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).

Autism’s terrible toll: Parents risk hitting “a breaking point” is the headline in today’s Denver Post for a story about 13year-old Jacob Grabe, who was shot by his father, Alex Grabe, early in September. The article notes, and lists “similar chilling stories of sudden parental breakdowns have played out in the U.S. in the past several years,” and mentions Katie McCarron, Ulysses Stable, Kyle Dutter—shot this month by his father—and too many others.

Too many others.

Kev writes about 12-year-old Kyle Dutter, who was shot and killed by his father, Ryan Dutter, who then shot and killed himself, on Tuesday. Ryan Dutter had created a website about his son; he had filed for bankruptcy last fall. Kyle was in the the sixth grade at Glacier Creek Middle School in Cross Plains, Wisconsin.

No words can say……

This post references an article from back in May in the Herald Tribune, but the topic is as timely as ever: Have you ever visited your child’s classroom and noted that the aide your child most liked is long gone, and that there’s at least one new aide, if not two?

The Herald Tribune notes that there have been at least four substitute teachers for students in a special ed class, after their teacher was arrested on allegations of child abused in February. The article comments on the high turnover rate of special education teachers:

The turnover rate among special-needs teachers is one of the highest in the profession, with Florida losing about 14 percent of the educators in this area each year.

The high stress of the job, along with what teachers say is limited support and resources, drives people out of these classrooms.

The annual attrition rate for special ed teachers is estimated to be 8% to 10%, according to the Education Resources Information Center. Over the years, aides have appeared in Charlie’s classroom one day, been gone the next or suddenly and the teacher has been as in the dark as me about why. None of the aides who had been with Charlie and his classmates for the past year (and even two years) went with them to middle school; all the boys have adapted fine to new staff, but it wasn’t easy as first.

Coupled with an autistic child’s need for consistency and routine, a high teacher/aide turnover rate seems to be the last thing needed—-and instead it’s more of a commonplace

20-year-old Kevin Brinegar, who has autism, stabbed his mother, Karen Brinegar, twice in the back last Monday, the September 21st Miami Herald reports. He is charged with aggravated battery charges and is being held on a $50,000 bond at North Broward Bureau (FL), a minimum-security facility for the mentally ill and medically infirm. Expert and legal opinions vary about what Kevin Brinegar faces:

Dr. Stephen Edelson, director of the Autism Research Institute, expressed concern about the level of care Brinegar has received, and will receive in the future.

”There’s a general feeling that in the criminal justice field, there’s some discrimination going on,” Edelson said.

“They are not treated fairly.”

Also, police often don’t understand those with autism or know how to handle them, thinking they are more predatory than they actually are, said University of Miami Professor Jon Shaw.

There is no predictable relationship between autism and violence, Shaw said. In two-thirds of cases, autism is accompanied by mental retardation and an inability to communicate, and that is often what triggers aggression.

Some also cannot differentiate between what is real and what is not, he added.

Usually, they act out by pushing, biting or hitting. But to chase someone out of a home, hold her down and stab her twice, as BSO alleges Brinegar did, almost never happens.

”It’s quite unusual that he actually used a weapon,” Edelson said.

“I’ve been in the field 30 years, and I’ve never heard of it.”

Autism is not a defense against a violent crime, said Bruce J. Winick, a UM law professor. For the state to prosecute, Brinegar merely has to be competent to stand trial.

The real question is whether he knew right from wrong.

Brinegar was originally placed in a maximum-security main jail and, after meeting with mental health professionals, was placed at North Broward. His mother has been released from the hospital.

13-year-old Jacob Grabe, who had autism, was shot by his father, Allen Lee Grabe, on Thursday night, the September 12th Rocky Mountain News reports. Grabe was arrested and charged with first-degree murder and child abuse resulting in death. Jacob was an eighth-grader at Grand Mesa Middle School.

Rest in peace, Jacob.

A Bay Area woman was sentence to seven years in prison for posing as a school volunteer or teaching assistant—-and, in one case, the sister of an autistic sibling—-to gain access to classrooms, where she stole teachers’ wallets and, in some cases, opened up credit cards under their names. It’s estimated that the woman, Tynesha West, stole about $100,000. The August 28th Contra Costa Times quotes a special education teacher who says that

West “harmed us more than the money, credit cards, gift cards and identities she stole,” a Lafayette teacher wrote. “She stole all that we stand for: working hard, playing fair and square, following the rules, kindness to others, honesty, being a good citizen — just to name a few.”

I can’t say this wouldn’t have happened at Charlie’s school. I do know that, when anyone visits his classroom for the first time, that person has to wait in the front office and is escorted to the classroom by a staff member. Anyone who’s not staff has to wear a visitor’s name tag and to sign in and out of the front office.

Always saddening to hear how someone uses autism for less than worthy ends.

Charlie once took the car key and put it in the lock of the front door lock. We park our car outside and, fortunately, we soon noticed the key in the lock and quickly retrieved it, realizing that our car could have been driven away by the next passerby. Charlie’s never (yet) tried to get behind the wheel and given his visual processing difficulties, that wouldn’t be a good thing to occur.

An autistic 16-year-old in Apex, North Carolina, drives his family’s SUV, damaging mailboxes and cars and accidentally striking his father, today’s WNCN-TV reports.  And in tomorrow’s New York Times, writer Ann Bauer describes how her 20-year-old autistic son Andrew drove her car 70 miles away to St. Cloud, Minnesota, where it was found “scratched, filthy and out of gas but otherwise undamaged”—and why she decided to have him arrested. At 17, he was misdiagnosed as psychotic, put on medications that made him “crazy,” “slipped into full blown catatonia, and was treated with ECT. After living briefly at home and then at a crisis mental-health center, Andrew went to live in a group home where

He was routinely threatened or roughed up by shop owners from whom he had stolen, but even this didn’t faze him. When the police arrived, he would explain that he was disabled and living in a group home and ask them politely to take him back.

They did, every time. On the way, they would call me, and my husband or I would get out of bed and drive across town to pay the bill.

We had meetings, interventions. Each time we lectured him, Andrew would nod gravely, apologize, then go out and steal again.

One night at the group home, Andrew turned to me and said, “I’m not sure I’m autistic anymore.”

“What are you?” I asked.

“I think” — he paused for a long time — “I’m just a thief.”

Five hours later, he stole my car.

Arresting one’s child seems a pretty extreme measure but its ending is not without a little hope, that bit of light that keeps one going. Bauer meets Andrew—in orange scrubs—-in a courtroom where a judge addresses him as “Mr. Bauer” and asks him to explain what occurred. Writes his mother:

“Mr. Bauer,” I thought, strangely pleased. In his deliberate, troubled way, my son had done it: he had found his way to adulthood. And although I didn’t know it then, he would find his way through this, too. But he needed to go through it, not back, and not around. Maybe that’s what he knew better than any of us.

“You Need to Take My Son to Jail” appears in a column entitled “Modern Love” or rather, tough love in rough times.

Some software and other updates have been going on behind the scenes here, so if this blog loads slowly or (alas and argh) a comment does not go through, please bear with us. Over in the sidebar, the lists of comments and recent posts have not been updating (Learning All the Time (Whether You Know It Or Not) was posted on Friday morning) and I’m hoping that will get fixed soon. In the meantime, I wanted to point out discussions about the YouTube video of an autistic teenager getting beat up—about how autism, unlike measles, is not an infectious disease—–about the luxury of being able to choose to vaccinate or not—-whether hacker Gary McKinnon is a scapegoat or a public enemy.

Also: Tara on an idea for housing for disabled adults in New Jersey on Sued: New Jersey’s Department of Human Services.

And here’s what’s been under discussion here for the past two weeks:

• Gluten-free more and more common (and not just for autism)
  If everyone’s doing it, is “the diet” really a treatment for autism?
• Another Test to Detect Autism Earlier
  University of Missouri-Columbia are studying how to use 3-D imaging to analyze the facial structures and brain abnormalities of autistic children.
• Minnesota Has the Highest Autism Rate?: Depends on How You Count It
  An article in the August 20th CityPages in Minnesota suggests that it’s rather the North Star state that has the highest rate, 1 in 81. The article relies on a chart made up from data from public school districts around the country.
• The Autistic/Has Autism Question
  Dan Olmsted “really can’t stand” it when the “people with autism” are referred to as “autistics,” and he sees the word as a “corollary of ‘retards’.” Hmmmm…….
• Measles Cases, and Fear of Autism, on the Rise
  Measles cases are at their highest level in a decade, and is looming dread of autism at least partially responsible for this?
• The Parental Right to Choose to Vaccinate, Or Not
  A story from MSNBC provides some details about the attitudes of parents who’ve chosen not to vaccinate their children for their “philosophical or religious beliefs.”.
• The Right to Choose, So Choose Carefully
  If the word keeps getting out that there’s some (scientifically disputed) link between measles and autism, and vaccination rates continue to fall, and autism rates stay the same or rise, and measles really really returns—-will those who’ve invested so much energy to promote a vaccine-autism link be willing to be responsible for the consequences of their efforts?
• Measles You Can Catch (But Not Autism)
  “People have forgotten what measles looks like and have forgotten how infectious it is.”—Jane Seward, deputy director of the division of viral diseases at the CDC
• Monday at the Dentist
  A super great visit to the dentist for Charlie!
• A Note On Hillary Clinton’s Speech
  Said the Senator in her speech to the DNC: “I will always remember the single mom who had adopted two kids with autism. She didn’t have any health insurance, and she discovered she had cancer. But she greeted me with her bald head, painted with my name on it, and asked me to fight for health care for her and her children.”
• The Luxury of Choice
  Writes Matthew N. Parker, M.D.: “Perhaps it is yet another symptom of our wealth in this country that we have the luxury of wondering whether it is necessary to vaccinate.”
• Unlike Measles, Autism is Not a Potentially Fatal Disease
  Measles is an infectious disease; autism is not.
• False Prophets and Failed Poets
  The “false prophets” of autism are, it would seem, such figures as Dr. Andrew Wakefield, the doctor at the center of the controversy over the MMR vaccine and autism, and numerous others who have proclaimed that vaccines or something in vaccines is behind the epidemic rise in autism diagnoses, and who’ve given short shrift to arguments for how better diagnosis, understanding and awareness of autism have contributed to a rise in the prevalence of autism.

Gerald Guay, who formerly worked in a Bloomfield (CT) state-run group home for mentally disabled people, was banned from working in the health care industry after pleading guilty to negligent cruelty to a person, the August 11th Hartford Courant reports. Guay tormented and abused 38-year-old Christopher Stockton, who has severe autism, developmental disabilities, and obsessive-compulsive disorder, and does not speak. Stockton’s mother, Alice Stockton, suspected the abuse more than two years ago when her son started to have seizures, around the time that Guay started to work in the home:

Alice Stockton was told [by Connecticut's Department of Developmental Disabilities] there was nothing that could be done because there was no proof of abuse, according to the affidavit. Eventually she began to periodically take an audio recording what was happening in the room that her son had to himself, according to the affidavit.

On Dec. 18, 2007, Alice Stockton activated the recorder in his room, but did not immediately listen to what transpired. Three days later, she picked up her son and brought him to her home in Windsor for the weekend. When she tried to brush his teeth, she noticed a laceration and a hematoma on the inside of his mouth, she told police.

On Dec. 23, Alice Stockton listened to the recording and heard Guay entering her son’s room shortly after she left. In the recording, Guay is heard swearing at Christopher Stockton and threatening to “bash his head in” several times, according to the affidavit.

According to the affidavit, the recording reveals several incidents over the course of an hour including two revolving around the flushing of a toilet by Christopher Stockton, who also suffers from obsessive compulsive disorder.

On the recording Guay can be heard, in an expletive-filled tirade, threatening to beat Christopher Stockton and make him eat the toilet if he doesn’t stop flushing it, according to the affidavit.

Guay was given five-year suspended prison sentence, three years’ probation and 100 hours of community service. He has worked with disabled individuals for 14 years.