As in, school closures and budget cuts to programs for autistic children.

In Brooklyn, a nationally recognized program for speech and language delayed children, The Little Room, will either be moved from its location in the Brooklyn Heights Montessori School or closed, according to the December 13th New York Times. The Little Room, which has been in operation since 1970, is “one of the most popular and best regarded [preschools for special education students], not just for those enrolled but for dozens of other families who receive evaluations and support services at the school.” Among the factors being cited as reasons for moving or closing The Little Room are the costs incurred from maintaining a small class size (The Little Room’s classes are capped at nine students) and the teacher’s salaries, which are comparable to those of the other teachers at Brooklyn Heights Montessori School.

In South Carolina, budgetary concerns are threatening a program to provide early autism treatment, as noted by yesterday’s Greenville Online:

State Sen. David Thomas said the state Department of Disabilities and Special Needs [DDSN] appears to be “raiding” special programs funded with specific appropriations to protect the core agency from mandated budget cuts, a move he said is a “form of theft” that raises “serious legality questions.”

DDSN officials state otherwise; Thomas says a new audit shows that $9 million of $10.5 million appropriated for the autism program has gone unused or been diverted by DDSN.

A school closing and funding for services promised and then disappearing: We’ve been through both of these experiences, and I’d think that many families have, and that we’ll be hearing more stories. What if your child’s in a public school program with a 1:1 student to teacher ratio and there’s a hiring freeze, and then more people keep moving into the school district because of its reputation for special education?

School boards and state officials need to hear that autistic children need these programs and services, and that there needs to be transparency about how decisions are made, and how funds are allocated. Parents  put in huge efforts to get these programs in place, and our kids make even huger efforts to learn and do what’s asked of them: Closures and cuts shouldn’t just be made without keeping those who they’re going to affect aware and informed, and not in the dark.

Back in August of 2007, University of Georgia mathematics professor Shuzhou Wang was charged with making terroristic threats at Cedar Shoals High School during a parent-teacher conference for one of his children; Wang is the father of two autistic children. As reported in the Athens Banner-Herald, a grand jury did not indict Wang, noting that he did not intend to terrorize anyone:

At least one school official felt threatened by his remarks, according to the indictment prosecutors presented.

Wang “did threaten to commit a crime of violence with the purpose of terrorizing (the official) by threatening to kill people in the county,” the court document states.

The professor and his wife struggle to raise two children with autism, and he was frustrated during the meeting and said things he regretted, according to Wang’s attorney, David Crowe.
“He was trying to nail down their curriculums, to make sure they get what they needed,” Crowe said.

Grand jurors apparently agreed Wang didn’t intend to terrorize anyone with the alleged threats, the attorney said.

“Of course, I can’t really speak for the grand jury, but what Dr. Wang said, in fact, didn’t frighten anybody,” the attorney said.

The conference was tape-recorded, and Crowe said when he listened to the tape, he didn’t hear anyone say they felt threatened by Wang.

The Athens Banner-Herald also notes that Wang was frustrated by “five unfounded reports of possible abuse school officials made within the previous year to the Clarke County Department of Family and Children Services.”

It’s a stark and difficult example of the (understatement) strained relationships that can exist between parents and special educators.

On October 12, while presiding as the honorary chair for an Autism Speaks walk on the campus of Ohio State University, President Gordon Gee made remarks including the statement that “‘It [autism] should not exist.’” Melanie Yergeau, a 2nd-year Ph.D. student in English, wrote this letter, which is posted on the Autistic Self-Advocacy Network blog. As Yergeau, who notes that she has Asperger’s Syndrome, writes:

Until very recently, I have felt incredibly welcome at Ohio State—due to the interdisciplinary work of the Disability Studies Program and the Department of English, the Office of Disability Services, and the programs for high-functioning/Asperger’s adults at the Nisonger Center. I would urge you, as you continue in your autism advocacy, to consider what cure means to autistic individuals themselves, to familiarize yourself with organizations that actually appoint autistic individuals to their executive boards (e.g., the Autistic Self-Advocacy Network, or the Global and Regional Asperger Syndrome Partnership). In this regard, I find it important to note that none of the leadership or board positions of Autism Speaks are occupied by autistics: Autism Speaks speaks about autistics rather than for or with autistics.

As I read articles and listen to reports of the rally from my saddened autistic friends, I’ve noticed a trend in representation at Autism Speaks rallies like the one on October 12, 2008: autistics themselves have no voice. Any conversation that determines the fate of autism, I would argue, must consider the opinions, voices (however literally or metaphorically), and experiences of those on the autism spectrum. Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.

Read the rest of Yergeau’s thought-provoking letter.

A 5-year-old Arizona boy was bound at his hands and feet with duct tape by his father, as reported in today’s AZFamily.com. Jasper Smalley has been diagnosed with “Obsessive Compulsive Disorder, Bi-polar Disorder and Asperger’s Syndrome.” Here’s what allegedly occurred:

[Jasper's mother, April Smalley] says one day her ex-husband found out Jasper was caught hitting other children at daycare. “He called me after he had taped him up and told me he had duct-taped our son. I asked him to remove the tape immediately, and he said he wouldn’t. He said he was being punished.”

It was a punishment that made its mark in Jasper who was bound at his wrists and ankles.

April explains, “There were red abrasions on his wrists. It looked almost like where the tape had cut into his arm.”

April called Tempe Police. The police report says Philip Smalley admitted to taping his son three times. It reads, “Philip then took more tape and taped Jasper’s feet back together and taped his hands back together and taping up to the shirt sleeve of Jasper to prevent him from wiggling out from the tape again.”

The report goes on to say, “Jasper was crying and crawled on the ground to his bedroom with his hands and feet taped together where he sat and cried.”

The next day a judge granted April an order of protection against Philip. Police investigators called the case “felony child abuse” and sent it to the county attorney’s office but prosecutors never accepted charges.

Prosecutors have told April Smalley that they would “never get a guilty verdict.”

But duct tape?

Family and Office Roles Mix, yesterday’s New York Times noted:

But workplace roles and the dynamics among colleagues can go much deeper than those somewhat superficial stereotypes, especially in a nation where many people spend as much time with colleagues as they do with their families, where the office so often mirrors the family.

A nanosecond to guess which role I fall into……..

(Hint: Yesterday afternoon, upon entering the building—it’s an old house—where my office is, I confront a huge puddle of coffee and my instant reaction is…………….. I start unfurling paper towels and mopping it up, while a student waiting to talk to a colleague looks startled and then says “I can help!”)

Next Wednesday, on December 10, from 2:00 p.m. to 5:30 p.m. ET, there will be a meeting of the Services Subcommittee of the Interagency Autism Coordinating Committee (IACC), to review public comments received in response to a completed Request for Information. When I attended the November 21st IACC meeting, a good part of the agenda was devoted to discussing services and the many needs of adults.

You can view the meeting agenda and also see who is on the committee. The meeting is being held here:

National Institutes of Health
9000 Rockville Pike
Building 31
Conference Room 7
Bethesda, MD 20852

You can attend the meeting virtually via a webinar; to register and access it, go here:

https://www1.gotomeeting.com/register/563207085

Or, to attend via a conference call, here’s the numbers:

Dial-in number: 888-455-2920
Access code: 3857872

And, it’s noted that:

There may be an opportunity for members of the public to submit written comments during the meeting through the web presentation tool. Submitted comments will be reviewed after the meeting. If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

Okay, there’s probably a few other things, and generally we’ve been pleased with—-and Charlie seems comfortable, for the most part, to like—his current school placement. Nothing’s entirely perfect and things this week have been more frazzled than they have been, with Charlie irked by a sore in his mouth (’tis the season for such things). Plus, he seems more sensitive to sound than ever, especially to certain types of people’s voices, and especially when these are at higher pitches and loud. A low-ceilinged classroom in a really big middle school — and fluorescent lights and linoleum — probably aren’t the ideal set-up and his teacher and I have been emailing a lot. Fortunately a package from my parents with some noise-cancelling headphones showed up on Tuesday and we’ve been working on Charlie wearing these.

“‘For almost a decade now, families of children with autism have continued to face an impossible choice between prohibitively expensive private autism programs and an unresponsive public school system.”

Taline Sagharian, whose 12-year-old son Christopher is autistic, is quoted as saying this in today’s CBC.ca news, in a story about a Supreme Court ruling regarding an appeal from five families who are to sue the Ontario government for discrimination against their autistic children. In 2004, the families filed a $1.25-billion lawsuit, charging “negligence and damages”:

The families are suing the province and five school boards, accusing them of discrimination for failing to provide their children with the expensive [ABA] therapies they require. They have argued that other kids with special needs receive therapy along with their education within the publicly funded school system.

So far, our public school system has been responsive, though misunderstandings can occur. We believe very much that Charlie needs and can be educated in the public schools and when school is good, it’s good for our whole family—-no family should have to face that “impossible choice.”

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

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.