Change.org has been running a competition to vote on the top Ideas for Change in America. The competition ends on December 31st—-yes, that’s Wednesday—and here are three ideas that I think can clearly make a difference in the lives of autistic individuals:

Fully Fund Medicaid Waivers for the Developmentally Disabled

Replace No Child Left Behind With a Strong Education Policy

Independence and Services for Disabilities and Autism

The top 10 ideas will be announced in January.

(For discussion about the idea about the “Autism Reform Act,” see this post on autism legislation.)

It’s said to be something that parents of children with developmental disabilities experience. An article by Amy Basking and Heather Fawcett coins the terms “Empty Nest Envy,” as noted in today’s Orangeville Banner:

While most parents can look forward to children spreading their own wings, there are some who look to the future with trepidation and uncertainty. Not just for themselves, but more importantly for their adult children who have developmental disabilities. These parents, when their children graduate from high school, suddenly find themselves supporting their adult child full-time.

The reality for these parents can be daunting. In the article, the authors talk about how for one family their 28-year-old son remains with them. Despite thinking that he would be living on his own with supports at this age, the reality is that he will probably remain with them “until one of us dies or we’re in crisis.” This couple has little time alone and never the opportunity to holiday away together.

Another mom, who is 60 with a 30-year-old son with autism, is quoted as saying, “When the kids graduate there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”

The just-this-week published Easter Seals Living with Autism study reports that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home and I do wonder what wil happen for Charlie. Sure I think a lot about, advocate for, how to provide more housing for disabled adults, more jobs, more and more and more: But how to turn needs, advocacy, testimony, research, into realities? Into an actual place for Charlie to live when he’s older, with the supports that he’ll need?

Let’s say, I don’t want to have develop empty next envy. But it may well be inevitable.

Actually, that title should read, “It’s just like I thought it would be,” as said by Jim. It was Saturday night and we were having dinner at a restaurant on Mott Street, in Chinatown in New York. We’d avoided the whole Black Friday business/madness and decided also to avoid the crowds going to see the Christmas tree on Rockefeller Plaza near Radio City Music Hall. We’d spent the day around home, with a late breakfast and midday nap for Charlie, and then a bike ride. And then, we drove to Jersey City and took the PATH train into the World Trade Center site—there’s construction going on all the time and you can see some of it—-and then walked past City Hall and into Chinatown.

Charlie had said no to any snacks, even after an hour-long bike ride, so intent was he for “Chinese food” and “white rice.” I ordered him shrimp chow fun—wide and soft rice noodles—and he sat on the edge of his seat, head turned back towards the kitchen where waiters kept emerging with bowls of steaming this or that. An order of gai lan came first, and dumplings, and shrimp sautéed with vegetables. Jim and I picked up our chopsticks and I put a shrimp and some carrots on Charlie’s plate, which he ignored.

He kept looking, and looking, and the waiters kept bringing out more steaming bowls destined for other tables. Two bowls of rice appeared and Charlie said “no” to them, and went back to looking for his chow fun. It finally appeared, though only briefly, as Charlie ate it quickly and efficiently, and topped it off with two fortune cookies (I gave him mine), and a total of six fortunes (because each cookie had three).

We walked home fast back to the PATH station and then  to the black car. Once home, Charlie said “school bus!”—-his internal clock that says that it’s two days off (i.e., Thanksgiving and the day after) and then back to school was fully in operation. He was expectantly crestfallen when I told him he had two more days—the actual weekend—and maybe that disturbance in the usual way of things was what kept him up till 1am.

We all slept in on Saturday, which was not the best thing to do as Jim was planning for him and Charlie to take to see a basketball game (Seton Hall vs. University of Delaware) with Charlie’s godfather at the Prudential Center in Newark. They had to catch a train at 11:54 AM and Charlie was just stirring at 11:20. We coaxed, we set out his clothes, we mentioned getting to see Uncle Mike, we mentioned the train……..I dropped Jim and Charlie off at 11:53 and saw them running up onto the train platform just as the train pulled in.

Charlie wanted to bring his two Leapsters but Jim suspected that no electronics might be allowed in the Prudential Center. We’d explained this to Charlie, and he left them on the black car’s back seat and sat through more than half of the game (the Hall eeked out a win), much of it with Uncle Mike while Jim went to the concessions stands (Charlie made some requests for extra ketchup). They took the train home and Jim called me (working on my book and much appreciating the “time to myself”) to get out the bikes. As soon as Charlie saw them, he came inside and requested his helmet.

As the weather’s gotten colder, Jim has added some cold weather gear in the form of gloves and spandex skull caps that go over their ears (he got two of each in the same size, one for him and one for Charlie). Charlie pulled on his cap and gloves and then the helmet, and they were off on what turned out to be a really long ride, as requested by Charlie.

“Sometimes he goes so fast, it’s not so easy to keep up with him!” Jim said after he and Charlie came back. And then, “It’s great. I just try to keep up.”

Me too, for sure.

I have been thinking more than ever about where Charlie will live as an adult since hearing about the services offered in different states at last Friday’s IACC meeting. The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.

Tara O’Leary had severe developmental disabilities and was a client in a community care residence in Hunterdon County in central New Jersey. Her death is being investigated by both the state Department of Human Services and the Hunterdon County Prosecutor’s Office. According to yesterday’s FOX News, O’Leary had brain deformities, scoliosis, and other severe medical conditions. The residence where O’Leary and two other women lived was funded by the New Jersey’s Department of Human Services’ Division of Developmental Disabilities. On September 11, O’Leary was removed from the home: According to her cousin, Eileen Devlin, medical records said that O’Leary (who was 4′10″) weighed 95 pounds at a doctor’s visit in September 2007. In August 2008, an aunt, Patricia O’Leary, saw her niece, who was “gaunt, with unwashed hair and shoes on the wrong feet.” O’Leary had not had a guardian since the death of her father in 2005 and her aunt asked to be her legal guardian.

Once she was taken from the home, Tara O’Leary lived in an institution for a little over a week before she was taken to Hunterdon Medical Center suffering from dehydration, malnutrition and bedsores and septic shock, Devlin said. She weighed just 48 pounds at check-in.

Devlin said that with a feeding tube, her cousin’s weight rose to more than 70 pounds by November, but her overall medical condition did not improve. She died Nov. 10, days after she, Patricia O’Leary and another cousin became her legal guardians and decided to take her off life support.

The other two women who lived with O’Leary in the house—one of whom had also lost a dangerous amount of weight—have been removed and are now healthy. The woman’s case manager has been suspended.

O’Leary relatives noted that, after the death of her father, they were only able to visit her occasionally and were “never allowed to see her in the home where she was living _ or even to know exactly where it was”—a potential violation of state policy.

As noted in yesterday’s MyCentralJersey.com, the prosecutor’s office is also looking into “the circumstances surrounding the quality of care and death of a disabled adult.” Jennifer Velez, commissioner of the Department of Human Services, made this statement:

“This death is unacceptable on many levels, and we’re doing all we can to scrutinize every aspect and prevent tragedies such as this from occurring again.”

A roundabout sort of statement—so some “aspects” relating to the Tara O’Leary’s care were not being “scrutinized”—-that seems, more than sadly, too evident.

Six deep-sea divers have been enlisted by the city of New York to repair a valve at the bottom of a 700-foot shaft in Dutchess County, yesterday New York Times reports. The shaft is located in the Rondout-West Branch tunnel, which is 45 miles long, 13.5 feet wide, up to 1,200 feet below ground” and which brings half of the water supply to New York city from reservoirs in the Catskill Mountains. For more than a month, the six divers have to live

in a sealed 24-foot tubular pressurized tank complete with showers, a television and a Nerf basketball hoop, breathing air that is 97.5 percent helium and 2.5 percent oxygen, so their high-pitched squeals are all but unintelligible. They leave the tank only to transfer to a diving bell that is lowered 70 stories into the earth, where they work 12-hour shifts, with each man taking a four-hour turn hacking away at concrete to expose the valve.

And more about how the divers work:

Three divers at a time climb into the steel bell, an orb that is lowered down the shaft for 20 minutes to reach the pumping equipment in the tunnel. The bell is tethered to a bundle of cables carrying air, communication lines, electricity and water. Each diver works for four hours and rests underwater for eight before returning to the tank at the surface, where 32 more employees of Global Diving and Salvage, the Seattle company running the project, pass meals, clothes and books through an air lock.

In the saturation control room, Patrick Boyd, a life-support technician, monitors the divers’ air on a panel of screens, one of which reads 2.26 percent, for the amount of oxygen. While underwater, divers often get more oxygen in their mixture to keep them alert. John Lapeyrouse, a dive supervisor who is one of the few who can understand the helium-riddled voices, one of the side effects of what is called “saturation diving,” talked to Mr. McAfee as he worked the other day.

Apparently, the divers can ” request whatever food they like, including steak and fresh salads” but because “the air pressure in the tank dulls the taste buds,” they have to add a lot of “Tabasco, salsa and jalapenos.” And when their work is done, they must “remain in the tank for a week to gradually wean themselves off helium.” Says Robert Onesti, who’s running the project for Global Diving.

“It’s not for everybody. It’s heavy construction work, and it’s deep.”

You can say that again: I’ve come to love swimming thanks to Charlie, but dislike going underwater. Charlie, on the other hand, seems to thrive on being in deep water and, indeed, being under it. Often when we swim at the YMCA pool, he positions himself just where the water is almost over his head, and crouches down under and then propels himself out, and then ducks down under, jumps up out—-repeat, repeat, repeat.

Before he goes to sleep, Charlie always wraps his feet and legs tightly in at least two fleece blankets: Deep pressure seems not merely comforting, but essential, to his system. I’ve said it before, but I don’t know what he, or we, might have done in the past before the invention of polarfleece. And I’ve given up getting potentially scratchy sweaters for Charlie and shirts with stiff cuffs and collars: If he needs to wear those when he’s older for special occasions, he and we can deal.

Who knows but Charlie might, indeed, like scuba diving (I wouldn’t be the one going under with him, that’s for sure)—being under so much water— living underwater for a couple of weeks in a pressurized chamber might (who knows, again) appeal to him.

There’s something out there that any of us, with our diverse talents, can do, even if you have to go to the bottom of the ocean to find it.

I think this is, potentially, the perfect t-shirt for Charlie.

Yes, I’ve ordered him one.

Connecticut’s Pilot Program For Autistic Adults which “adults of normal intelligence with diagnoses on what is called the autism spectrum” is in danger due to budget cuts. Today’s New Haven Register reports that Governor M. Jodi Rell has ordered all state government agencies to submit proposals that will cut up to 10 percent from their upcoming budgets. Prior to the program’s inception in 2006 (with $1 million from the state), no services were provided to autistic adults of normal intelligence (adults with diagnoses of both autism and mental retardation did receive services). The program received an additional $500,000 in July 2008 and is financed through June 2009. Currently, 52 people with autism and Asperger’s syndrome in in the greater New Haven and Hartford areas are served under the progam and it’s changed their lives, as the New Haven Register reports:

After her son became too old for the public school system, Eileen Horan paid for him to attend a private vocational school for two years, but the cost became unbearable and Paul had to leave. He spent his days alone in his apartment, unable to find a job. He had no friends and nothing to do.

“When he would get bored, he’d get depressed. And then he’d get meltdowns — just thinking all bad things,” Eileen said. She said it’s common for individuals with Asperger’s syndrome or autism to have “meltdowns,” where they have suicidal thoughts or urges to hurt themselves.

As the sole provider for Paul, Eileen wasn’t able to get away, even for a weekend visit to her daughter’s home out of state.

“My whole time was just spent helping Paul shop and cook. It was just really, really rough going,” she said.

According Rosenwald, nine out of 10 adults on the autism spectrum are unemployed or underemployed. Most live with their families, “if they’re fortunate enough to have families that will keep them.” When parents get too old to care for them or die, they often end up in institutions or on the streets.

Living on the streets, autistic adults, whom Rosenwald characterized as “very gullible and very much the victim,” are often sexually abused.

“We hear one horrendous story after another,” Rosenwald said.

When living at home, autistic adults often spend their days home alone watching television and getting “seriously depressed.” This year, three young adults who belonged to the Autism Spectrum Resource Center committed suicide.

At last Friday’s IACC meeting, I heard Kathy Reddington, Autism Coordinator for the Division of Autism Spectrum Services, speak. She noted the impending budget cuts and also that they’d keep trying to do what they can.

So what is autism?

Chances are, if you’re reading this, you know, and are quite prepared to explain at the drop of the hat “what autism is.”

But what if you’re asked:

Why is there this separate term, “PDD-NOS”?

What is child disintegrative disorder and what does that have to do with autism, plain and simple? (as if there is such a “plain and simple autism”)

If a child has Fragile X, that means they don’t have autism……right….no….which?

Does “high-functioning autism” mean “Asperger’s Syndrome” only?

What’s the connection between autism and ADHD? Can you have both?

Can where you are and what culture a child is raised in influence diagnosis?

Is autism necessarily a life-long diagnosis?

These are just some of the questions and topics posed in a November report from the DSM-V Neurodevelopmental Disorders Work Group, written by Susan Swedo. The report is available via the website of the America Psychatric Association; more about the “future manual” of the DSM-V can be read here and go to Unstrange.com for an overview of how the diagnostic criteria for autism have changed through the years.

I gave a talk about autism to the Sociology Club at my college yesterday; one topic I discussed was how official definitions and our understanding of autism have changed over the years (however aware we are of this or not). I talked about theories of what causes autism; of the concept of an autism “spectrum”; about the need for including autistic individuals in schools and communities and not shutting them away in institutions; about my own experience taking care of my son and our search for the right school for him; about a family in China’s search for an education and therapy for their son as depicted in the film Children of the Stars and how is autism diagnosed in other countries?.

I only had a lunch period (not even 50 minutes; everyone had to run off so as not to be late for their 1pm class) and I felt as if I were putting out a lot of information, without really connecting it. In retrospect—especially as I reviewed the questions still being considered about autism spectrum disorders by the Neurodevelopmental Disorders (ND) workgroup—I started to think that maybe that’s just part of what happens when one tries to define and categorize “what” my son has and what he is; to find abstractions and generalizations for the specifics of one child I spend my days with.

The DSM revisions matter as they’ll have an impact on the services and therapies a child might “qualify” to have, based on what particular diagnosis a child is given. Even as we finesse the criteria and hone our understanding, and our categorization of “what” constitutes a diagnosis or not, will we lose the sense of some kind of common ground provided by the concept of an “autism spectrum”—or is this ground not so common as it might appear to be?

h/t to j/m

While studying drug abuse and addiction, researchers at the Ohio State University College of Medicine have found a link between nicotine addiction and autism. Neurexins are proteins that, along with neurologins, are thought to play a key role in the formation and functioning of synapses, of connections between nerve cells. In the new study, a protein made by the neurexin-1 gene was found to have a very particular role, as noted in today’s Science Daily:

The discovery identified a defining role for a protein made by the neurexin-1 gene, which is located in brain cells and assists in connecting neurons as part of the brain’s chemical communication system. The neurexin-1 beta protein’s job is to lure another protein, a specific type of nicotinic acetylcholine receptor, to the synapses, where the receptor then has a role in helping neurons communicate signals among themselves and to the rest of the body.

This function is important in autism because previous research has shown that people with autism have a shortage of these nicotinic receptors in their brains. Meanwhile, scientists also know that people who are addicted to nicotine have too many of these receptors in their brains.

“If we were to use drugs that mimic the actions of nicotine at an early time in human brain development, would we begin to help those and other circuits develop properly and thus significantly mitigate the deficits in autism? This is a novel way of thinking about how we might be able to use drugs to approach autism treatment,” said Rene Anand, associate professor of pharmacology in Ohio State University’s College of Medicine and principal investigator of the research.

“It would not be a complete cure, but right now we know very little and have no drugs that tackle the primary causes of autism.”

Cholinergic agents are drugs which play a role in countering nicotine addiction in the brain. It’s speculated that these medications, after “retailor[ing],” might help autistic individuals by increasing the level of neurexin-1 beta protein in their brains. How this might specifically help autistic individuals is only alluded to—-perhaps it might be more helpful to think about how medications can, in some cases and in discrete ways, help some autistic individuals, over and above focusing on the notion of a drug that would “cure autism“?

The research was presented today at the Society for Neuroscience meeting in Washington, D.C.

The November 13th Newsweek has an article, More Than Just Quirky, about girls and women with Asperger’s Syndrome: Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?

Girls, it’s noted, have more “socially acceptable” obsessions—”horse and books,” perhaps, rather than “vacuum cleaners or oscillating fans”:

“Girls tend to get obsessed with things that are a little less strange,” says Elizabeth Roberts, a neuropsychologist at the Asperger Institute at the New York University Child Study Center. “That makes it harder to distinguish normal from abnormal.” That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls’ obsessive interests reflected the interests of girls in the general population; the same was not true for boys.

In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. “From my personal experience, they seem to have a greater drive to fit in than boys with Asperger’s do,” she says. “So they spend a lot of time studying other girls and trying to copy them.” When social settings change, this can spell disaster. “As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn,” said one Aspie woman who asked not to be named. “Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble.”

Of course, it’s not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl.

Newsweek also points out that “social mores might also make the disorder more harrowing” for girls, especially as they grow up and are expected to be more ’sympathetic and empathetic than boys.” It’s even noted that “desperation” for some kind of social connections “can make girls with Asperger’s easy prey for sexual predators.”

Over the past few years, it’s occurred to me that more than a few friends and others whom I’ve known—-and women, in particular—are on the autism spectrum. Most of them are undiagnosed; knowing about Asperger’s has helped me to understand why one friend, one instance, used to get so irritated when I started analyzing books and movies (her feeling: just talk about them, no need to “break them down and ask all those questions”). Another related some misunderstandings about what a member of the opposite sex was saying and found herself in a situation that wasn’t so easy to extricate herself from. And, adolescence was the beginning of many difficult years after a childhood that had been comparatively peaceful, especially thanks to parents who were glad to encourage some obsessions and cultivate them.

The Newsweek article opens and closes by referring to a mother, Liane Willey, whose daughter was diagnosed with Aspeger’s. Willey notes that she is “quirky” herself:

Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. “It was like a light bulb went off,” she says. “I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity.” And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to.

I’ve got my own set of “quirks” and—following Charlie’s diagnosis, have wondered if I might be somewhere on the spectrum and, while there are many qualities that Charlie and I share, I don’t think I’m autistic (well, that’s what I think). Has having an autistic child made you more aware of your own “quirks” and obsessions, and possibly of an actual diagnosis?