Rochester

In The Politics of Autism, I write:

A child’s chances of getting an autism label vary by geography as well as social class. On a broad level, state definitions of autism are consistent with the federal definition. At the practical level, there are differences, especially when it comes to assessing social and emotional development, health, vision, hearing, and motor skills. In 2011, seven percent of students receiving IDEA services nationwide had an autism determination. But the figures varied by state. The states with the highest share of IDEA students with identified autism were Minnesota (12.8 percent), Oregon (10.6 percent), and Connecticut (10.1 percent). The lowest were Iowa (1.1 percent), Puerto Rico (2.1 percent), Montana (2.8 percent), Oklahoma and West Virginia (3.7 percent each).

Lauren Peace and Justin Murphy at the Rochester Democrat and Chronicle report that the city has become a magnet for out-of-state autism families.

The clinical work being done at the University of Rochester Medical Center gives Rochester families access to world-class care, but its main points of difference are the community partnerships in the area, between health providers and families, as well as a powerful support system developed by parents, for parents.

"Families of children with autism and self-advocates have really pushed the national agenda," said Susan Hyman, chief of developmental and behavioral pediatrics at UR Medicine's Golisano Children's Hospital. "The Rochester community has a tradition of collaboration with the university in a very effective fashion, so we have a novel and collaborative interaction that really enhances the seamless service delivery."

URMC is one of 13 sites across North America, and the only site in New York that's a member of the natiowide Autism Treatment Network (ATN).

Dennis Kuo, an associate professor and division chief in general pediatrics at the University at Buffalo, said that ATN sites are special because of the multidisciplinary and coordinated approach they take to care.

...

"Having an ATN site in Rochester ensures the latest updates in autism treatment are both offered and delivered effectively," he said. "The ATN’s approach is to break these silos down."

But there are serious problems.  Poor and minority families lack access to information and social networks, leading to delays in diagnosis and service delivery.

Beyond disparities in information, poor families in Rochester suffer from long-standing inequities in access to the minimum standard of care mandated by federal law and disparities in how special needs students are classified through school.

The Rochester City School District may be the worst in the United States in terms of educating its children with disabilities. It spent more than 20 years under a federal consent decree and faces the prospect of another.

The reason, in part, is that the district has a much greater concentration of those students than either suburban or charter schools. RCSD educates about 25 percent of Monroe County children, but 39 percent of those living with disabilities.

Even within those numbers, racial gaps are evident — white children in RCSD are classified with autism at about twice the rate of black children, who are much more likely to be counted under the catch-all category of “other health impairment.”

Shire House

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

What happens when young autistic people hit the cliff?  Reggie Aqui reports at KGO-TV:

Liz Kane had that question about her son, Paul. "Paul was special needs, he was challenging in many ways," Kane said. The upside to Paul's diagnosis as a child was that he had a host of experts to help him on his path. That is, until he grew up. "I didn't realize until he graduated that the next week all the appointments he was going to were no longer available," Kane said.

Without a clear path, Kane decided to create a solution. She started a home in San Jose for young adults, like her son, with high-functioning autism. It would be a place where they could live away from their families but still have support services to teach them how to transition to independent living. She called it Shire House.

"By the time he (Paul) was in high school, I considered myself an expert and that was why I was okay to manage other young adults through the same issues my son had experienced," Kane said.

Six years later, she's helped 30 young people with autism successfully transition out of Shire House and into the next phase of their adult lives.

Cautions About Prevalence Data

 In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

At Scientific American, Darold A. Treffert takes a skeptical look at a recent CDC report suggesting an autism prevalence of 1 in 59.

When the report came out, the headlines read along the lines of “Autism cases continue to rise: now 1 in 59 children have autism.” But let’s look at that CDC study more critically. It is based on an active surveillance system established in 2000 that estimates autism spectrum disorder (ASD) among children age 8 years living in 11 states.

Using that system, the prevalence of autism (ASD) rose from 1 in 150 children in 2000–2002, to 1 in 68 children during 2010–2012 and 1 in 59 children in 2014. That means the prevalence of autism more than doubled in the 12-year period between 2000 and 2012 and increased nearly 16 percent just in the two-year period between 2012 and 2014.

That is preposterous. From 1 per 150 children to 1 per 59 children with autism in slightly more than a decade? No wonder headlines speak of an “epidemic.” Are these believable figures, or might it be because we keep diluting the condition and expanding the definition, and in so doing we keep moving the goalposts? I believe that to be the case.

There are problems that cast doubt on that method and those numbers for actual prevalence of ASD. Figures include “educational autism,” which is a diagnosis made by teachers or educational specialists in the classroom and “medical autism,” based on review of available medical records. There are no actual in-person evaluations. Casting more doubt is the fact that the prevalence in one state, Arkansas, was 1.31 percent but more than double that in another, 2.93 percent in New Jersey. The prevalence in Wisconsin rose 31 percent between 2012 and 2014. Is that a believable actual increase in ASD in two years in Wisconsin?

A Lawsuit in South Carolina

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

Jamie Self reports at The State:

S.C. children in need of intensive autism treatment cannot find therapists, and the state's Medicaid agency is to blame, according to a federal lawsuit that alleges the state is driving therapists away by failing to pay them enough.

The lawsuit was filed by Ashley Manley, a Lexington mother whose 6-year-old son has been waiting for more than two years to get more than 40 hours a week of in-home, intensive therapy. A doctor prescribed the therapy for the child after he was diagnosed with Autism Spectrum Disorder.

South Carolina's reimbursement rates for autism therapists are so low that they cannot afford to treat patients covered by Medicaid, the joint federal-state insurance program for the poor and disabled, according to the lawsuit. The suit, filed last week, names the S.C. Department of Health and Human Services and its director, Josh Baker, as defendants.

As a result of those low rates, some S.C. therapists refuse to accept Medicaid patients for the autism treatment, leading to a scarcity of therapists and long waits for their services, the suit alleges.

Eating Fish During Pregnancy Does Not Cause Autism

In The Politics of Autism, I discuss various ideas about what causes the condition.  Although the list of correlates and risk factors is long, scientists have ruled some things out.

From Brinkwire:

A major study examining the fish-eating habits of pregnant women has found that they are not linked to autism or autistic traits in their children.

Scientists at the University of Bristol looked at the assumption that mercury exposure during pregnancy is a major cause of autism using evidence from nearly 4500 women who took part in the Children of the 90s study.

Using analysis of blood samples, reported fish consumption and information on autism and autistic traits from one of the largest longitudinal studies to date, researchers found no links between levels of mercury in the mothers and autism or autistic traits in their children. The only adverse effect of mercury found was poor social cognition if mothers ate no fish at all, especially for girls.

Lead author and founder of the Children of the 90s study Professor Jean Golding commented: “Our findings further endorse the safety of eating fish during pregnancy. Importantly we’ve found no evidence at all to support claims that mercury is involved in the development of autism or autistic traits.

“This adds to a body of work that endorses the eating of fish during pregnancy for a good nutritional start to life with at least two fish meals a week.”

In October 2017 the University of Bristol presented a policy briefing document to government departments explaining that current advice for pregnant women is complex and confusing and may encourage women to limit or avoid eating fish altogether.

Wellcome Trust Research Fellow at the University of Bristol Dr Caroline Taylor contributed to both the new research and policy document and added: “All species of fish contain traces of mercury, which can harm brain development, but we’ve found that the health benefits of fish, probably from nutrients such as vitamin D, omega-3 fatty acids, selenium and iodine, outweigh the risks from mercury.

“The advice on eating fish when pregnant is complicated and overwhelming. There is now a body of evidence to support a simpler and clearer approach that maximizes the health benefits of fish. “I believe the next step is for a comprehensive study into how the current guidelines have affected the consumption of fish in pregnant women overall.”

Director of the National Autistic Society’s Centre for Autism, Carol Povey said: “At The National Autistic Society, we welcome all research which furthers our understanding of autism. This is a robust study which confirms what previous research has found: it is a myth that high mercury levels in pregnant mothers cause autism.

“There are around 700,000 autistic people in the UK and, although the exact causes of autism are still not fully understood, research to date has shown it involves many complex and interacting factors, including genetics, the environment and the development of the brain.

“While it is important to understand the causes of autism, we believe more research should be focused on what helps autistic people and their families so that all autistic people can have a good quality of life and get the support and understanding they need.”

Trump, Autism, Vaccines, Gates

 In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In the 2016 campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

In 2017, Trump seemed to have forgotten his position, but the myth was apparently still on his mind.

 Josh Keefe at Newsweek:

In newly released footage from a Bill and Melinda Gates Foundation event, Microsoft co-founder Bill Gates said President Donald Trump told him he was considering a commission to look into the “bad effects” of vaccines. "Don't do that," Gates said he told the president, and Trump has never publicly proposed such a commission. Yet the incident recalls Trump's longtime skeptical comments about vaccines.

Gates said that in two separate meetings since he was elected, Trump asked the billionaire philanthropist if “vaccines weren’t a bad thing.”

“He was considering a commission to look into the bad effects of vaccines and somebody, I think his name was Robert Kennedy Jr., was advising him that vaccines were causing bad things,” Gates recalled. “And I said ‘No, that's a dead end, that would be a bad thing, don’t do that.”

Disabilities and the Defeat of the Farm Bill

In The Politics of Autism, I discuss health care issues and social services for people with intellectual and developmental disabilities.

The Autism Society and other disability groups strongly opposed the Farm Bill, mainly because of its provisions on SNAP, aka food stamps.  The bill went down 198-213. A statement from House Democratic Leader Nancy Pelosi mentioned the role of disabilities:

On a bipartisan basis, the House rejected a bad bill that failed farmers and working families.  Republicans wrote a cruel, destructive Farm Bill that abandoned farmers and producers amid plummeting farm prices and the self-inflicted damage of President Trump’s trade brinkmanship.  Their heartless bill would have slashed $23 billion in SNAP benefits for children, seniors, students, 1.5 million veterans, 23,000 servicemembers, individuals with disabilities and working families.