Things small and familiar were the gifts that Charlie most liked: A pale blue Mugen Pop Pop, a new copy of a DVD he already has (and that’s gotten so scratched up and smudged that it skips and gets stuck), a case for his Leapster (which we should have gotten a while ago, as Charlie’s dropped his a couple of times). We’d be happy to get him some more elaborate gifts, and have over the years. Iused to spend quite a bit of time choosing toys and then even more time teaching Charlie to play with them (some of the toys are still in closets in our house and in my parents’, shiny and wrapped in plastic to protect them from the dust).

Charlie pretty much seems to lack consumer consciousness. He likes what he likes.

And so, while experiencing the sort of quavering feeling many (most…) of us have been as more words like “dismal” and “downturn” are used along with “economic crisis” and “home sales” and “mortgages” and “banks”—-what will this mean for Charlie’s public school program? he’s quite a ways from looking for a job but won’t it be even harder to find employment for a disabled worker in a challenging economic climate”?—-we’ve also felt that there’s not going to be some totally drastic change in our everyday way of life.

Ever since Charlie was diagnosed, we’ve scrambled to pay for the things he needs, and managed. Corners have been cut (and will be) ,and we’re both feeling very fortunate to have full-time employment. With Charlie’s needs, we’ve long known that some things are just out of the question, and we always have an eye on his future. While we very much hope and intend that Charlie will be able to have a job, it’s highly likely that it’ll be far from high-paying. Certainly, Jim and I are both hoping we can work as long as we can.

Caryn Sullivan writes about a generation of kids accustomed to having more now having to adjust to having less. It’s “stuff” —-electronic iStuff and the like—-that she’s referring to, while she also notes that one of her children, who’s autistic and living a “cloistered lifestyle at a remote, old-fashioned school,” gave her a list of 24 items that he’d like. As Sullivan writes in yesterday’s St. Paul Pioneer Press, she’s readying herself to “try to explain the financial facts of life without bursting his bubble this [Christmas] morning.”

I’d like to know how this went. Having been living with what people think is less, but I’ve learned is more —a son who’s disabled, who’s autistic—I think it’s possible to keep managing on less and little, and still come out feeling like you’ve got much, much more than you’d have ever bargained for.

A St. Paul family is suing after the school district decided to bar Newman, their son’s service dog, from his public school, Como Park Elementary. Newman, a Golden Retriever, is connected to 8-year-old Wally LaBerge throughout the day via a harness, yesterday’s WCCO notes. While service dogs have been more and more widely used to assist autistic children, there’s been more than a little disagreement about their presence in public places, from schools to airplanes to apartments. It’s noted that the dogs are calming and help to allay anxieties: Until it’s widely understood how much a service dog can help an autistic child, they’ll be more of these sorts of disputes, and more anxiety, and antagonism.

And not enough learning on either side.

In the midst of talk of diagnosis and disability rights, of treatments and of what’s an appropriate education for an autistic student, we took a hands-free cold walk last weekend to see the Christmas tree at Rockefeller Plaza, and passed a wall of snowflakes too.

• Age of Diagnosis and the Apparent Increase in Autism
  A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.
• Recovery Distracts
  How the notion of “recovery from autism” colors—not for the better— parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.
• Dangerous Ideas About Autism
  From Icad: “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.”
• Overglut of Gluten-free?
  If everyone’s going gluten-free, is a “special diet” really a treatment for autism?
• Human Clinical Trials Underway for Fragile X Drug
  Experimental drugs that are said to “correct” symptoms of Fragile X, Rett Syndrome, and tuberous sclerosis complex are now in early-stage human trials, the MIT Technology Review reports.
• The Daily Commute (Your Child’s)
  How far does your child—or do you—travel to school?
• Letter to OSU President Gordon Gee
  A letter by Melanie Yergeau, a 2nd-year Ph.D. student in English, in response to remarks by President Gee including the statement that “‘It [autism] should not exist.’”
• Older, and Trying to Be Wiser, and Better at Hemming Pants
  I turn 40 and find myself wearing hand-me-ups from a not-yet-adolescent boy
• The Private-Public Dance: What’s Appropriate?
  What’s an “appropriate” education for an autistic child?
• Who’s On the Board?
  No one with autism when it comes to Autism Speaks.
• Arrested: The Charge? Bad Behavior
  Children with autism and other disabilities, and more of them, are “actually getting arrested for having tantrums at school,” Minnesota’s WCCO reports.

Children with autism and other disabilities, and more of them, are “actually getting arrested for having tantrums at school,” Minnesota’s WCCO reports. 13-year-old Dakota Jacobson was charged with a felony after he was found carrying a pocket knife in his coat:

[Dakota] didn’t threaten anyone, but bringing any kind of weapon to school is a felony in Minnesota. While most kids understand why you wouldn’t want to do that, Dakota did not.

“He’s 13 and he’s autistic,” explained his mother [Kathryn Jacobson].

Children with autism can have trouble understanding rules. His mom says he was just trying to be like his dad, Brian.

“Brian is on the volunteer fire department, carries a knife hooked up to his belt, so he kind of likes to emulate his dad,” said Jacobson.

Police and the Pennington County Court weighed Dakota’s Autism diagnosis, but still charged him with a felony that ended up on his record.

“I was very afraid. I was hoping it was a dream, that’s what I was hoping,” said Dakota.

It’s more like a potential nightmare, and simply not the right way to address the needs of teenagers with autism and other disabilities. The WCCO story also describes how 19-year-old Thomas Brinker, who has fetal alcohol syndrome, was cited for disorderly conduct after throwing paint on a teacher’s sweater, and arrested. After being put in the Hennepin County Jail, Brinker was placed in METO:

METO is the Minnesota Extended Treatment Options program. Its one place courts send people to live if their developmental disability turns dangerous. Thomas’ family doesn’t think throwing paint rises to that level.

“I had to sign a piece of paper in fact, [saying] that I knew there were sexual offenders on the premises,” said Brinker. “He got to METO because of a court system that failed him, a school that definitely failed him.”

Roberta Opheim is the state’s ombudsman for Mental Health and Developmental Disabilities. She told the I-TEAM Thomas shouldn’t have ended up there, but a lot of people like him do.

“When they don’t or can’t participate in their own trial, they are sometimes sent to mental health facilities,” she said.

Opheim recently reviewed the METO program and found problems with the frequent use of metal handcuffs and leg hobbles.

“It became so routine that people didn’t even identify it as a problem,” she said.

Thomas was restrained on one occasion.

Brinker is still at the METO and now about to be released, and will return to a group home. The felony on Dakota’s record will be removed from his record after six months, if he does not bring a weapon to school again. But arresting minors for bad behavior and placing them in facilities where their own safety might be compromised?

Back in July, it was reported that the rate of autism in Somali children in Minnapolis was notably high. According to the Minnesota Department of Education:

in the Minneapolis’ early childhood and kindergarten programs, more than 12 percent of the students with autism reported speaking Somali at home. According to Minneapolis school officials, more than 17 percent of the children in the district’s early childhood special education autism program are Somali speaking.

Almost 6 percent of the district’s total enrollment is made up of Somali-speaking students, and about 6 percent of the children in the district’s overall early childhood and kindergarten special education programs are Somali.

Speculation about what could be causing this “cluster” of autism cases in so specific a population immediately started up, especially among proponents of environmental causes of autism such as journalist David Kirby. Mike Stanton at Action for Autism gives an overview of all this, and notes how Kirby and others sought to connect the Somali autism rate—or, more precisely, the rate of autism among children born in the Minneapolis area to immigrant parents from Somalia—to vaccinations, and also to a theory that a Vitamin D deficiency can be linked to autism. Dr. Steve Novella at the Neurologica blog writes specifically about the notion of a “cluster” of autism cases being found:

apparent clusters of diseases are reported all the time. Most of the time the clusters are not real, meaning they are just statistical flukes. So the first question to answer with any apparent cluster is - does this represent a real epidemiological phenomenon.

……….

One problem with the cluster hypothesis is that other immigrant Somali communities have not experienced increased autism rates. If there is an environmental trigger causing the two identified clusters, why are there not clusters in these other communities?

If it turns out to be true that autism rates have significantly increased in some Somali immigrant communities, above what is seen in Somalia or in non-Somali in the same communities, then we can conclude that something is going on and a potential trigger should be sought.

It also has to be noted that autism is really a collection of diseases, not a specific disease. So we may be seeing a new entity that has clinical overlap in features and symptoms with recognized forms of autism.

Dr. Novella writes that more investigation is indeed needed about the Somali “cluster” and if it is real, and what factors might be playing a role, whether genetic or environmental. He references an article from the Simons Foundation Autism Research Initiative that cites Judy Punyko, an epidemiologist at the Minnesota Department of Health. I August, Punyko formed a study group of 12 experts (including epidemiologists, physicians, school administrators and special education teachers) to study the rate of autism in Somali children in Minneapolis with “age-matched controls.”

Even then, she adds, educational data may be incomplete or inaccurate. The 13 special education categories reported to the state and federal government are intended to help provide a child with the best available educational services. If a child has two conditions, such as autism and developmental delay, they can only be assigned to one primary category; Minnesota does not require a medical diagnosis of autism to be included in the category. Finally, some schools, especially those in poorer districts, often overlook mild forms of autism.

Population data used for the analysis also comes from the 2000 census, which may be vastly different than current numbers. “The population of Somalis is a fluid number in Minnesota,” says Punyko.

Mike Stanton also notes that “in Minnesota there is no reliable epidemiological data for autism”—because, as he points out, the “administrative data for children in receipt of autism services” is based on “teacher assessment,” with a diagnosis from a “trained clinician” not required.

I know this from experience: My son was first evaluated for “delays” in Minnesota, by a Child Study Team from the St. Paul Public Schools. That was in the spring of 1999 (he wasn’t 2 years old yet) and he immediately started to receive services (speech, OT, and special ed, only a few hours each week). He wasn’t actually diagnosed with autism until July of 1999 (and the only change in the services was that he qualified for more hours of special education, which we were urged to have him receive in a school setting, rather than at home—that classroom was not appropriate for Charlie—but this is another story, and a whole ‘nother post). Also (and this is completely anecdotal), a number of Somali families lived in a high-rise apartment that was right next to the building where Charlie’s pediatrician had his office, and there were many Somali mothers with strollers and young children waiting beside us among the little tables and fish tanks in the waiting room). (And, also really anecdotally, no Somali children in Charlie’s special ed program in St. Paul, back in the summer of 1999.)

One question that (following on today’s earlier DSM-V post) needs to be addressed is how cultural factors might be at work here. And Dr. Novella writes that

Somali parents certainly believe they are experiencing something new, and some pediatric neurologists in these areas have had their suspicions also. But this is not enough to form a scientific conclusion - only to justify further research.

The true autism rate in Somalia needs to be investigated also. We should not assume that because the culture does not recognize autism it does not exist.

Besides keeping in mind the particular conditions that a child is said to be “autistic” in Minnesota—again, a child can receive autism services through assessment by a teacher (as my son did) and without receiving an official diagnosis from a “trained clinician”—we need to get a better sense of how autism is understood in Somalia, and what the numbers there are, and how these are determined.

The woman I spoke to at the birthday party yesterday told me that her brother had been institutionalized at the Cambridge State Hospital. Originally called the Minnesota Colony for Epilectics, it became a state hospital for the developmentally disabled and for those with “mental deficiencies” in 1949; it reached its peak population of 2008 in the 1960s. In 1972, a class action suit was filed against the state’s six State Hospitals by the parents of some of the residents ” who felt that the conditions, care, treatment and training did not meet constitutional standards” (this photo says why). This started a movement to move individuals with developmental disabilities into community settings such as group homes where they might live as independently as possible, and not be shut away for their whole lives.

Today’s Daily Express tells the story of another forgotten child, Prince John, the sixth and youngest child of Queen Mary and George V. John had epilepsy and a “form of autism”:

He suffered his first epileptic fit when he was four and as these gradually became more frequent, it was decided that Johnnie should be hived off to the Sand ringham estate with his devoted nurse Charlotte “Lalla” Bill. Those were the days when little was known about epilepsy, and when treatments included confinement to hot baths in mustard water.

When he visited his doctor in London, the car’s blinds would be drawn so he would not be seen having a fit in public.

Occasionally he would be spotted at Sandring ham, gazing wistfully from a window or playing at soldiers on a wall, paper crown on his head and a wooden sword in his hand.

One observer described him as “a distant figure, tall, muscular but always remote, who would be glimpsed from afar in the woods escorted by his own retainers”.

He was even barred from the royals’ family portraits and photographs, including his parents’ silver wedding photo in July 1918. But this popular myth of the “monster” boy of Sandringham is being challenged by the people who knew him best.

John died in 1919 at the age of 13.

And hearing about his life and that of the older brother of the woman I met last night, makes me more than grateful every day, that Charlie lives with us, goes everywhere with us, in the community and in the world.

A study from Minnesota look at how adults with Asperger’s Syndrome compare to others and offers a sense of hope. The study was done by Kim Klein, a pediatric neuropsychologist at the Fraser Center and Pat Pulice. From today’s CBS4.com:

“We’ve found that in some ways, this population is doing as well as their peers. They’ve been successful in obtaining employment. They’ve been successful in pursuing their hobbies,” said Pulice.

“Virtually all of the young adults with Asperger’s disorder graduated from high school, same as our control group,” said Klein. “Forty-five percent went on to college or some type of post-secondary education; identical rates to the control group.”

Klein and Pulice also noted that no one in the study with Asperger’s had reported problems with illegal drugs, alcohol or cigarettes; 25 percent of the other participants did. 69 percent of the participants with Asperger’s were found to be more likely to be treated with medication for depression, versus 39 percent of those who did not have Asperger’s. Much information about the study can be found on the Fraser Center’s website.

The Wisconsin camp, Trade Lake, from which Keith T. Kennedy went missing from in June, now faces closure after 49-year-old Shirley Meade died there after being given the wrong drug, Clozapine. Yesterday’s TwinCities.com describes Meade as “severely mentally challenged” and a ward of the state of Minnesota, as her parents are deceased. Peggy Hjelseth, the camp founder’s daughter, gave Meade the incorrect medication:

When Hjelseth was interviewed by investigators afterward, she said: “I screwed up.”

Hjelseth realized her mistake within 30 minutes of administering the drug, [Burnett County Sheriff Dean] Roland said. Hjelseth told investigators she did not seek medical assistance and chose to have Meade “sleep it off.”

Meade slept most of the day and fell at one point. The injuries from the fall were not reported to medical personnel, the sheriff said.

Meade’s condition continued to deteriorate throughout the day until she was found dead by staff about 12:30 a.m. Camp workers called the sheriff’s office right away, Roland said.

Hjelseth faces charges of first-degree reckless homicide.

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.

Why is the rate of autism in Somali children in Minnesota so high?

A few weeks ago, the Minnesota Post addressed this question. The August 24th Star-Tribune also reported on this “cluster of affected kids”; state and federal officials are investigating.

In Minneapolis, fears have been fueled by some puzzling statistics. Last year, Somali children made up just under 6 percent of the school population, but 17 percent of those in the early childhood autism programs (14 of 81 children). The numbers have been creeping up for several years, especially among young children.

“People are worried,” said Saeed Fahia, who heads a Somali community group. “Nobody remembers any autistic children in Somalia. I’m sure there must have been some, but there were not that many.”

The Star-Tribune also notes the “cultural stigma” of autism in Somail culture. One Somali-born women was “so alarmed by the number of Somali children in her son’s autism class that she started calling politicians, news organizations and state officials to call attention to the issue,” but still kept her son’s being autistic a “secret from relatives.”

“Not only is it high among us here, but we Somalis don’t accept this disorder,” said the woman, who asked not to be identified.

Before rushing to suspect “something about America” (or something in the lake water) as linked to autism, consider: A commenter who’s an autism researcher, lives in Minnesota, and is autistic made a number of observations about the rate of autism among Somali children; he notes that, according to the WHO, there are officially 16,000 cases of autism in Somalia (a rate of 1 in 2000), but no full-scale study has been conducted. It’s also of interest to consider a 2003 study by Gurney, et al., on Analysis of Prevalence Trends of Autism Spectrum Disorder in Minnesota .