments, etc), and Specialized Services provided by a multi-disciplinary team of Speech and Language Pathologists, Occupational Therapists, Physical Therapists and Psychologists to help work with severely challenged children on every day life skills.

These are provided free or mostly free to families with children requiring systemic supports.

Yeah- kind of breaks the mind, doesn't it….I understand if it makes you want to move here...a lot of Autism families have, in fact...

And yet, even here- in the haven of all things Autism- this happened. An Autistic child, killed for no reason other than being Autistic.

And again, that ominous word "supports" is used as a quasi-justification for the murder of an innocent child.

So when it comes to the plea for more "support" as justification for the attempted murder of a child, I call bullshit.

The fact of the matter is that no amount of speech therapy, physical therapy, occupational therapy, or even psychological therapy would not have helped kept Issy Stapleton safe.

There are no "supports" out there that could have protected her.

Because those aren't the kind of supports that Kelli Stapleton was looking for when it came to her daughter.  Those kinds of supports are there to help families work through their challenges and find real, every day coping mechanisms that allow them to thrive. They are there to prop up those who understand that the weight of the responsibility for caring for their children is (and should be) on their shoulders. They are there to serve the needs of the child, not only the needs of the parents.

But they do not work towards eradicating Autism.

They do not claim to have a "cure."

They are not promoting that they can help you "recover" your child.

They are not there to make promises to the parents about how much easier things are going to be.  In fact, our services are fundamentally principled on the idea that all therapies should be parent driven.

The government is not going to "fix" what is "broken" with your child, because there is nothing to fix.

Your child isn't broken. 

Yes, there are very real conversations that need to take place about family supports. Sadly, these are being invoked as red herring arguments, conceived to detract us from the very real situation at hand.

What happened to Issy Stapleton, and countless children like her, isn't about a lack of supports.

No amount of "support" will convince a parent that their child is a human being who has the right to live a rich and fulfilled life.

It is about a society's obsession with "curing" and "fixing" and "recovering"- at any cost, including compromising the child's health and safety.

It is about a medical system that renounces neurological differences in the same way that it used to renounce gender differences, or claim that race and sex dictated intelligence and reason.

It is about a justice system that shows more compassion and empathy towards adults who are in control of their actions than children who are not.

It is about a mother who made the conscious decision to attempt to take the life of her child as well as her own, because her child didn't deserve to live and she didn't want to deal with the consequences of killing her.

It is about a child who had no other recourse, no other option, but to resort to violence.

It is about "self-defense" being spun into "aggression."

It is about blaming the victim.

It is about this child. And this child. And this child. And this child. And this child.

It is about the systemic process of dehumanizing any child who is different, to the point where the very value of their lives is called into question at every social level.

It is about murder.

**********

NOTE: If you, at any time, feel that you are incapable of caring for your children and/or are at risk of harming them or any other human being, call 911. Get help. Immediately. 

4 comments:

  1. Yes, to all of this. Thank you for writing it.

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    Replies
    1. I agree. This is really well written and speaks the truth.

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  2. As a psychologist in training, I would say that everything that people bring up to defend Kelli Stapleton applies just as much to many parents who kill non-disabled children. Especially those who attempt or commit suicide at the same time. They're pretty much all desperate people under extreme stress who use bad coping strategies and then reach the end of their rope. But when the victim is non-disabled, people are solidly on the victim's side.

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