Dear Karla

I also have data on filicide but not specific to that population.

I'm attaching anyway the paper and I hope it would be of your interest

Best regards

Lavinia Barone

You can have a look on :

An Overview of Filicide

Sara G. West, MD

Psychiatry (Edgmont)

Feb 2007 4(2) 48-57

Dear Karla; Good luck with the search; it is of considerable interest to me professionally, but I don't have specific data sets to recommend. Would you care to correspond about the topic? Many thanks to Dr. Barone for her work and including the article. Best, Paul.

Thank you so much Dr. Barone; I appreciate your work and your answer! And thank you, Dr. Gronnerud. Are Canadian filicides reported in terms of victims who are disabled versus non-disabled?

As far as I can tell, the United Crime Report does not articulate whether the victims of filicide were disabled or not.

I've also written to researcher Elizabeth Yardley in the UK, but haven't heard back. 

I have been a participant observer in the autism community for a number of years as I've worked on my thesis on social skills training programs. I have seen an increasing number of filicides and filicide/suicides (and failed attempts) of autistic children by their mothers. This is of course a painful situation, but what makes it more painful is that media tend to portray these murders as understandable, and in some cases, media stories don't even give the name of the victim, but include quotes about what a long suffering parent the murderer was. No autistic voices are included, and reporters often interview other, entirely unrelated parents of autistic children who think their children are burdens.

This is of course a function of the way disabilities are framed -- not as natural occurrences that require different parenting skills, but as burdens and tragedies.

However, when autistic children are murdered, an exceedingly dehumanizing rhetoric springs up, and it's stunning to watch it.

This is a very complex situation, and the framing of autism as a disease (it's not) and a tragedy (it's not) is very effective as a fundraising tactic, but is seemingly having very negative and sometimes deadly consequences for autistic children.

My hope was to get clear data on the numbers: What are the rates of filicide of disabled children versus non-disabled children? And are autistic children murdered in higher percentages in that subset of disabled child victims?

Hi, Karla; so, you locate professionally in the autistism community; your analysis of the social context that spins around autism generally, as well as when the family kills, is striking. I will try to obtain some data on the disabled/autistic vs. non-disabled demographics for Canadian infanticides. This is likely to take me some time; you're welcome to email me as well: [email protected] .

You are only likely to get reliable data from Scandinavia, where there are comprehensive population registers.  Someone needs to match up the disabled and homicide registers.

I tried looking at this some time ago and only found a couple of studies and none that were epidemiological in nature. There is a Japanese study of causes of children with cerebral palsy and the percentage attributable to homicide was very high, I believe about 25% of deaths. There is an article on filicides of children with autism but but it does not really deal with incidence rates. There is a thesis on fatal and near fatal child abuse data for one of the western states (Washington, I think). It found that among these most severe cases of deadly child abuse most of the kids had preexisting disabilities. In general, there is good data on child abuse of children with and without disabilities and the gold standard is "Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies" Lisa Jones, Mark A Bellis, Sara Wood, Karen Hughes, Ellie McCoy, Lindsay Eckley, Geoff Bates, Christopher Mikton, Tom Shakespeare, Alana Officer, Lancet, 2014. They concluded that for all types of maltreatment and all disabilities, children with disabilities are 3.68 more times likely to be abused. The rates for specific types of disabilities (intellectual and psychiatric) are even higher. While Resnick doesn't specifically deal with the issue of disability, his model of altruistic filicide is particularly relevant. He points out that many, perhaps most, parents who kill their children do so after they convince themselves it is the best thing for their child, thus they convince themselves that murder is an act of love. This cognitive distortion is easier for parents of children with disabilities who may convince themselves that they are freeing their children from suffering or even sending them to heaven where their disabilities will be cured. We published a couple of papers that touch on these issues but they do not contain the kind of data you are looking for.

Rosen, R. S., Armbrustmacher, V., & Sampson, B. A. (2003). Mortality in cerebral palsy (CP): the importance of the cause of CP on the manner of death. J Forensic Sci, 48(5), 1144-1147. found 25 autopsy reports from New York City for individuals with cerebral palsy for which the manner of death was reported and 2 were homicides, 18 natural deaths, and the remainder were accidents or therapeutic complications that might have potentially concealed additional homicides. It is a small sample but a very high rate.

It should be pointed out that some of the association between disability and homicide is because child abuse may be the cause of the disability and later result in death.

Lucardie, R. & Sobsey, D. (2005). Portrayals of people with cerebral palsy in homicide news, Developmental Disabilities Bulletin, 33 (1), 99-128.

Lucardie, R. & Sobsey, D. (2005). Homicides of people with developmental disabilities: An analysis of news stories. Developmental Disabilities Bulletin, 33 (1), 71-98.

Thank you so much, Dr. Sobsey -- this is a treasure trove, and also very disheartening. However, it confirms what many of the autistic and disability rights activists I've been studying are saying about the wholesale devaluation of disabled lives.

Karla, I think they are pretty much correct about the devaluation. The key to understanding violence is not motivation so much as disinhibition. Leading bioeticists such as Joseph Fletcher in the 1970s and Peter Singer today argue that people with severe intellectual disabilities are "nonpersons, who lack moral status. In Professor Singer's words, "Killing a defective infant is not morally equivalent to killing a person. Sometimes it is not wrong at all." Considering that these are our leading ethicists, it is not surprising that many people can convince themselves that killing children with disabilities is understandable, justifiable, or even heroic.

Yes. Disabled lives seem to teeter on the edge of multiple intersecting narratives about the worth of persons. For instance, I was just listening to a beautiful Christmas carol ("Mary, Did You Know?") with horrendous lyrics about how, when Jesus is present, "the blind will walk, the deaf will hear, the dead will rise, the lame will leap, the dumb will speak...." 

Those lyrics were both painful to hear and also very revealing about the underlying ideas most people unconsciously hold about the value of disabled people — and that thinking infects so much of our ideology about illness and disability. It infects research, education, treatment, social services — everything. Especially in autism research, much of which is unrelentingly deficit-framed, medicalized, and frankly dehumanizing.

I’ve been thinking about deficit framing very deeply, as I’ve also been studying media stories on parents who murder their disabled children — and many of these parents (if they survive) openly state that they hoped the children they killed would become cured in heaven.This idea that holiness erases all of the normal illnesses and disabilities that all living things experience was clearly a wish that has formed a central part of many spiritual traditions. But it’s a wish with very nightmarish consequences.

There was a story last week about a 10-year-old autistic girl from Michigan who was killed in an auto accident. Her parents forgave the at-fault driver of the other car because their daughter was "released from autism." And that was the headline of the story. The girl, Faith Hall, was described as:

'"smiley." She was sweet, encouraging and witty. "She really was a friend to everybody. ... She was obviously kind of quiet and reserved, but she just really had a tender heart and cared for others in her own unique way,"

But apparently, violent death in a car accident is preferable to living as a smiley, sweet, tender, and witty autistic girl. My word, human beings, we have a long way to go. These are the Dark Ages.

http://www.mlive.com/news/kalamazoo/index.ssf/2014/11/faith_hall_vicksburg_crash.html

Karla,

In considering the underlying societal attitudes about disability, there are distinct hierarchies. For disabled people, divisions exist between and within levels of ability; physically disabled people are on one level, intellectually impaired on another, and those with mental health issues on yet another, grudgingly acknowledged, plane. These divisions are reinforced by available funding and services.

Throughout all these levels of disability lurks the fundamental prejudice that exists in regard to the etiology of the disability. People who led average, active lives before becoming disabled warrant society's sympathy and concern; common expressions of grief and language such as 'tragedy' or 'suffering' are painful and insensitive to those who have had to navigate such limitations (and more) since birth. For those whose lives intersect throughout the divisions - which is usually the case with autism - this public perception is difficult to ignore. It is pervasive and extremely personal.

This seems to be the 'just world' phenomenon; most people want to believe that disabled people must 'deserve' their fate. Mothers of young disabled children  have reported being asked repeatedly by strangers about what they could have done wrong during their pregnancy. Society seems to be obsessed with needing a clear cause and effect, which always leads back to the undesirability of disabled people and the hope of eradicating them. It is much more subtle, but the ideology of eugenics persists. 

Professionals, researchers, media, and often parents themselves have presented childhood disability as more of a tragedy than it really is. This is not to say that it does not have significant challenges for the children affected and their families but research suggests that people with disabilities enjoy their lives about as much as people without disabilities and that genetics and early learning has more to do with happiness than disability. For example, Brickman, Coates, and Janoff-Bullman (1978) did find that people who won the lottery were happier than people who were paralyzed in accidents, but the difference was small AND in both groups the level of happiness before these events predicted level of happiness after the events. Most importantly, people who won the lottery took less pleasure in life's simple pleasures than those who were paralyzed in accidents.

We found that although parents of children with disabilities (Socrgie & Sobsey, 2000) reported significant challenges, they also reported benefits as a result of the experience. Although the frequency of these benefits varied in different samples of parents, the results have been replicated repeatedly.

As the father of a young man who was born with severe, multiple, progressive disabilities, I can personally testify to the challenges but also to the benefits.

 " research suggests that people with disabilities enjoy their lives about as much as people without disabilities"

If this is genererally true, then why did the British Public contribute many millions of pounds to the recent Children in Need Appeal?

One of the most important factors in determining a disabled person's quality of life is money,. Financial support levels the playing field considerably. The costs involved for a disabled person to enjoy some of the same pleasures as an able-bodied person are prohibitive.

I would suggest that the ability to avoid pain and discomfort is highly significant in determining a person's ability to enjoy life; for a disabled person, this often means money. Splinting, massage/osteo/OT therapy, nutritional supplements, special diets, etc. are basic essentials. Added to this type of expense are costs such as special transportation, adapted technology, and the cost of paying others for services one cannot perform for oneself.

Everything I have mentioned is not covered by our Canadian health care system. Being disabled and wealthy is a very different experience from being disabled and poor. Those fortunate enough to have extended health benefits may enjoy a higher quality of life than those struggling to provide their children a pain-free existence. I am not familiar with the specific goals of the Children in Need Appeal you have mentioned, but if it is directing funds to benefit disabled children and the UK government spending is similar to ours, it is sorely needed.

Anthony, you make a good point! Children with disabilities do have some real needs and I do applaud people who provide support. Having a decent wheelchair or proper medication or physical therapy can make life easier. In addition, the increased caregiving demands of children with severe disabilities often forces two-income families to become single income families. However, many attempts to get the public or the government to assist families require or encourage individuals and families to paint their lives as pathetic in order to receive help. Similarly, there is evidence that people living in poverty are about as happy as people who have wealth. This does not mean that there is no point in trying to improve their living conditions.

Thank you for these answers. I also have multiple disabilities, and an adult son with multiple disabilities who is on laughably paltry public assistance that requires our continued and often daily support for him, and I agree that we are as happy and/or unhappy as nondisabled people seem to be. I also agree that money softens everything.

Something that has been extremely beneficial for me in my long study of the autism community is the work of the neurodiversity advocates. How we frame our disabilities to ourselves and each other -- and how we allow our disabilities to be portrayed in media -- has everything to do with how we can learn to carry them.

I am now claiming my disabilities in an identify-first way rather than hiding them or skirting with person-first language. For instance, I am dysnomic and dysgraphic -- I am not  "person with" either of these conditions; they are as much a part of me as my green eyes are. 

This identity approach has also helped me to go to my son and apologize for the times that I talked about his disabilities as an appendage that I would take away if I could. That seems like a supportive thing to say, especially to someone who is in pain or suffering, but it's actually incredibly ableist. We now talk about his situation in terms of his response to it, rather than complicating his life with a lot of ableist magical thinking and hand-wringing.

Thanks to you all. Dr. Sobey, I'm working with Emma Van der Klift on some kind of response to the recent filicides in the autism community. I think you know her. She and I may contact you as we begin writing. Thank you again!

Karla, I agree with what you are saying about person-first language. I think it is a question of context. When disability is relevant we  need to emphasize it not try to hide it, disguise it or trivialize it. Some years ago, Barbara Waxman, who was an important figure in the disability rights movement, wrote a foreword for a book that I was finishing about violence and disability. In her foreword, she described herself repeatedly as "disabled woman." The publisher changed changed each and every instance back to woman with a disability and Barb changed it back again. The editor explained that it was the publisher's policy that person-first language always be used... Barb refused, saying that being disabled was an important part of her identity and the whole reason that she was writing the piece. The publisher eventually relented but insisted on  a long footnote, "Person-first language is not used in this foreword at the request of the author in order to express the concept of disability as a social concept."

With our son, his disability began at conception and it affects every aspect of who he is. Yes, there are parts of it that I really dislike intensely. I don't like the seizures that he has every day. I wish he was not immunocompromised and getting pneumonia to many times. I don't like the bone density problems that have led to fractures and constant worry. But I love him and I cannot imagine what he would be like if he did not have his disability, except that he would be a complete stranger to me. So trying to think of his disability as an incidental feature would be nonsense. No one could do so and claim to know him.

Say hi to Emma.

While this newly published study is on sexual violence not filicide, it adds one more dimension to the violence issue:

Monika Mitra, PhD, Vera E. Mouradian, PhD, Marci Diamond, MPA... Sexual Violence Victimization Against Men with Disabilities, American Journal of Preventive Medicine, November 2014.

The researchers found men with disabilities experienced sexual violence at rates more than 4 times that as men without disabilities and similar to the rates experienced by women without disabilities. As previously found in numerous studies women with disabilities experienced sexual violence at rates higher than both men with disabilities and women without disabilities.

We reported similar highly elevated rates of sexual violence as well as other kinds of child abuse against boys with disabilities in previous research.

Sobsey, D. , Randall, W., & Parrila, R.K. (1997). Gender differences in abused children with and without disabilities. Child Abuse & Neglect, 21 (8), 707-720.

Randall, W., Parrila, R., & Sobsey, D. (2000). Gender, disability status and risk for sexual abuse in children. Journal on Developmental Disabilities, 7(1), 1-15.

"Similarly, there is evidence that people living in poverty are about as happy as people who have wealth."

Whilst we would all fervently hope this to be true, it isn't.  See, eg, this from A.Alter in New Yorker, Jan 24th, 2014:

The first result replicated plenty of earlier research: people from wealthier countries were generally happier than those from poorer countries. To reach an average life-satisfaction score of four out of ten, people needed to earn about seven hundred dollars a year; for a score of five, they needed to earn an average of three thousand dollars per year; for a score of six, they needed to earn an average of sixteen thousand dollars per year; and to score seven they needed to earn an average of sixty-four thousand dollars a year.

You might like to read the report by the New Zealand Family Violence Death Review Committee, 2014, Fourth Annual Report: January 2013 to December 2013. Wellington, Family Violence Death Review Committee.  Published by the Health Quality and Safety Commission and available on their website www.hqsc.govt.nz

It has information on deaths of children and adults in New Zealand associated with family violence.

Thank you Alison.