Rising Numbers in California

In The Politics of Autism, I discuss the controversy surrounding diagnosis of autism and estimates of its  prevalence. 

Jill Escher at CalMatters:

In 1999, the state of California was in shock: baffling even the most seasoned of authorities, autism cases in the developmental services system had spiked from about 4,000 in 1987 to about 13,000 cases in 1998.

As it turns out, that was just a hint of what lay ahead: today, the Department of Developmental Services counts nearly 10 times that, more than 122,000 autism cases.

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Back to the data, here’s more background Californians need to know:

• The Department of Developmental Services identifies only 451 current autism cases from birth year 1984 (they will turn 36 this year), compared to 7,273 cases for birth year 2014, who will turn 6 this year. This is a 16-fold increase, with hundreds more born that year still expected to seek admittance. Worryingly, this upward trend shows no signs of abating.
• Autism represented 5% of overall DDS cases in 1993, but now occupies nearly 40%. Disability service providers have been struggling to serve the autism wave, with its qualitatively different, and often more challenging, characteristics.
• The California Department of Public Health has found a 10-fold increase in prevalence from .11% for 1987 births to 1.1% for 2013 births. Unpublished data indicate it is now closer to 1.4%. These numbers should dispel any notion that population growth or immigration is driving the autism increase.
• California Special Education autism cases have also skyrocketed, from 14,038 cases in 1990 to 120,089 in 2018, an 8.5-fold increase. This autism spike has been fueling the need for ever-larger special education budgets across the state.

Alarmed by the lack of public reporting on autism growth, last month Autism Society San Francisco Bay Area called for a California Autism Reporting Program from the California Department of Public Health.

It is the least the state could do. These details, including levels of impairment lurking beneath the numbers, and the projected needs and costs for housing and services, are absolutely necessary if we are to responsibly find solutions for this burgeoning, vulnerable population.

Antivax Lawmakers in Minnesota

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.

Ricardo Lopez at Southernminn.com:

The small but vocal group of parents propagating fringe views about the safety and effectiveness of childhood immunizations have found unlikely allies — Minnesota lawmakers.

Through personal and official Republican Senate media channels on Facebook, as well as appearances at an anti-vaccination rally last year at the Capitol, more than a dozen state legislators in the House and Senate have lent the support of their elected offices to groups that medical professionals say are sowing disinformation about vaccinations. Other Minnesota lawmakers made appearances at a February 2019 event featuring vocal anti-vaxxer Robert F. Kennedy Jr. at the Minneapolis Club.

The Minnesota lawmakers include state Sen. Jim Abeler, R-Anoka, chair of the Senate Human Services Reform Finance and Policy committee, who formed the Minnesota Autism Council, an advisory panel. His decision to appoint two vaccine skeptics touched off criticism, given the 2017 measles outbreak in Minnesota, which was attributed to the work of anti-vaxxers spreading disinformation among the Somali community.

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Kolina Koltai, a researcher at the School of Information at the University of Texas, has been studying the social media behavior of those active in the anti-vaccination movement for five years. In the past two, Koltai said she has detected a shift in partisan ID for those opposed to vaccinations, with Republicans increasingly more likely to sponsor legislation undermining immunizations.

“There’s a politicization of science that is happening,” Koltai said, likening it to the debate over climate-change, in which skeptics include many prominent Republicans who continue casting doubt on the scientific consensus.

Shortchanging Exceptional Families

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

Rose Thayer at Stars and Stripes:

After accusing the government officials in charge of the military’s Exceptional Family Member Program of “happy talk,” but no action, Rep. Jackie Speier, D-Calif., vowed Wednesday [2/5] to bring the six executives back to Capitol Hill every three months until they’ve met all the recommendations made for their programs by the Government Accountability Office nearly two years ago.

“We are going to be hawks on this,” said Speier, chairwoman of the subpanel on military personnel for the House Armed Services Committee.

Wednesday’s hearing was the first time in more than a decade that the committee had heard about the program, known as EFMP, which is a mandatory enrollment program for service members who have a family member with special needs requiring specialized medical care, treatment programs or educational services.

While EFMP is meant to ensure that those service members receive duty assignments to locations where those special needs can be met, testimony from two military spouses with children in the program and three representatives from military advocacy groups depicted the program is failing in several ways. About 135,000 military family members are enrolled in the program, as of April 2019.

Nikki Wentling at Stars and Stripes:

One of those family members was Shannon DeBlock, wife of Navy Cmdr. Jason DeBlock.

A few years ago, the DeBlocks were transferred from Annapolis, Md., to San Diego, where they fought with the school district for two years over the education of their son Wesley, 11, who has autism.

“They put up every single barrier they could think of to not educate him,” she said.

The legal battle ended in mediation, during which the DeBlocks agreed to move back to Annapolis, where they knew Wesley could receive an appropriate, special-needs education. While Shannon and their two sons live in Maryland, Jason DeBlock is stationed in Norfolk, Va., commanding the USS Truxton.

Though Wesley is now getting a good education, the move to San Diego had lasting effects. He went two years with little schooling, and his reading regressed from a second-grade level to that of a kindergartner.

“We chose to separate our family to avoid the conflict of a legal battle that appeared to be never-ending,” Shannon DeBlock said. “We rely on these school districts and educators to help our kids become independent as much as they can be, and to be contributing members of society. When schools do this, the impact is so huge. It could affect the rest of their lives.”

Trump's budget would slash funding for Stars and Stripes.

Trump 2021 Budget v. Autistic People

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities.

From the Autism Society:

The Autism Society of America is very disappointed that the President’s budget request for Fiscal Year 2021 released yesterday is overall unsupportive of our most vulnerable populations, including the almost 3 million individuals with autism and their families (read detailed summary here).

“Supporting those with autism is a human rights issue,” stated Christopher Banks, President and CEO of the Autism Society of America. “This budget requires tremendous sacrifices from those with the least able to make those sacrifice. The President’s budget dramatically reduces the funding for vital programs and services that assist those with autism. This budget will negatively impacting their quality of life and reduce opportunities to fully participate in our communities.”

As in the previous three budgets, this year’s request proposes steep reductions in social-safety-net programs, including cuts to Medicare, Medicaid, and Social Security. The Administration proposes $1 trillion in cuts to Medicaid and the Affordable Care Act over ten years. Over ten years, Social Security is cut by $30 billion and Supplemental Nutrition (SNAP) programs are reduced by $180 billion.

According to the Budget Summary for the Department of HHS, the Administration, once again, completely eliminates Autism CARES Act funding for much needed interdisciplinary training of health professionals and the development of evidence-based services and support. The Autism and Other DD line item funds the interdisciplinary professional health programs (including Leadership Education and Neurodevelopmental Disabilities (LEND) and Developmental Behavioral Pediatrician (DBP) programs) intended to increase the number of health professionals to screen, diagnose, and treat individuals with autism. It also funds development of evidence-based interventions.

These activities were increased as part of the original Autism CARES Act (just reauthorized in 2019) to help address the growing numbers diagnosed with autism. Congress rejected these cuts in the previous three years.

Without any justification, the budget also eliminates a small but vital Supported Employment State Grants for people with developmental disabilities.

While the Budget for the Department of Education provides a small increase for special education programs, this amount has not kept up with the number of children found to be eligible, pushing more of the responsibility onto the states. The Autism Society supports full funding for the Individuals with Disabilities Education Act (IDEA).

The President’s budget also cuts funding for the Centers for Disease Control and Prevention by nine percent overall, which includes a $50 million cut to the National Center on Birth Defects and Developmental Disabilities (NCBDDD), a third of its budget. This center provides important surveillance activities as well as research and public education into complex neurodevelopmental disabilities such as autism.

“We know there are many in Congress who understand the challenges people with autism and their families face,” Banks continued. “Individuals living with autism have proven time and time again, when given the opportunity, they can improve their quality of life, be loyal and dedicated members of the workforce, and active members in their communities. ”

“We need members of Congress to stand up and fight for their constituents. We are encouraging individuals and families to communicate with all of their elected officials about how this budget affects people with autism,” said Banks.

The Autism Society of America is the nation’s oldest and largest grassroots organization representing individuals and families impacted by autism. For more information, contact Kim Musheno at 301-657-0881, ext. 9020.

Read our further analysis here.

Housing for Adults

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Housing is a big one for autistic adults.

The Arc has a report titled: "THERE’S NO PLACE LIKE HOME: A National Study of How People with Intellectual and/or Developmental Disabilities and Their Families Choose Where to Live." The report involved a national online survey and focus groups in Illinois.  From the executive summary:

The deinstitutionalization of people with intellectual and/or developmental disabilities (I/DD) has reached an all-time high, with the majority of people with I/DD living in community-based settings. Community living is not only preferred by people with I/DD, it is also more cost effective and results in increased positive outcomes across almost all quality of life domains, improved health and safety outcomes, and increases in community participation, relationships, strengthened family contact, and self-determination.

Currently, around 75% of adults with I/DD live with a parent or other caregiver and are not connected to publicly available services and supports. In addition, nearly one million households have a caregiver over the age of 60. As a result, aging parents and family members frequently serve as unpaid primary caregivers for their family member with I/DD. Many of these families worry about what will happen when they are no longer able to provide their family member with I/DD support, including whether their family member will have to live somewhere they do not want to live. To address these concerns, it is important and necessary for people with I/DD and their families to plan for the future. However, more than half of families have indicated that they do not have a plan for the future.

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Findings revealed that although there were many reasons people with I/DD moved from their family homes, or moved across residential settings, most commonly people moved as a result of a need for more support, family members having difficulty caring for their loved one, a desire for more independence, or emergency placements resulting from health or safety issues. People with I/DD and family members of people with I/DD often completed rigorous research to determine which options they had available to them; however, information was difficult to find and there was a general lack of resources. In addition, most people with I/DD, especially those with higher support needs, had few options to choose from as a result of an underfunded and inadequate service system. In addition, most of the time family members made the decision about where their family member with I/DD would live on their behalf, sometimes while consulting them, but other times without.

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As a result of these wants and needs, the overwhelming majority of people with I/DD as well as family members wanted people with I/DD to live in their own homes or apartments. People with I/DD also dreamt of having opportunities to learn new skills, such as cooking or cleaning, having more independence, being able to see their friends whenever they wanted, having a physically accessible home, and being treated with respect.

Autistic people accounted for about 22 percent of the disabled people in the sample. From the report:

Athough it was a very small group – only a handful of people – there were some family members who also blamed the lack of institutional options for people with higher support needs on “people who believe they know what’s best,” “influencers who think everyone belongs in one type of setting,” and “autism self-advocates [that] have ruined it for the severely autistic."

Cultural Sensitivity and Appalachia

In The Politics of Autism, I discuss cultural differences in the ways families deal with autism and how service providers try to meet their needs.

At The Journal of Appalachian Health, and Angela Scarpa and colleagues have an article titled "Access to Autism Spectrum Disorder Services for Rural Appalachian Citizens.  Not surprisingly, they find problems of availability and affordability. Another problem, however, has gotten less attention: cultural sensitivity to rural people.

When considering increasing the workforce of mental health providers in rural Appalachian regions, policy makers and educators may need to consider the addition of multicultural training that is specific and sensitive to the history and needs of Appalachian residents. It has been suggested, for example, that providers need to spend more time building rapport with clients by engaging in chit-chat and pleasantries (i.e., “front porch talk”), and getting to know specific terms that are used in the region (e.g., “having nerves” to mean experiencing anxiety).Similarly, providers in our sample suggested the need to establish trust and to respect client autonomy by becoming part of the community, avoiding jargon, and treating clients without condescension. Diversity training that includes such information about cultural attitudes may help overcome some initial mistrust of professionals and facilitate better therapeutic relationships. Interestingly, the caregivers themselves did not report these cultural barriers, noting only childcare as the primary barrier to participating in treatment. It is not clear if the lack of caregiver report was due to the small sample size, or if there is a real discrepancy in how families versus providers view barriers to seeking treatment.

Autistic Candidate for New York State Assembly

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."  Previous posts have discussed autistic political candidates in Georgia, Texas, and Washington State

Andrew Hyman at WHEC-TV in Rochester, New York reports on a SUNY Brockport student running for the New York State Assembly.

Dylan Dailor, 20, says he's the first assembly candidate with autism among the two major parties. Dailor was first diagnosed with autism when he was just seven.

"I don't want anyone to vote for me because they feel bad, this isn't a come from behind story," Dailor says.

The Greece native, who was endorsed by the Monroe County Democratic Committee at its convention last week, is running for the 134th District seat. That seat is currently held by incumbent Peter Lawrence, a Republican.