It’s the countdown to the end of 2008 and here is some of what was going on at the beginning of the year:

The trial of Dr. Karen McCarron began on January 7th. On January 16th, McCarron was ruled guilty on all counts. On April 1st, she was sentenced to 36 years in prison for the May 13th suffocation of her then 3-year-old daughter, Katherine “Katie” McCarron.

January also saw the publication of further evidence refuting a link between vaccines and autism, with the publication in the Archives of General Psychiatry on the decline in thimerosal exposure and the continue increase of autism rates. A study in Pediatrics offered further proof that the vaccine-autism hypothesis is a hypothesis. The study showed that ethyl mercury is expelled faster from babies’ bodies than thought, and that there is “…..little chance for a progressive building up of the toxic metal.”

Nonetheless, a new legal drama, Eli Stone, based its first episode around a (highly fictional) case involving a child becoming autistic due to a vaccine. (And what celebrities have to say about science was a constant irritant throughout the year.)

Also, new research on genetics (on chromosome 16 and a test for autism) appeared in January, and throughout the year, with one scientist proposing a unified theory of autism.

An Arizona man, Raymond G. Parenteau, was arrested on Wednesday on the charges of allegedly defrauding the Prescott Unified School District of almost $20,000, today’s Daily Courier reports. Parenteau had contracted with the school district for $55 an hour to homeschool his 12-year-old autistic son; he is alleged to have hired a certified special education instructor to work with his son for $25 an hour, and to have kept $30 for himself:

During a nine-month period starting in January 2007, Parenteau allegedly charged the school district $36,258. He paid the special education assistant only $16,262 of the money he received from PUSD. Parenteau also allegedly billed the school district for hours not used for teaching his son and created false invoices.

Says Parenteau, who has also advocated on behalf of several parents of autistic children during the past few months:

“The charges are unfounded. I will end up vindicated………This gets PUSD what it wanted. I am not allowed to help other students. As a condition of my release on bail, I have to stay away from PUSD.”

Parenteau was charged with felony fraudulent schemes and forgery, and is currently out on bail.

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).

In South Korea, a now-16-year old girl with “mental and developmental diabilities” was sexually abused by her grandfather and three uncles for 7 years. The abuse occurred from August 2001 to May of this year—that means she was 9 years old when it started. According to the December 4th Joong Ang Daily, the girl’s relatives were convicted by the Cheongju District Court on November 20. Judge Oh Jun-keun recently gave a three-year suspended sentence to the 87-year-old grandfather and to two of the uncles, 57 and 42; another uncle, 39, was given an 18-month suspended sentence. According to authorities, the girl’s father is also suspected of incest, but the case was dropped against him because the statute of limitations had expired.

In his ruling, the judge said that he showed leniency because the relatives have “raised the victim despite economic hardship.” From his statement:

“It is inhumane for the accused to have repeatedly violated the young victim, who is their relative, by treating her as a tool to release their sexual desires……..It is necessary to hand down serious punishment taking into account the victim’s grave mental state.”

………..

“Taking into consideration her disabilities, she needs continuous support and help from the accused, who are her family members…….Some of the accused are aged and ill, so it is difficult for them to endure prison life. Therefore, I suspend their prison terms.”

Prosecutors had sought five-years’ terms each for the grandfather and two of the uncles, and a three-year prison term for the third uncle.

Outrage at the judge’s rulings has been immense, with “tens of thousands” of people signing an internet petition calling for the impeachment of Judge Oh. Over16,066 have signed the petition as of this posting; the signature drive is to end on December 15th. I’ve been trying to sign the petition (the online forum it is on is in Korean).

Yes, the crimes and the ruling are making me feel a lot more than queasy.

More about this case at:
• Korea Times
• Brian in in Jeollanam-do
• ICAD
• What Sorts of People
• NTs Are Weird

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……

“Only a Fool,” an online recording posted on MySpace by a friend of the parents of hacker Gary McKinnon, is in the top five of MySpace videos watched——McKinnon allegedly hacked his way into 97 computers belonging to NASA, the Department of Defense and several branches of the military, and is facing, and fighting against, extradition to the US. According to the Scotsman:

Despite struggling from depression, McKinnon posted his self-penned track on MySpace and within 48 hours it had been viewed by more than 100,000 people – taking it to No.5 in the video charts.

McKinnon’s melancholy ballad is a tale of survival in the face of great adversity. The chorus features the lyrics: “Don’t stop, don’t say it don’t matter/If it ain’t easy try harder/Only a fool would let it go/Don’t stop, don’t sit and do nothing/If it ain’t easy say something/Only a fool would let it show.”

The equally downbeat video features youngsters trudging around a bleak inner-city location.

McKinnon could face as much as 60 years in an American prison.

A three-year-old autistic boy died after being strangled by his seatbelt on a schoolbus this past Sunday, the Jerusalem Post reports. An aide has been arrested:

During a police investigation into the incident, the boy’s mother said that she realized he was unconscious when she boarded the school bus to help him off after it arrived at her house.

Police later began to suspect that the incident was a result of the boy being improperly secured into his seat, a suspicion that led to the arrest of his aide

Many, many thoughts with the boy’s family. Many.

Shortly after 9/11, Gary McKinnon—a “UFO-obsessed computer hacker”—allegedly hacked his way into 97 computers belonging to NASA, the Department of Defense and several branches of the US military. The European Court of Human Rights has cleared the way for McKinnon, who is British, to be extradited to the US where he would face eight charges of computer fraud. McKinnon appealed this decision and lost, and autism experts, politicians, lawyers and civil rights campaigners have been urging home secretary Jacqui Smith to intervene so McKinnon can be tried in Britain rather than being extradited to the US.

Experts including Simon Baron-Cohen, professor of developmental psychopathology at Cambridge University, were commissioned to access McKinnon, who has been recently diagnosed with Asperger’s Syndrome, as reported in today’s Guardian. Smith has rejected the assessment:

‘We’re upset and disappointed with the Home Secretary’s decision, as she has clearly not given proper consideration to Gary being diagnosed with Asperger’s,’ said his mother, Janis.

According to a fresh legal challenge by McKinnon’s team: ‘There remains a real risk of the claimant being detained pre-trial and thereafter being imprisoned at a high-security institution, despite suffering from Asperger’s syndrome, which would violate the prohibition on inhuman treatment protected by Article 3 of the Convention.’

McKinnon’s lawyers note that there would be “profound implications” for their client’s mental health if he were put in a high-security prison in the US.

A special education teacher in New Britain, Connecticut, is still teaching and on the school district’s payroll, the October 11th Hartford Courant reports. A warrant was issued for the arrest of Michelle Campbell on Thursday; she was released after posting $5000 bail. Campbell taught a special education class with ten autistic students at the Chamberlain School and is accused of slapping a child and splashing water into the face of another; the children are boys ages 5 to 7. The incident occurred last May and campaign will be arraigned October 23rd on three counts of risk of injury to a minor and four counts of cruelty to persons. Campbell’s co-workers reported the abuse.

This is hardly the first time I’ve written charges of abuse by school personnel or other staff to autistic individuals and it’s hardly a fair portrait of all that most aides, teachers and others do.

We have to figure out how to do better.