A Lynchburg, Virginia, father is upset that his 16-year-old autistic son was taken away from him and placed in a mental institution far from home for a day. Gordon Bowyer told WSET news that “‘they took him from me, and they took him by force.’” Bowyer and his son, Joshua, were waiting for an appointment at Central Virginia Community Services when Joshua became upset and “officers took him into custody at Lynchburg General Hospital.”

Bowyer - “They went in like they were raiding a crack house. And my son screamed out ‘no!’ He was real scared, you could tell by the tone of his screams. And I could hear him hollering ‘daddy, daddy!’”

Community Services couldn’t comment for this story. And to be fair, officers had an order from a judge telling them to take Joshua to a hospital in Staunton. But his dad thinks health workers went too far.

Bowyer - “I was in the office for him to be treated, not mistreated.”

I’m not certain of more of the details here but I can feel Bowyer’s angst at what seems to be a very unexpected separation of his son from him. I can and must most certainly say that one of the most important things to me in the world is that I’m able to tuck him in bed at night. He likes to have his three fleece blankets (two of which he’s had since he was a baby) folded and stacked just so at the foot of his bed; there’s two more fleece blankets, one of which is big enough for a king-size bed and which Charlie wraps tightly around himself. I know Charlie won’t be living with us forever but he’s a child, and a child who has a very limited ability to communicate and express himself. Things could happen to him if he weren’t with us and we might, could, would never know.

Here’s hoping that Joshua and his father can get the help they need with Joshua still and safe at home.

The optometrist that Charlie saw this week—and many of the doctors and the dentist that we have taken Charlie to over the years—was not covered by our insurance. We’ve filed claims, we’ve refiled, we’ve written cheques. An article in yesterday’s Washington Post describes how families of autistic children in Virginia—as families throughout the US—are seeking to get insurance coverage for treatments for autism, and specifically for ABA. The article notes that “the recommended 40 hours a week of therapy would cost about $14,000 a month” for a family with an autistic 3-year-old and an autistic 2-year-old.

My son did that many hours of home ABA therapy in 1999-2000. Family and our savings account paid for it, and Charlie’s therapy did not cost as much as the figures quoted in the previous paragraph. We could probably have spent that much, but chose to hire college students and a graduate student who were trained and did most of the therapy hours (and were paid much less than the average ABA therapist makes today). We also decided that it was imperative to find a school that could provide Charlie with ABA; it had well-established that Charlie could not attend regular daycare and I wanted to be able to work, at least part-time. Since 2001 when we moved back from the Midwest to New Jersey, Charlie has received most of his ABA in a school setting.

ABA has been a good teaching method for Charlie. That said, I think this is at least in part because we understand ABA’s limits—it’s not about recovery and ABA has a troubled history that continues in some places. When Charlie has struggled to get some skill—speaking in sentences, reading words let alone sentences, doing addition—we’ve come to realize, some big challenges here.

The Washington Post also notes that some parents have tried “experimental — and expensive — treatments” and, anecdotally, seen results. This combination of limited results—what are referred to as “slight improvements,” in some cases, by the Washington Post—and parent accounts of miraculous improvements from alternative treatments can be enough to encourage parents to try the latter:

But families like the Oldhams also say that one of the most frustrating aspects of autism is the lack of proven therapies. Even the applied behavior analysis approved by the surgeon general guarantees only slight improvements.

The Oldhams said they cannot help but wonder whether other, more experimental techniques could improve their sons’ lives. At the end of the summer, the family will explore that option by visiting a group of doctors in New York, paying $1,500 for testing

We’ve known plenty of families who’ve traveled across the country to consult “some particular” doctor about alternative treatments (after the inevitable “testing”), and then made repeated trips back to this one particular doctor over a couple of years; those costs add up. A weblog named “Lend 4 Health” says that its aims is to “facilitate the biomedical treatment of children and adults with autism spectrum disorders (or other related issues) through community-based, interest-free ‘micro-loans,’” and cites as a model Kiva, “the world’s first person-to-person micro-lending website, empowering individuals to lend directly to unique entrepreneurs in the developing world.”

I know now that much of the vitamin goo, and woo, that tried for Charlie was well-intentioned, but minimally (if at all) effective. And I also have a sense of some of the emotions fueling these sorts of choices—to have one’s disabled child undergo experimental treatments: You really do feel, you have to try everything.

But I really have learned that hope starts with acceptance and sometimes all the trying of this that and every sort of treatment is a kind of denial of the reality of the disabled, different child one has pacing the living room carpet. I’ve learned that pacing calms Charlie down and is one of the ways he tries to allay the anxiety that he can’t, so often, communicate to us. I’ve learned that, I don’t need to prove that I’m an authentic autism mom by trying every last treatment ever known to humankind, I need to be a good mother to my own boy, and that starts with the priceless work of accepting and understanding him.

Which is, perhaps, easier said than done.

Today Connecticut Governor M. Jodi Rell signed House Bill 5696, which requires insurance companies to cover physical, speech and occupational therapies for autism, if their policies cover these treatments for other conditions, and also House Bill 5590, which calls for a statewide plan to teach autistic children. In Virginia, parents are seeking to get House Bill 83—which would mandate insurance coverage for autism—passed, according to WTOP News.

Said Gov. Rell in Norwalk Plus

“As parents we take great joy in our children’s ‘firsts.’ Their first smile. Their first steps. Their first words…..We are also the first to sense a problem. This new law open doors to more treatment – and sooner.”

Having written earlier today about Charlie’s being diagnosed 9 years ago, I’ve been thinking about how one reason that happened was because so many “firsts” just did not occur for Charlie. His education had already started around the time he was diagnosed. He was just turned 2 and while it took awhile for some of those “firsts” to come they did, and they’ve just kept on coming ever since.

This past Thursday in Virginia, a 24 year old autistic man was tazered by James City County police after he was to “become unruly with employees at Wilsons Leather at the Prime Outlets-Williamsburg shopping mall,” according to the Daily Press. It was only after the man was placed under arrest and charged with trespassing and resisting arrest that police learned that he had Asperger’s Syndrome.

Needless to say, incidents like these make training about autism for police and other first responders more than essential. The Daily Press quotes a James City Police spokesman, Mike Spearsman, as saying that the 24-year-old man was “‘rather large’”—-these are words that strike home with me more and more.

Almost every day someone comments to me that Charlie is “so big” or says “he’s taller than you!”. The words are meant kindly but, in practical terms, Charlie’s height and size (he’s the biggest in his class but the youngest in age), combined with his limited speech and communication skills (especially to strangers, especially when he’s under duress), can make people who don’t know him uneasy, even when he’s simply sitting on the subway and does not respond quickly enough when someone asks him to move over. It’s been some time since Charlie got very, very upset in public; it helps that we work a lot on teaching him to manage his anxiety and how he responds to it.

In the past, when Charlie got very upset and aggressed—not out of wanting, I have to emphasize, to hurt anyone, but because that was the response of his body under extreme stress, a kind of “fight or flight” response—personnel at a previous school placement had been instructed to use physical restraints to stop the behavior. What usually happened was that Charlie struggled more (especially when a basket hold was used) and things escalated. And, Charlie started to make it clear that he did not want to go to school: There were many occurrences of those types of physical struggles, phone calls from nurses and principals, bruises and tears. (At one point, Charlie threw his shoes out of the car window as I drove him to school—-a pretty clear message.)

That was a few schools and households ago and Charlie’s had his best school year ever. His teachers and therapists are trained in crisis management procedures and it always seems that the tallest aide (a guy) is assigned to Charlie, but it’s very, very rare that any sort of physical force has to be applied. Careful and highly structured teaching and carefully training, highly motivated staff have made all the difference for Charlie.

So it troubles me all the more to read about how often physical violence and force are used to “treat” or “discipline” autistic and disabled individuals. One of the most egregious examples is the use of “aversive therapy”—electric skin shock transmitted by a device called the Graduated Electronic Decelerator. A school in Canton, Massachusetts, the Judge Rotenburg Center (JRC), uses this highly controversial “therapy.”

Some parents swear that it has made all the difference in their children’s lives and theirs. Derrick Jeffries, who has Asperger Syndrome, and University of Delaware professor Nancy Weiss have started an online petition to call on the American Psychological Association to condemn the JRC’s shock therapy and other “aversive” treatments. In December of 2007, more questionable practices at the JRC were noted in an article by the Boston Globe. Back in January, a key legislative committee in Massachusetts considered a bill to decrease the use of shock treatment. A state investigation into the JRC was called after an August 2007 incident, in which a former JRC student made a prank phone call to administer shocks to two students. The May 15th Boston Globe reports that State Police were ordered to seize documents from the offices of the JRC related to that prank phone call:

The collection of evidence has to do with a yearlong grand jury investigation led by the office of Attorney General Martha Coakley, said Kenneth Mollins, a New York lawyer who has filed several lawsuits against the school and who said he spoke to a representative of Coakley’s office about the Rotenberg investigation. Mollins said he was told the grand jury is also examining possible financial improprieties by the school.

JRC officials say that they have issued “numerous safeguards” to prevent the August prank call from happening again:

The incident was caught on 24-hour surveillance tapes, which were shown to investigators last summer. The tapes were subsequently destroyed by school officials, even though investigators had instructed them to preserve the tapes.

After hearing about the destruction of the tapes, Senator Brian A. Joyce, a Democrat from Milton who has sought to ban shock therapy at the school, said he intended to ask the attorney general’s office to look into the matter.

More analysis at Club 166.

Charlie was able to tell me that he wanted out of his former school by throwing his shoes out the car window. But would a JRC student do, if they had minimal or no language or communication skills do?