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Dsobey at Icad captures what I felt on reading about the death of 13-year-old Jacob Grabe by his father, Alex Grabe, in September, and in particular the disquietude I felt in reading a recent article in the Denver Post. The article is entitled “Autism’s terrible toll: Parents risk hitting “a breaking point” and there’s the suggestion that parents are “at risk” of “hitting” that “breaking point”—as Alex Grabe did—-because of autism and its “terrible toll.” Icad states, clear and simple:
Murder is wrong and there is no good excuse for it.
Murdering any child is a despicable act.
Murdering one’s own child is as bad as murdering someone else’s.
Murdering a child with autism is just as bad as murdering any other child.
And:
Suggesting that parenting a child with a disability is so challenging or stressful that killing these children is somehow understandable or excusable adds to the probability that other parents will kill their children, because sick minds struggling with the impulse to kill can be assisted to go over the edge by social endorsements, which help them to rationalize murder.
Many families of children with autism do face significant challenges and should get the help that they need.
Using murders such as this to imply that unless families get what they need, there will be more murders is a dangerous and unethical form of advocacy [my emphasis]. It will contribute to future deaths, and treats children as moral hostages to their families.
Let’s save our respect and empathy for the parents who go on facing challenges day after day, and recognize the child murderers who fail to face these challenges for who they are. Parents who kill children with autism are no better or worse than parents who kill any other child.
Strong and straightforward language such as these statements from Icad is necessary to acknowledge that “social endorsement” and to question and critique it. Such “social endorsement” recurs in the Denver Post article (and it should be noted that I’m not so much criticizing the Denver Post, as our ingrained, often unacknowledged, attitudes about disability).
In the article, autism is described as
a maddening disorder of scrambled brain development that can lead some parents to snap, experts say. Autistic children suffer abuse and are killed at higher rates than normal children. Studies have shown that about 20 percent of autistic children are abused, compared with about 1 percent of other children. Those who deal with the disorder place the abuse even higher.
Icad examines the notion that disabled children are more stressful to parent, and also the Denver Post‘s statements about autistic children and abuse. According to Icad, it’s a “meaningless question” to ask whether it’s more stressful to parent a child on the autism spectrum than a child with other disabilities; “there is variability across individual children and families that is much greater than variability based on the category of disability,” writes Icad. Regarding abuse, here’s what dsobey writes:
I don’t know what study they are referring to, and I have never seen a study that actually says this. If there is one, it is seriously out of step with other research. Most research suggests that about 10% to 15% of children without disabilities experience child abuse. Some epidemiological studies that have attempted to compare abuse of children with autism to other groups of children have not found any significant difference. The classic Sullivan and Knutson study of 55,000 children in Omaha was probably the best study for comparing rates of abuse in children with and without disabilities. In that study, about 9% of school-aged children without disabilities had been abused and about 31% of children with disabilities had been abused. This study did not find significantly elevated rates of abuse among children diagnosed with autism, but it did find the highest abuse rates among children with behaviour disorders. In fact, most large scale, well controlled studies have failed to demonstrate that there is a clear link between autism and abuse. [my emphasis]It is important to recognize that the failure to find something does not mean that it doesn’t exist and there are a number of technical reasons that could obscure the link between autism and child abuse. However, for now, it is correct to say that the link between disability and abuse has been more clearly demonstrated for other disabilities. All things considered, as a researcher, I think that there is probably about the same link that exists between a number of other disabilities and autism.
I’m not sure how relevant it even was to mention abuse in the context of the article about Jacob Grabe—is there the suggestion that this occurs because of the “terrible toll” of raising an autistic child? The post on Icad even suggests that “the ideas in this article are dangerous,” because
So many parents will think about killing their child but turn back from the abyss, social endorsement through articles like the article in the Denver Post helps people on the edge construct the justifications that allow them to go over the edge.
And, too, constant reference to autism as that “maddening order” due to “scrambled brain development” does a real disservice—even harm—-to the public understanding of autism, as do suggestions that autism is caused by “toxins,” or that autistic children are somehow “poisoned” and “damaged.” No one’s denying that it’s not easy to raise an autistic or disabled child—-but we all need to be a little more careful with our language.
Read Icad’s two posts on Murder and Social Endorsement (Part 1) and Murder and Social Endorsement (Part 11).
@Tanners Dad,
Amid all the back and forth, I think we forget that we’re all in it together, differences and differences of opinions and all. Many regards—–
You folks really like to write stuff. The human element in this entire discussion is the fact that we are human. Eventually, everyone has a point of breakdown from stress. We do not come with a little geiger counter that tells us when we have experienced too much. The sad realization is we have to have a total paradigm shift to make people realize the breaking point for many parents have come and gone.
Thank you for asking CS. I do not know anymore if I am OK. It does make me feel more human that somebody in this great list of words decided to ask. Last week a kid killed himself online while others just watched. Nobody cared until it was too late. We all need to be kinder to each other.
My use of the warrior term is to generate a sense of urgency. My son is 15,001 on a waiting list to get help and services. Basically right now people have to die to move up. There are no plans for expansion of services and personnel. This is a tragedy of epic proportions. It deserves to have some flag waving fanatics moving the agenda forward. I am up for the job.
Phil Schwarz, well articulated. Harold…perseverate much?
As the father of a 36 year-old son with autism, I would like to express my appreciation for the comments of Phil Schwarz, especially:
“Our autism organizations do need to focus more on pushing for adult services and supports; the one sense in which it’s not counterproductive alarmism to declare that “time is running out”, is the transition to adulthood. Because there’s been so much focus on childhood issues and on causes and “cures”, not enough has been done to build up the infrastructure of adult services and supports that are needed.”
Since I now live in Israel (my wife, my son Ben and I moved here over 12 years ago from Boston, Massachusetts), I am focusing my efforts within my own small country, which I describe as “Planning for a good life for persons with disabilities.” Although many of my contacts are with adults with autism, here in Israel “to build up the infrastructure of adult services and supports that are needed” requires a broader effort for all disabilities. Fortunately, good ideas are universal and I am trying to network around the world. Again, my thanks to Phil Schwarz.
Arthur Golden
And certainly Harold Doherty is, like everyone else, always welcome to comment here.
I wouldn’t have put it so dramatically but, yes, Harolds claim that Kristina is against ‘free discussion’ is not:
A: supported by anything she has written, as per Phil’s explanation.
B: realistic. A lawyer of all people should know that you can constrain and direct thinking and attitudes by your use of one word over another. E.g. “alledgedly mentally ill muscleman with multiple court appearances” sounds much more negative than “ex-football hero and veteran actor”, yet both describe the same person.
Discussions that bandy about words like ‘toxins’, ‘damage’ and ‘tragedy’ trigger off our schema associated with those words. ‘Toxins’ triggers off ‘cure’, ‘damage’ triggers off ‘treatment’ and ‘tradegy’ triggers off ‘pity’. Any discussion that front loads its’ own end result is anything but ‘free’.
CS: “Harold, your boring.”
@HLD…
Yes. And you’re and arse: all you come out with is shit and wind.
At every opportunity, you come up with one logical fallacy or another, after having failed to read properly what someone has written. You need corking.
@Mike, thanks for continuing to speak out, and remaining connected to our community.
It’s not the accurate description of autism that Kristina is calling dangerous. That’s a strawman argument.
What Kristina correctly calls dangerous, are the overstatements of autism-as-tragedy rampant in the media (because they boost ratings and hence advertising revenue), and the false sense of urgency to find and apply the latest interventions at any cost (that only feeds the burgeoning quack-cure industry).
Parents who don’t have the means to engage in such goose-chases are led to believe that they are failing their children, that time is running out, that there’s no hope. And that’s why some of them crack and turn homicidal.
Now, if our autism organizations were more responsible, they would instead use their authority and leverage with the media to make sure that the messages broadcast about autism were (a.) that although autism can involve severe handicaps, significant progress in mitigating those handicaps can be made if one is willing to engage in a long-range, step-by-step response that involves first establishing reliable, trusted, and respected means of expressive communication, and then step-by-step educational interventions focused on skill development rather than “looking normal”; and (b.) that time is not “running out”, at least not in the childhood years: it is never too late to start doing the things that will produce progress and improved quality of life.
Our autism organizations do need to focus more on pushing for adult services and supports; the one sense in which it’s not counterproductive alarmism to declare that “time is running out”, is the transition to adulthood. Because there’s been so much focus on childhood issues and on causes and “cures”, not enough has been done to build up the infrastructure of adult services and supports that are needed.
But these murderers of their own children, with rare exception, are not killing adult children, they’re killing young children. It isn’t transition to an adulthood lacking in services and support that’s causing these parents to become homicidal. It’s the messages of hopelessness that the media continue to spew, aided and abetted by the big autism organizations’ penchant for playing the pity card.
Why can’t the fundraising message of the big autism organizations be instead, “it’s a big challenge and a long road, but your help will make that long road lead to successes, one day at a time”?
That’s the real story of Autism, Every Day.
I wasn’t beaten or abused by my parents, but by schoolkids that i went to school with.It seemed they thought it fun to hit the “weird” kid.
I am keeping the boy’s mother and the remaining family members in my thoughts and prayers. This mother had to bury her son alone. Hopefully there were family members there to support her, but she was in an emotional place that offers no solace and does not allow comfort to enter. I am truly thankful that the vast majority of people will never need to experience that pain.
While there is a good deal that troubles me about the news paper article and some of the comments here and elsewhere on the web; for the moment my thoughts remain with Jacob and his mother. What happened to Jacob was very wrong, he was not killed by autism, not by using plastic forks, and certainly not by anything one would call a warrior; no he was killed by a man he called dad. A man that reportedly blamed his actions on the mother for ruining the way Jacob was being raised.
The courts now have to determine if that man is fit to stand trial.
While I have a lot of bones to pick with neurodiversity people,I do think there is a valid argument,to be made that this is the sort of results you can expect,when most of the talk you hear about autism is about a cure.It can plant seeds in the minds of the more unstable parents out there.
Dr Michael Fitzpatrick,in his excellent article,over at “spiked” tells proves “Tannersdad’s” point about the use of the word “warrior”.I think in that context the term is correct.Perhaps on a subconcious level,Grabe thought he was “curing” his son.In a way,he is no different from the parent whose kid dies from chelation or DAN! treatments.
I can certainly understand how a parent might be driven to this,but much of the fault lies with the rest of the family for not coming in to take some of the burden off of the father.Where were the aunts,uncles,grandparents,etc. of Allen Grabe,or Ryan Dutter? Why haven’t they been caring for the boy as well ? This was a big problem with my family.They wanted nothing to do my mother,as she had an autistic son (me),and a daughter,who was both autistic AND bipolar.This is one of the hidden stories of so many families like this.It is all usually dumped on one parent.
My mother had been drumming that into my head my entire life,but it has only been recently that it finally got through to me,to the point where I decided to investigate it myself,and this is quite a common problem.
There is a problem with the language used in this article “maddening disorder”,”Autism can make normal family life impossible.” and such,but this is probably because of the biases of the woman who wrote thew article.She may be a DAN! mother herself.You ought to ask her,Kristina.
Prevalence
Davis [citing ValentiHein & Schwartz, 1995] reported “more than 90% of people with
developmental disabilities will experience sexual abuse at some point in their lives.” Sobsey
[2000] noted that “as many as nine out of ten women with developmental disabilities will
experience sexual assault at some time.” However, these statistics cannot be substantiated based on the current body of research reviewed for this summary. No other article reviewed for this summary presented a 90% prevalence rate for either all people with developmental disabilities or women with developmental disabilities.Other prevalence rates cited were: 39 – 83% of females with developmental disabilities will be sexually abused by the time they are eighteen [Davis]; “close to” 80% of women with developmental disabilities have been sexually assaulted at some point in their lives [Protection and Advocacy, Inc., 2003]; 32% of males with developmental disabilities are victims of sexual assault [WCASA, 2003]; 16 – 32% of males with
developmental disabilities will be sexually assaulted by their eighteenth birthday [Davis]. The range of prevalence rates illustrates the complexity in forming an accurate picture of the extent of sexual violence against people with developmental disabilities.
In fact, an accurate prevalence rate will be difficult to determine considering that a number of authors [Davis; Petersilia, 2001; WCASA, 2003) noted only three percent (3%) of sexual abuse
cases involving people with developmental disabilities are ever reported. Other authors noted that 75% of sexual abuse cases against people with developmental disabilities are not reported [HornerJohnson and Drum, 2006] and 71% of crimes against people with severe mental
retardation go unreported [Protection and Advocacy, Inc, 2003].
The research shows that all forms of violence, including sexual violence, against people with developmental disabilities is underreported. Petersilia [2001] noted “few cases of violence and abuse perpetrated against people with developmental disabilities get reported to the police and even fewer are prosecuted because officials hesitate to pursue cases that rely on the testimony of a person with a developmental disability.”
Many researchers confirmed the greater extent to which people with developmental disabilities
are at risk for sexual violence. Elman [2005], HornerJohnson and Drum [2006], Protection and
Advocacy, Inc [2003] and Sobsey [2000] all noted that people with developmental disabilities
are 4 – 10 times more likely to be sexually assaulted than people without developmental
disabilities. Several authors [HornerJohnson Drum, 2006; Protection and Advocacy, Inc, 2003;
Powers et al, 2002] noted that people with disabilities (not specific to developmental disabilities) are 2 – 10 times more likely to be sexually assaulted than people without disabilities.
Other areas where the reviewed literature shows agreement are in the duration of abuse and
offender characteristics. HornerJohnson and Drum [2006] and Elman [2005] cited women with disabilities experience abuse for significantly longer periods of time than women without
disabilities. Sobsey [2000] and WCASA [2003] cited 49% of people with developmental
disabilities are assaulted ten or more times.
A number of authors noted between 95 – 99% of the offenders of sexual violence against people
with developmental disabilities were known to the victim [Davis, Nosek and Howland, 1998;
Protection and Advocacy, Inc., 2003; Petersilia, 2001]. Collier [2006] stated “offenders are most
often known to the victim and hold positions of trust and authority; for example, caregivers,
attendants, family members, drivers, etc.” Much of the literature reviewed showed that 44% of
the offenders had relationships with the victim because of the person’s disability [Davis; Elman,
2005; Nosek and Howland, 1998; Petersilia, 2001; Powers et al, 2002]
http://www.oregonsatf.org/prevention/docs/DD%20Literature%20Summary.pdf.
“Autism is a significant developmental disorder affecting the brain which often leaves it sufferers incapable of surviving without continual and significant help from others throughout their lives.”
Yes, autistic people do suffer, but its been my experience both as one and watching my son that what he suffers from the most is prejudice and indifference. The prejudice of the uninformed that wouldn’t allow him to attend a preschool, after finding out he was autistic. Prejudice from educational psychologists who were looking to make him fail rather than succeed.
Yes, autism is a lifelong disorder, but I hope prejudice isn’t. While I disagree with your outlook, I share your concerns in regards to my son. Not because of who he is but because of who we are as a society. I’m concerned with the sympathy expressed for people who do grave injustices to autistics.
“Are these dangerous words?” If viewed in context and in reality, I don’t think so. If viewed through the lense of prejudice and ill will, yes I do think they can be dangerous. They can be used to deny an education, deny freedom and choice, they can be used to imprison, torture (JRC) and even kill (subject matter at hand).
“Do you think these children would be alive if everything written about autism was positive?” We don’t know do we? I’m certain it wouldn’t hurt.
“People are better helped by others talking about the full gamut of emotions of raising a special child where joy and hope go right along with angst and despair, and exhaustion is perhaps the most common feeling of all.”
I have a difficult time with the concept of public therapy. I’ve never felt the need for it and its probably due to how I was raised. In our home we had lots of arguments between family members. Some of my family absolutely hated each other, but there was always a united front to the community. I can remember my mother crying at home or becoming very angry for me, but I’ve never heard her say a negative word about me to anyone. In a strange way it actually can be a bit frustrating because the way she tells it, I never did anything wrong in my life, which I know not to be true as does she but she would never admit it to anyone outside the family.
The idea of publicly complaining about my child has never occurred to me so I can’t really comment to the need for public angst among some parents. Its just not how I think. I wish I could understand this need better so perhaps I could help, but I’m at a loss.
“The truth will prevent more of these crimes than denying the difficulties of autism.”
I agree but I suspect for different reasons. I tend to recognize that many difficulties with being autistic are imposed by outside the autistic community.
Sadly, there will always be parents who kill their children and vice versa. There are certainly more neurotypical children killed by their parents than there are autistic children. Some folks just aren’t able to be a good parent and we should look to see how we can help these parents and also look at changing the prejudice experienced by autistic people. Every child deserves a parent that loves them unconditionally and every child should feel safe in their own homes.
Autism is a significant developmental disorder affecting the brain which often leaves it sufferers incapable of surviving without continual and significant help from others throughout their lives.
Are these dangerous words? Are we a society than cannot state the above for fear that such an assertion will bring violence upon those in the above condition because they will be seen as less than human?
I pray not.
Children are indeed murdered in cold blood. The crimes are often planned, and afterwards there is damn little remorse from the killers, but often a claim that the killing was an act mercy.
Do you think these children would be alive if everything written about autism was positive?
People are better helped by others talking about the full gamut of emotions of raising a special child where joy and hope go right along with angst and despair, and exhaustion is perhaps the most common feeling of all.
The truth will prevent more of these crimes than denying the difficulties of autism.
CS wrote,
A tall order! Trying hard here and stumbling along (and learning and enjoying it)—-
@TannersDad,
That headline about the “warrior dad” has bee on my mind all day—-Jim used to point out to me that I was in “warrior mom” mode, a kind of us-against-them mentality. It was never effective; it led to too much “I can do anything in the name of helping my child”—–glad to be a pacifist now.
Harold, your boring.
I believe you too should be more careful with your language Professor Chew. Labeling as dangerous the free discussion of possible causes or factors involved in the development of autism disorders and insinuating that such discussion is related to the deaths of autistic children is bizarre.
Not your finest moment.
Thank you for making these strong statements. Comedians may joke about “eating their young,” but killing a child, any child, is no joke.
The article alone was appalling and offensive, but then I read the responses to it and was sick to my stomach. I need wonder no more why assistance and support are in short supply for people on the spectrum. I also have every right to be deathly afraid for my son as he ages. Not from ME or my HUSBAND, mind you, but from society. There are some truly hateful people out there.