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.)

The Florida legislature has declared the first half of October as Disability History and Awareness Weeks, today’s West Volusia Beacon notes. Indeed, the legislature is said to be “trying to change the negative image, perception and treatment of people with disabilities.” The article highlights programs for disabled students throughout the county, such as Deltona High School’s Multi-VE program.

VE stands for varying exceptionalities. Multi-VE students’ disabilities and challenges include hearing or language impairments, mental handicaps, emotional and behavioral disorders, multiple physical handicaps and disorders all across the autism spectrum.

Located in Building Z on the 92-acre campus, Deltona High School’s Multi-VE program serves more than 50 students, ages 14 through 21. They attend classes to learn to function independently and to acquire skills to help them gain employment after graduation.

At Deltona High School, “VE” really means “victories everywhere,” because students with disabilities are showing they can be successful in and out of the classroom — that they have abilities!

The classrooms and programs recall those in my son’s school district here in New Jersey—-but we could all use more of the “VE” attitude, wherever we are.

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.

If you weren’t able to listen in to yesterday’s meeting of the IACC meeting, this is a brief summary:

In the morning, the committee members reviewed the draft of the Strategic Plan and “wordsmithed” various additions and revisions suggested by various members of the IACC. These revisions included:

• the use of “may” or “can” in regard to describing the effects of Early Intervention
• mention of “comorbid” and “co-occurring” (medical) conditions
• a lengthy discussion about vaccines and about what science and evidence there is to refute or support a link (it was decided to include the statement “the weight of the available evidence does not support a link between autism and vaccines”—more details about this are below)

Much more of the draft of the Strategic Plan remains to be reviewed and there was talk about the committee reconvening in December to finish reviewing the revisions.

Paula Durbin-Westby of the Autistic Self-Advocacy Network (ASAN) gave a well-received presentation on the need for ethics in autism research. There’s a need for research on the strengths of autistic individuals, she said, and on the positive aspects of difference, and it’s necessary that autistic individuals be fully represented on the IACC.

In the afternoon, there were detailed presentations on Medicare and Medicaid and on waivers (prompting the Chair of the IACC to note that these systems are as or even more complex that various topics in biochemistry); on the pressing need to focus on adult issues (will the employment rate for autistic persons be better in the future?, Dr. Cathy Pratt asked); on the waivers and other programs in Pennsylvania’s Bureau of Autism Services; and on the Autism Spectrum Disorder Pilot Program in Connecticut.

Pamela Beck spoke about her 24-year-old son Brandon Beck and the self-direction model. The Executive Directors of two agencies providing services and supports for adults in California (Dr. Jeffrey L. Strully of Jay Nolan Community Services) and in Maryland (Ms. Emily Homer of VOCA of Maryland D.C.) described the realities and successes of their programs, and of the intense need for staff: What are traits of staff who are really good at supporting people?

After comments from six members of the public, the meeting was adjourned.

There’s more to note—-will end for now with a quote from Lee Grossman, President and CEO of the Autism Society of America:

“”it’s what we hear the community is asking the most for—lifespan services.”"

Grace at Genetics and Health posts about research on regions of DNA that may increase the risk to hereditary autism (from Craegmoor Healthcare). The findings were reported on at the 58th Annual Meeting of the American Society of Human Genetics meeting in Philadelphia:

According to the Scientist, a large-effect allele that provides protection against autism was found on chromosome 5 near the semaphorin 5A (SEMA5A) gene, which is involved in guiding neural axons during development. The same group also found two genes not previously linked to autism, one at the tip of chromosome 20’s short arm, and one at the end of chromosome 6’s long arm.

The findings were reported by Dan Arking, Assistant Professor in the McKusick-Nathans Institute of Genetic Medicine at Johns Hopkins University School of Medicine, and still need to be replicated and validated.

Last June, 10-year-old Jon Jon Jackson died while taking a nap after being in the pool of the apartment complex where he lived for about 45 minutes. The cause of his death was determined to be “asphyxiation due to drowning.” His mother, Cassandra Jackson, spoke nationally about the dangers of secondary drowning, which is a secondary injury caused to the lung when even a small amount of water (a teaspoon) gets in the lungs. Jon Jon had attention deficit disorder and autism.

Today, The Post and Courier (Charleston) reported that a family friend, Saquan Meekins, has been charged with homicide by child abuse:

An investigator’s affidavit accuses Meekins of holding the youngster underwater at the deep end of the pool. Unnamed witnesses told police that he made statements to the effect of, “‘You’re going to learn how to swim, one way or the other,’” while directing profanity at the boy.

They described Jon Jon trying to stay above the water, grabbing floating objects, as Meekins kept throwing him back in. At one point, they recalled the boy saying, “I want to live; I don’t want to die.” Meekins, they asserted, replied with something like, “that’s what happens when you don’t try to swim.”

Jackson said her son, who was developmentally disabled and had a condition similar to mild autism, often made dramatic statements. Someone who didn’t know him, she said, could have taken the comment about dying out of context.

The charges against Meekins carry a possible prison sentence of 10 years to life.

Today’s ABC News reports on the difficulty of getting a diagnosis of autism. 29-year-old Jason Ross was 25 when he was diagnosed with Asperger’s Syndrome; his mother, Lois Ross, describes how he was first said to have speech delay, attention deficit disorder, “psychosis not otherwise specified,” obsessive compulsive disorder and schizophrenia. You can also read Ross’s own words on his blog, Drive Mom Crazy.

Vaccines don’t cause autism and yet a connection between the two seems to have become deeply lodged in the public consciousness. Some believe in a vaccine-autism link with something akin to religious faith, or fervor, to the point that, no matter how often one cites scientific studies refuting, such a link, some are not, will never be, convinced. Some say that parents should have the right to choose to vaccinate or not; meanwhile, measles has been on the rise this year with some 131 cases so far reported, This focus on vaccines has come to preoccupy discussions about autism, over and above the very real concerns of appropriate schools and educational programs, and housing and jobs for adults.

The excessive attention given to a hypothetical vaccine-autism link keeps discussion about autism centered on children, and on young children and infants. It’s the schedule of vaccines a child receives in his or her first 18 months that are especially under scrutiny, and it’s autism in children that most public discussion tends to be about—-but what about older children, and about autistic adults?

This past week I talked to two mothers of older children—-one’s mother son is in his 20s, the other mother’s son is in his 50s. “Your son’s very young,” the mother of the 50-something child said to me and did I feel relieved. So often over the past few years and certainly since Charlie’s grown so tall, the word has been “he’s getting older” and “he’s not so young anymore.”

Charlie, as noted regularly here, is 11 1/2 years old—-certainly no longer a little preschooler who might, or might not, be able to enter kindergarten with same-aged peers. On the other hand, as those other moms pointed out, he’s just at the start of his life and so much still lies ahead.

The years between birth to 5 and 2 to 5 are often referred to as a time that there’s a sort of “window of opportunity” to do as much as one can—intensive ABA, biomedical treatments even like the experimental, and potentially dangerous, chelation. The message delivered to parents is that, if you don’t hurry hurry hurry and do everything, do all, you can now, you’ll lose that precious window and it’ll all be nevers: A child will never be able to lead a normal life, go to school without special ed, go to the prom, go to college, get married. Take care of themselves. The result is that parents—-as we did when Charlie was younger—-throw themselves headfirst into every possible therapy they can try, and many dollars are spent in the process, and many hopes rise and fall.

An article in The Gazette about 4-year-old Peyton Thorpe. His father is Noel Thorpe, the special-teams coordinator and defensive-backs coach for the Edmonton Eskimos; Peyton was diagnosed at 2 years old with autism and currently does in-home therapy five days a week and attends an integrated preschool four days a week. He is not talking yet.

I remember and still feel what it was like that have that “sense of urgency” to do everything we could before Charlie turned 5, as if kindergarten were some sort of magic goal—a finish line to normality. But far from 5 being some magical age that “everything” must be accomplished by, Charlie’s has kept on learning at 6, 7, 8, and onward. What hasn’t kept apace with his getting older is people—-school administrators, autism consultants of various sorts, his own parents—-knowing what to do, as far as programs, teaching methods, training for staff, transitioning Charlie from each stage. Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.

But the fact that we have a sense of how to help young autistic children and are slowly finding our way to teach older children, suggests that we maybe kind of have a better sense of what to do. (Maybe….) The mother in her 80s said to me that, compared to what was available for her son when he was Charlie’s age and younger—-nothing—–everything we’ve gotten has been served up on a silver platter. “And I’m glad it has,” she added. Now the work, or the work I know I have to do, is to figure out how the things Charlie’ll need—a job, a place to live, a way to be among the community—can be put in place and can work.

Returning to Noel Thorpe in The Gazette:

Thorpe doesn’t know what the future holds, but understands there will be challenges and obstacles ahead; hurdles he seems willing to tackle head-on.

“I can’t imagine [Peyton] not speaking. That’s a goal,” he said. “But let’s be honest. If he doesn’t, I won’t love him any less. It’s about the connection between two people. There doesn’t have to be words.”

The mother of the 50-something year old young man told me that her son was 10 when he started to talk. Over time, much can happen, and I want (I need) to savor every moment of our time with Charlie. Yes, childhood’s not forever—that’s why there’s no need to rush it, or to speculate endlessly about theories of what might cause autism.

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.

1st born child—-older mother—-older father: Such a child is three times more likely to develop autism than third- or later-born offspring of mothers who are 20–34 years and fathers who are less than 40 years old, according to a study published in the October 21st American Journal of Epidemilogy (full text can be accessed here and this is a PDF file; another summary at the Daily Telegraph). Researchers reached these conclusions after studying records for more than 253,347 children born in 1994 of whom 1,251 have autism.

Researchers note that there has been a decline in average family size in recent decades:

The results of this study raise the question of whether some portion of the recent rise in ASD prevalence may be linked to recent trends in parental age and family size. A further question is whether a modest increase in prevalence associated with advancing parental age and low birth order may have contributed to a greater awareness of ASD and, in turn, increases in measured prevalence. The tendency for older parents of firstborn children to have higher levels of educational achievement and resources than other parents could further contribute to increased awareness and an expansion of the diagnosis of ASD.

While it’s not clear how advanced parental age might contribute to increased risk for autism, the researchers note that the “probability or selection of [gene] mutations increases as men age”; in older mothers, “age-related chromosome changes, pregnancy complications, or environmental exposures during pregnancy” are possibilities. Also noted is the potential role of infertility treatments or assisted reproductive technologies,” the use of which has increased recently and among “women and men of advanced reproductive age,” and, too, the “psychopathology or behavioral traits of parents that may result in both delayed parenthood and genetic susceptibility to autism in offspring.” Two other studies that have found increased risk of autism in first-born children are cited.

Charlie is our first-born (and our only child). I was between 20–34 years old when he was born and Jim was less than 40 years old.