U.S. Surgeon General Jerome Adams visited Georgia recently to educate the community about the opioid epidemic. Johanes Roselló/MundoHispanico
Nuestra Comunidad: Opioid epidemic kills more Latinos every year
The report for 2014 focused on 42,644 children in 11 states (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee and Wisconsin). Researchers determined that 5,473 of these kids met the definition for an autism spectrum disorder.
Since the data come from select sites where researchers are able to conduct a thorough analysis, the findings are not necessarily representative of the nation as a whole. But experts value them because they are more comprehensive than the results from other surveys that rely on interviews with parents.
The new study appears in Friday’s edition of the CDC’s Morbidity and Mortality Weekly Report. Here’s a summary of the findings:
ASD prevalence is still increasing
Out of every 1,000 8-year-olds in the ADDM study, 16.8 had an autism spectrum disorder. That works out to 1 in 59 kids included in the analysis for 2014, or 1.7%.
Those figures represent a slight increase from the previous ADDM report, which found that 1 in 68 8-year-olds had ASD in 2012.
Six of the 11 sites in the new study also participated in the last one. In these states, the prevalence of ASD was 20% higher in 2014 than it was in 2012.
Back in 2000, when the first ADDM study began, only 1 out of every 150 8-year-olds was identified with ASD.
ASD is far more common among boys than girls
The prevalence of autism spectrum disorders for boys (26.6 cases per 1,000 boys) was four times higher than for girls (6.6 cases per 1,000 girls).
This gender gap was seen in each of the 11 study areas, though the magnitude varied by state. In Arizona, the prevalence for boys was 3.2 times higher than for girls. At the other end of the spectrum was Georgia, where it was 4.9 times higher for boys than for girls.
ASD prevalence varies by state
Autism spectrum disorders were most common in New Jersey, where researchers identified 29.3 cases for every 1,000 8-year-olds. Minnesota came in second, with 24 cases per 1,000 kids.
The state with the lowest prevalence in the study was Arkansas, with 13.1 cases per 1,000 8-year-olds. Four other states were close to that mark: Colorado (13.9 per 1,000), Arizona (14 per 1,000), Missouri (14.1 per 1,000) and Wisconsin (14.1 per 1,000).
Racial gaps remain
White children were still the most likely to meet the definition for ASD. In the 11 states combined, 17.2 of every 1,000 white 8-year-olds had the disorder, compared with 16 of every 1,000 black children, 14 of every 1,000 Latino children and 13.5 of every 1,000 Asian and Pacific Islander children.
Racial disparities between white and black children were statistically significant in three states (Arkansas, Missouri and Wisconsin). Racial disparities between white and Latino children were statistically significant in seven states (Arizona, Arkansas, Colorado, Georgia, Missouri, North Carolina and Tennessee).
New Jersey, the state where ASD was most common, had “almost no difference” in prevalence for white, black and Latino children, the study authors noted. For all three groups, the prevalence ranged from 26.8 to 30.2 cases per 1,000 children — differences that were too small to be statistically significant.
The researchers took this as a sign that when the accounting of ASD is more complete, differences between groups will either narrow or disappear altogether. That should help make ASD therapies and services available to all children who need them, they added.
Disparities in intellectual ability
Nine of the sites examined data on children’s intellectual ability. This revealed that 31% of the 8-year-olds with ASD had an IQ less than or equal to 70, which qualified them as having an intellectual disability. An additional 25% were in the “borderline” range (with an IQ between 71 and 85), and 44% had average or above-average intelligence.
Overall, girls with ASD were more likely than boys to be categorized as intellectually disabled, while boys were more likely than girls to find themselves in the average or above-average range.
Among the 8-year-olds with ASD, 22% of white children, 35% of Latino children and 44% of black children had an IQ at or below 70.
True prevalence may be higher
Some records that researchers looked for could not be found. If they had been included in the analysis, the study authors estimate that the prevalence of ASD would have been nearly 20% higher in Arkansas and Tennessee, about 8% higher in Maryland and up to 5% higher in Colorado, Missouri, New Jersey and North Carolina.
Changing definition of ASD
Psychiatrists officially changed the definition of autism spectrum disorder when they rewrote the Diagnostic and Statistical Manual of Mental Disorders in 2013. Researchers applied the new criteria to a subset of the children in the study, along with the older criteria they had been using since 2000.
The new definition is likely to translate into fewer cases of ASD, the study authors wrote. For instance, estimates based on the new criteria were about 3% lower for boys and 6% lower for girls. They also were 3% lower for white and black children, 5% lower for Asian children and 8% lower for Latino children.
Susan Boyce, married and the mother of four, doesn’t know when she will die, but she does know how. One day, her disease-decimated lungs will no longer be able to pump oxygen through her bloodstream.
“What happens with us is that we can’t get enough oxygen,” said Boyce, 54, of Rumson, N.J., who must take oxygen through a machine most of the day to breathe. “We die by suffocation. I don’t want to die by suffocation. It’s a slow, awful death.”
Which is why Boyce, whose condition causes her immune system to destroy healthy lung tissue, wants New Jersey to join the handful of states that allow physicians to prescribe lethal medications to dying patients.
New Jersey is one of at least 25 states considering aid-in-dying bills this year, according to the Denver-based advocacy group Compassion and Choices, and advocates think momentum is on their side.
Nearly 18 percent of Americans live in places where aid-in-dying is legal, and support is increasing: A recent Gallup poll found two-thirds in favor, up from half four years earlier. Some medical groups have softened their opposition. And increasing life spans, while generally a positive development, mean that more Americans are watching their parents die drawn-out, agonizing deaths.
Oregon voters legalized aid-in-dying — sometimes referred to as “death with dignity” or assisted suicide — by approving a ballot measure in 1994. Washington state voters followed suit in 2008, and a court ruling made it legal in Montana in 2009. Since 2013, Colorado, California, Vermont and the District have legalized it, either through ballot initiative or legislation. (The District’s law withstood an attempt last year to nullify it, but no patients have used it. Some advocates say the rules make doing so difficult.)
David Grube, who practiced family medicine in Oregon before retiring in 2012, once opposed aid-in-dying. But he said that as more states have legalized it and no evidence has emerged that patients are being pressured into the process, more people are becoming comfortable with the idea.
“It’s like same-sex marriage,” said Grube, who is the medical director of Compassion and Choices. “Forty or 50 years ago, I didn’t even know what a homosexual was. Now I see people in loving relationships, and that’s great.”
Even some critics of the aid-in-dying idea acknowledge the momentum.
“Many of my colleagues have softened,” said Ira Byock, a palliative-care doctor in Torrance, Calif., who is chief medical officer for the Institute for Human Caring. The institute provides medical, spiritual and emotional support to seriously ill patients and their families as part of the Providence St. Joseph Health system.
The American Medical Association remains firmly against aid-in-dying. “Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks,” the group says. Yet, 10 of its state chapters have dropped their opposition.
Officially, organizations such as the National Hospice and Palliative Care Organization maintain their opposition to aid-in-dying measures. But many individual practitioners have become more comfortable with the idea.
Many supporters credit as a turning point the extensive media coverage of the 2014 death of 29-year-old Brittany Maynard, who had an aggressive form of brain cancer and who promoted aid-in-dying before taking lethal medications prescribed by her doctor in Oregon.
“I really did believe that good palliative care could address the needs of people who were dying,” said Ann Jackson, the CEO of the Oregon Hospice Association from 1988 to 2008. But Jackson came to change her mind.
“The main thing I’ve learned is that that is not true,” said Jackson, who now consults on end-of-life issues. “We may be able to address pain and symptoms, but we cannot address the futility some people feel at the end of life, the suffering they feel over their loss of autonomy. Hospice care cannot allow people to control their lives if they are going to deny them the right to die at a time of their own choosing.”
The Catholic Church remains firmly opposed to aid-in-dying, as do many organizations that represent people with disabilities.