Tuesday, November 10, 2015

Abusive and Murderous Care-taking does not Evoke Compassion

A simple Google News search will turn up hundreds of results of abuse, neglect, and filicide (the murder of a child by a parent). Doing this search is not for the faint of heart. If you want to feel real pain for the suffering of children, by all means search away. The following are some snippets for which I am issuing a huge trigger warning; the details are highly disturbing.
  • Rachel Ball pleaded guilty to criminally negligent homicide, two felony drug counts and a misdemeanor of endangering the welfare of a child after her toddler, Kayleigh, died from drug exposure to cocaine and heroin in February 2015. Ball admitted to watching her boyfriend physically abuse Kayleigh, even leaving him alone with Kayleigh at times to do so.
  • In December 2014, Lindsey Nicole Blansett waited until midnight to enter her 10-year-old son Caleb's room with a rock and a knife. She hit him over the head with a rock and stabbed him seven times until he was dead.
  • In what is considered a family effort, Mary C. Rader and her parents Deanna and Dennis Beighley nearly starved her 7-year-old son to death. Children's Hospital of Pittsburgh staff was quoted as saying this was the worst case of child neglect they had ever encountered. He was less than 20 pounds when authorities rescued him. He also suffered injuries from beatings he incurred and was held prisoner in the family home. His three siblings all were healthy and attended school regularly.

Are you sick yet? Are you angry yet?

  • In January 2014, 17-month old Lucas Ruiz was poisoned to death by his mother who injected hand sanitizer into his tiny body causing acute alcohol poisoning. His father, who had also been feeding the tiny babe rum, was quoted as saying their son "would be better off dead, and that he wished he (the child) would die…".
  • In 2013, 14-year-old Alex Spourdalakis was murdered by his mother and godmother. First they forced sleeping pills down his throat and when that didn't work his mother stabbed the teenage boy multiple times in the chest as he lay in bed. She then slashed his wrist, nearly cutting off his hand while the godmother killed the family cat.
  • In April of 2012, 4-year-old Daniel Corby was drowned in a bathtub by his mother. She filled the tub, put him in the bath and held him under until he was dead. She then wrapped him in a blanket and put him the backseat of her car.

Do you feel compassion for the murderers?

You must be shaking by now. I know I am. As a parent I cannot fathom how anyone could ever think to hurt a child, let alone their own. The last three examples, Lucas's, Alex's, and Daniel's stories are often met with public sympathy for the murders, however. I hope after reading these awful crime snippets you are complete aghast at how one could feel any sort of compassion or sorrow for the murderer. I hope that you instead are feeling compassion and sorrow for the victim and the people who truly loved and mourn that victim; not the selfish murderous parent.

But society has given some leniency to killing people who are different than themselves. You see, these boys all had some form of a disability. And so it is with ease that you will find articles that dismiss the murders as “mercy killings.” There is no mercy in murder. There is no compassion evoked by these stories. By accepting the mercy killing ideal, society promotes that  people who have disabilities, who are different, are worthless and burdens. 

This is unacceptable.

A list of murdered disabled people can be found here:

Wednesday, October 21, 2015

Defending Yourself (How Not to Apologize)

Backpedaling would almost be acceptable. I wish I could say that the Autism Daily Newscast backpedaled when editor went on to [non]apologize for the pro-bullying article by Karen Kabaki Sisto last week. Instead, Ms. Hill issued a statement defending the article while only apologizing for the wording used. In other words, the Autism Daily Newscast apparently stands by the idea that bullying is good for autistic children because it is a great learning experience. Apparently autistic people and those of us who actual give a damn about them just need not be so sensitive about it all. You know, lighten up, people! How dare we suggest that our children and friends be treated like human beings - with dignity and respect? According to Ms. Hill,
"No matter how much energy and resources we put into making it a safe place for ourselves and our children, Shit Happens." ~Roberta Hill
So there you have it folks. Shit happens. And it seems then that there is no need to discuss that the "shit" must stop, or that the "shit" is unacceptable or that the "shit" causes irreparable psychological damage. In fact, no. We need to accept the "shit" and not only deal with it, but turn the "shit" into something good. At least Ms. Kabaki Sisto alluded to turning lemons into lemonade; Ms. Hill expects autistic people and their families to magically turn "shit" into a sweet smelling life experience.

[addenda @8:55 pm ET] This apparently is not the first time Ms. Hill has misrepresented or offended the autism community. In February, she ran an editorial misrepresenting the views of the Autistic Self Advocacy Network. When called on her mistake, she denied any wrongdoing and refused to change the article. You can read the story here.

Ms. Hill needs to check her allistic privilege and the Autism Daily Newscast needs a new editor.

Hill, R. (2015). My Response to the Outrage from the Autistic Community Regarding a Published Article - Autism Daily Newscast.

Friday, October 16, 2015

Trash Talk: Bullying Edition

When you search for data in a garbage can you're bound to get, well garbage. This idea is, not surprisingly, common knowledge among pretty much anyone who deals with any type of information processing. Programmers have for years used the adage “garbage in, garbage out” when referring to code. It makes a lot of sense then when science progresses and casts away old ideas to the scientific trash bin, that we file this old information and replace it with the shiny new, more correct data. After all, science's ultimate goal is to get as close to the truth as possible. But then there are those who are seemingly stuck in the past. This week, a garish example of such garbage reared its ugly head at the Autism Daily Newscast.

This past week, the Autism Daily Newscast published a pro-bullying article by speech and language pathologist and self proclaimed behaviorist Karen Kabaki Sisto, M.S., CCC-SLP. In her article, Ms. Kabaki-Sisto outlined the perks of bullying an autistic child; that is, the benefits the autistic child and a family get when the child is bullied at school. If that were not enough, she went on to defend her article on Twitter and Facebook (though she carefully never linked to her own article on these personal sites) by basically saying it was all about turning lemons into lemonade. How...um...refreshing?

By her logic, we just cannot stop the bullies so we might as well get used to it and try to make the best of it; bullying is a learning experience. Since, there have been many analogies thrown at this scenario: rape, incest, murder, domestic abuse. One wonders if Ms. Kabaki-Sisto also feels these equally disturbing issues should be accepted as empowering experiences. You know, victims should actually be thanking their abusers for the PTSD. Really. In any case, you can read lots of responses as to why her dangerous assumptions are wrong at these links:


I began to wonder where Ms. Kabaki-Sisto got this very warped idea in the first place. I decided to do a little digging and ended up at her blog where I found numerous extremely outdated ideas about autistic people. One in particular was the idea that autistic adults had the minds of children.
“At the core of this argument is that for people of all ages with autism, the chronological or physical age of the person does not match the ‘mental age’ of their language, cognition (IQ; thought
processes), and/or emotional development.”
This is an extremely outdated view (like 1950s view) and in fact just wrong. It is now known that being autistic is not synonymous with having a low IQ. People on the spectrum tend to present with various levels of intelligence much like the rest of the population (Pickles, Simonoff, Chandler, Loucas & Baird, 2010). This timewarp does not seem to phase her, however. Throughout a lot of her writing, Ms. Kabaki-Sisto seems to want to infantilize autistic adults; that is, deny them the opportunity to be treated as adults.

Ms. Kabaki-Sisto also goes on to talk about forcing, physically if necessary, eye contact from autistic people. Not only is this known to be unnecessary, it can also be physically and psychologically painful for an autistic person. She defends her forced eye contact position stating that
...true feelings and intentions can only be seen when one looks at another’s face and body.

One might have guessed by now that Ms. Kabaki-Sisto has not been updating her research shelves because the latest data shows that eye contact can actually be detrimental to a conversation, especially if one is trying to be persuasive (Chen, Minson, Schone & Heinrichs, 2012).

So where is she getting all this old data from? This brings me back to my original thought of garbage in -garbage out. Ms. Kabaki-Sisto apparently gets her information from the garbage can. At the site where you can purchase her non-evidence based program (no efficacy testing has been done to date on her wares), you can find this little gem of a quote on her “Meet Karen” page:
“My persistence lead me to my speech-language department’s library. Of all the valuable information available there, the most influential item I found was - surprisingly - in the garbage can!”

Yes folks, you read it correctly – her information comes from the trash - old information that is no longer relevant. Concepts such like “Theory of Mind” deficits which has since become an extremely controversial subject and no longer presumed a deficit in autism spectrum disorders (Peterson, 2014), the idea that people on the spectrum also have severe cognitive delays or prefer child-like things from the early Kanner's autism years among many more questionable bits of misinformation. Oh, and of course lest we forget that bullying is a good learning experience for autistic children.

Science may not have all the answers, but I can guarantee you that using garbage as the basis for your “program” is not going to get good results.

Charman, T., Pickles, A., Simonoff, E., Chandler, S., Loucas, T., & Baird, G. (2010). IQ in children with autism spectrum disorders: Data from the Special Needs and Autism Project (SNAP). Psychological Medicine Psychol. Med., 619-627.

Chen, F., Minson, J., Schone, M., & Heinrichs, M. (2013). In the Eye of the Beholder: Eye Contact Increases Resistance to Persuasion. Psychological Science, 2254-2261. 

Karen's Straight-Talk. (n.d.). Retrieved October 16, 2015.

Peterson, C. (2014). Theory of mind understanding and empathic behavior in children with autism spectrum disorders. International Journal of Developmental Neuroscience, 16-21.

Tuesday, May 19, 2015

Language Matters

Stomp out…Combat...Fight against…Beat…Battle…these are the words of aggression and war. These are the words also commonly used to rally support to overcome illness. When we think of pervasive diseases such as cancer or diabetes, most do not question combating these deadly diseases. In these examples, aggressive and fear-based language such as dangerous, serve to motivate; fearful people are likely to contribute to research funding and hopefully engage in prevention activities. Here the use of aggressive language potentially helps makes positive change. When aggressive language is used to represent disabilities including mental health, the situation changes dramatically. 

When we use language that says we must fight against a dangerous mental illness or a disability we are telling the uninformed public that people who have these labels are dangerous. We are telling them that these disorders must be beaten and battled against in order to prevent vicious behaviors and violent crime. And when society cannot beat or overcome via a cure, it must find ways of preventing the public from the dangerously ill people. This is how the asylums began in the late 1700s. Most would agree we do not want to repeat this history.

This is not to say that disabilities and mental illnesses do not present difficulties to those who wear the labels. Clinical depression can be debilitating. Many anxiety disorders when left unsupported can lead to clinical depression which can lead to suicidal behavior. Other times, unsupported these issues can lead to substance abuse. In most cases, however, the danger is truly to the person experiencing the mental health issue. More troubling is that the person with the label is more likely to experience violence by the hands of someone not considered disabled. According to recent studies, people with disabilities are at a considerably higher risk of violent abuse than the general public. This means that it is more likely that a non-disabled person will act violently against a person with the disability label than vise versa. It is not hard to believe that our use of fear-based, aggressive language has a part to play in this trend. After all, what better way to beat dangerous mental illness than to start at home.

Language matters. There is a difference between “Fight to End Mental Illness” and “End Stigma about Mental Illness.”  There is a difference between “Mental Illness is Dangerous” and “Misinformation about Mental Health is Dangerous.” What we say and how we say it can be the difference between what the public believes and inevitably how people wearing these labels are treated.



Saturday, April 5, 2014

On Blue Light Bulbs

I'll never forget that moment.

We entered a major home improvement store as we always seemed to be doing as homeowners. It was early spring and the Autism Awareness campaigns were in full swing. My then pre-adolescent son saw it first. It was a sign encouraging customers to “Light it Up Blue” by purchasing blue light bulbs.
He said, “Look, Mom! They are celebrating Autism.”

His face changed as he continued to read on. The sign said autism was a “crisis.” It explained how proceeds would benefit Autism Speaks search for cures and prevention of autism.

My son understood the word cure enough to know it implied he was sick. He looked at me despairingly and asked why they thought he was sick. I told him what I believe – Autism Speaks is absolutely clueless about the life of an autistic person and people are fearful of what they don't understand. He looked puzzled. He wanted to know why they didn't just ask autistic people. I explained how Autism Speaks refused to allow autistic people to have a voice in the organization. He shook his head and said how wrong that was.

Then he asked me the question I feared. What did they mean by prevention? Why would they prevent autism? My head was spinning. How could I explain this to my beautiful, perfect child? I blurted out that they cannot prevent autism because it is not a disease, that this was just a way to get more money.

Though not the full story, I could not bear to tell him the rest - that Autism Speaks was heavily funding research that would encourage families to terminate pregnancies. That they were hell-bent on discovering genetic clues so as to advise families against becoming pregnant. That this heavily funded organization wanted to eliminate people like my son from existence through eugenics. That this billion dollar organization intended to find a magic pill that would change my son into something less than, not him.

My heart sank like a rock into the pit of my soul. My son was devastated and deeply hurt and once again, I could not protect him. We left the store that day without what we came for. And we left with a little less hope for the future of humankind.

Saturday, February 8, 2014

An Open Letter to a “Feminist” Blogger

Dear Feminist Blogger,

I couldn't help but notice you posted a very public Facebook status that sarcastically criticized a marginalized group of people. I couldn't quite look away when you said that people advocating for their own rights was called “jumping the advocacy shark.” And I certainly couldn't walk away when you continued to denounce a civil rights movement to which you do not belong.

No feminist ever said that men know better to determine what women need. That's outrageous to a feminist. But here's the thing...if you say that “you,” as a woman (mother, grandmother, etc), know what's best for a group to which you do not belong (even if your own flesh and blood belongs to that group), you have played the part of oppressor - like the sexist who knows what's “best” for you. You don't get to decide who is worthy of human rights. That's what sexists do.

As women, we belong to more than just ourselves. We intersect with LGBT, racial minorities, those with disabilities, and more. Women will never be treated equally as long as other groups are oppressed.

“Women will never be
treated equally as long as
other groups are oppressed.”

If you decide to join the oppressors by claiming to speak on behalf of a marginalized group, well, you're not really a feminist after all. Please take your toys of privilege elsewhere because we, in the feminist sandbox, have a lot of work to do.



  • is not about burning your bra.
  • is not about refusing to shave your legs or wear makeup
  • is not about encouraging women to be pro-abortion
  • is not about ruling over man


  • is about autonomy and equality
    is about leaving decisions about our own bodies up to the individual
  • is about equal rights for all people, not just women
    having the same rights as the most privileged group

Saturday, January 4, 2014

Why the Autism "Community" Can't Get Along

The idea of a “community” in autism activism is a farce. This is because many who are deemed to be part of this community have opposing goals. From my experience, three completely different groups exist. Though there is crossover between some of the groups, the ends are polarized and cannot unite. Below is my perception of the groups, though more groups might exist that are less well-known.

Vaccine-injury Conspiracists

This group believes that autism is a preventable injury. Though no science supports this theory, they hold on to bogus research claims and snake oil. The bulk of this group believes that the pharmaceutical industry has created dangerous vaccines as a way to make more profit (by using cheaper but harmful additives and ingredients or creating unnecessary vaccinations). Others take the theory a little further and believe that the industry is purposefully poisoning the people. Regardless of how extreme, this group tends to believe in pseudoscience and promotes sometimes dangerous “snake-oil” treatments in attempt to cure autism. Groups such as Talk About Curing Autism and Age of Autism are examples of this group's mentality.


This group consists of those who seek to eradicate the possibility of new autism births. They seek to find a prenatal test that can identify the likelihood of having a child on the autism spectrum so that families may be given the opportunity to terminate an at-risk pregnancy. They also seek to find ways to keep the so-called disorder from happening – presuming autism is a preventable defect (think Fetal Alcohol Syndrome). They hope to find a “cure” for those they believe are “suffering with autism.” They throw millions of dollars into “awareness campaigns” that stigmatize those who are on the spectrum. They also fund research that might further their goals. A good example of this group is Autism Speaks.


This is where the self-advocates, often identifying as autistic, tend to flourish. This group believes that disability is natural and that autism is a neurological difference and a variant of human diversity. This group vehemently opposes that autism should be prevented or cured. Led by disability activists, this marginalized group has been compared to the civil rights movements of the past. Their motto is “Nothing about us, without us!” This group promotes “acceptance” rather than awareness. Most of this group consists of those identifying as autistic. In the recent past, however, many non-autistic (aka allistic) allies have joined in support of the neurodiverse message. This group has been notoriously labeled by other groups as “too angry.” Others have attempted to discredit the movement by insinuating the members are not truly disabled and are NLMC (not like my child). A couple examples of this movement are the Autistic Self Advocacy Network and the Autism Women's Network.

You may already be able to discern why these groups cannot converge. Here are a few ways they do and do not.


Eugenicists and Conspiracists
These two groups agree that autism is potentially preventable and treatable. Both tend to infantilize autism as believing it only affects children (somehow magically disappearing in adulthood).

Neurodiverse and Eugenicists
There is very little agreement between these two groups. Both groups do support scientific research about autism but the support for research focus is very different.

Conspiracists and Neurodiverse
I am at a loss to find any common ground with these two groups.


Eugenicists vs. Conspiracists
The eugenicists represent legitimate (albeit ethically questionable) science. The conspiracists do not.

Eugenicists vs. Neurodiverse
The neurodiverse are strongly against cures and prevention for autism and consider autism a natural human variant. The eugenicists are strongly for cures and prevention and consider autism a disease or affliction. Eugenicists seek social awareness while the neurodiverse seek social acceptance.

Neurodiverse vs. Conspiracists
Conspiracists believe that all cases of autism are preventable injury and fight to stop this so-called injury. They promote treatments that are often harmful and dangerous. Neurodiverse do not support questionable treatments for autism nor do they support the idea that autism is caused by a preventable injury.

It is probably not so hard to see why there is little community behavior between these groups. It is unrealistic to believe that they will ever converge because they simply do not share the same goals. Community generally refers to common ground. It is not only unrealistic to infer we should all "just get along," it is offensive. What most really mean by that statement is that the marginalized group should be silenced.

I won't deny that there are people who do not fit neatly into any of the three groups. Often we hear those who say they support the neurodiverse message but still seek a cure for some. These statements are in disharmony and make little sense. Realistically, these people are supporters of the eugenics or conspiracists groups but do not want to identify as such. You simply cannot be for finding a cure for autism and at the same time believe autism is a natural part of human diversity.

For those who read my blog, it is probably easy to see that I am an ally to the neurodiversity movement. My belief is that those who are labeled - are living with a disability, should be calling the shots. I believe that people on the spectrum should have a voice no matter whether their voice is through augmentative communication or their vocal chords. I cannot possibly imagine that I, an onlooker, should have more say than this marginalized group of people. I don't get to determine how they should think and feel anymore then they do for me. This is their battle and I proudly stand beside them in support. As a parent, I stand beside my autistic son and let him be my guide.