Special in Uniform

In The Politics of Autism, I note that we need more study of how autistic people fare in other countries.

Pesach Benson at the Jewish News Service:

At the heart of the Emergency Logistics Warehouses in the Israel Defense Forces Home Front Command base in Ramla, an extraordinary scene unfolds daily. Young soldiers, dealing with various disabilities and neurodiversity, are actively contributing to Israel’s war effort through their dedicated service in the Special in Uniform (SIU) program.

...

Soldiers such as Ilai, who is on the autism spectrum, exemplify the program’s ethos.

“Me and my friends, we’ve all got different special needs,” he explains without pausing from his meticulous work. “We know how critical things are at the front, and we responded to the nation’s call, no questions asked. We’re here to give to Israel, to contribute all we can to our country and fellow citizens.”

...

The SIU program is a collaborative initiative of the IDF and Jewish National Fund-USA, which focuses on integrating young people with physical and mental disabilities into the Israeli military and society.

Around 1,000 Special in Uniform soldiers, from communities across Israel, serve in 45 bases in all branches of the IDF.

More on RFK's Comms Director

  In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent. 

He just picked antivax activist Del Bigtree as his communications director.  Zeeshan Aleem at MSNBC:

Since 2016, Bigtree has run the Informed Consent Action Network, the second-best-funded anti-vaccine organization in the country. In a letter announcing his new job, he boasts about growing up as an unvaccinated child who only consulted chiropractors for medical needs. He co-produced the 2016 documentary “Vaxxed,” which made the widely debunked claim that childhood vaccines have caused an autism epidemic that was subsequently covered up by the government. Bigtree has offensively compared vaccine mandates to Nazism, wearing a yellow Star of David at anti-vaxxer rallies and promising to hold Nuremberg trial-esque proceedings for Covid policy architects.


In discussing his new gig with Kennedy, Bigtree describes his new boss not as a politician with compelling views on a wide variety of issues, but as a warrior for his extremist movement. His letter announcing his new campaign role, addressed to the “medical freedom community,” overflows with Covid misinformation and characterizes Kennedy’s candidacy as a “miracle” that has the power to “stop the globalist’s New World Order.” The world’s Covid response, Bigtree writes, was “the greatest psychological operation the world has ever experienced” on behalf of “the dark forces of medical tyranny.” Bigtree promises that Kennedy’s campaign means that “our days of coerced compliance are coming to an end.” He ends the letter by promising campaign donors who give $1,000 special access to himself and to policy brainstorming sessions, presenting Kennedy’s candidacy as a vehicle for activist goals.

In April 2021, the Health and Freedom Convention in Broken Arrow, Oklahoma ,included a whiteboard linking many antivaxxers and conspiracy theorists.  At the center was Trump.

Names on the board include Kennedy (lower right quadrant) and Bigtree (top, just left of center)

This is a full view of the board behind Michael Flynn and Mike Lindell. (2/2) pic.twitter.com/SYw5wqSE8e

— PatriotTakes 🇺🇸 (@patriottakes) July 6, 2021

The State of Direct Support

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

From ANCOR'S 4th annual State of America’s Direct Support Workforce Crisis survey:

This year’s survey garnered responses from 581 distinct organizations delivering services in 45 states and the District of Columbia. The following are among the key findings from the State of America’s Direct Support Workforce Crisis 2023: 

• 95% of respondents indicated they had experienced moderate or severe staffing shortages in the past year. 
• More than half (54%) of respondents indicated they deliver services in an area where few or no other providers deliver similar services. 
• More than three-fourths (77%) of respondents reported turning away new referrals in the past year due to ongoing staffing shortages. 
• 72% of respondents reported that they had experienced difficulties adhering to established quality standards due to ongoing staffing challenges. 
• Of those respondents that reported offering case management services, fully three-fourths indicated they had experienced difficulties connecting people with services due to a lack of available providers.

The report also notes: "Providers want to pay more, but lack the funding needed to do so, leaving the median direct support professional with an hourly wage around $14.50. In turn, providers at the national level are left to grapple with turnover rates hovering around 44% and vacancy rates in excess of 20%. "

At Time, Hari Srinivasan explains an underappreciated effect of high staff turnover:

The high turnover in the lower-paid and high-stress disability support profession results in fleeting connections, leading to a lack of continuity needed to form lasting relationships for people with autism. Even the most wonderful of support staff will last a few years at best, before they completely disappear from life.

I’ve seen this personally: As someone who has autism, I’ve experienced a revolving door of over a 100 support staff—and I plan on living for many more years. The reality is that any person with autism is a client, a case, a job to the people they tend to interact with most—and that’s not the same as family or friends. A higher staff turnover is especially ubiquitous for autistics who are considered “challenging cases,” as staff naturally look to move to a higher paying job or an “easier case,” as soon as they can. Consequently, as autistics age, their world can become increasingly lonely, leaving them even more vulnerable on multiple fronts.

Antivaxxer Del Bigtree is RFK's Comms Director

  In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent. 

He just picked an antivax activist as his communications director.

I am now the Director of Communications for the Kennedy Campaign. If you believe in Health Freedom I am an offering a one time opportunity, ENDING AT MIDNIGHT TONIGHT, to join my Health Think Tank. https://t.co/BRr5OZ7jXg

— Del Bigtree (@delbigtree) December 31, 2023

In 2019, the Anti-Defamation League objected to one of his tactics:

The Star of David trend gathered additional momentum in late March, when anti-vaccine activist Del Bigtree took the stage at a “Parents Call the Shots” event in Austin, Texas, to rail against vaccines.

Bigtree, the chief executive of ICAN (Informed Consent Action Network), quoted from Rev. Martin Niemoller’s Holocaust-era poem “First They Came,” then referred to the Hasidic community in Rockland County, NY, where many parents have refused to vaccinate their children, and which is currently experiencing a measles outbreak. “How will we know if you’re not vaccinated?” Bigtree shouted in a mocking tone, referring to measures the local government is taking to bar unvaccinated children from public spaces. “How will we know to arrest you? Maybe we’ll do it the same way we did the last time. So for you, for all the Hasidic Jews in New York, who never thought this moment would come, I stand with you! I stand for your religious convictions. We will let you believe in your God.” As the crowd cheered, Bigtree pinned a yellow “No Vax” Star of David to his lapel.

Poland’s Auschwitz Memorial and Museum quickly rebuked Bigtree’s theatrics: “Instrumentalizing the fate of Jews who were persecuted by hateful anti-Semitic ideology and murdered in extermination camps like #Auschwitz with poisonous gas in order to argue against vaccination that saves human lives is a symptom of intellectual and moral degeneration.” Other organizations, including ADL, weighed in with similar condemnations.

Florida Registries

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly.  Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”

In Orlando, James Tutten, WFTV.com

A new Florida law aimed at improving relations between law enforcement and people with special needs or mental illness will go into effect on Jan. 1.

The law is called the “Special Persons Registry” or the “Protect Our Loved Ones Act” and applies to people with developmental or psychological disabilities.

It authorizes local law enforcement agencies to develop a database of people who may have conditions like autism spectrum disorder, Alzheimer’s disease, dementia disorder, or Down syndrome.

“The officers will know what they’re going into,” Edith Gendron, the Chief of Operations at the Alzheimer’s and Dementia Resource Center said. “They won’t be left to guess why this person might seem to be hallucinating.”

A summary analysis by the Florida House:

CS/HB 1275 passed the House on April 20, 2023, and subsequently passed the Senate on May 1, 2023.

Some behaviors associated with certain developmental, neurological, or psychological impairments can increase a person’s chances of negative interactions with law enforcement. These include the inability to follow instructions, acting out, inappropriate verbal statements, or other actions that may be mistakenly perceived as an indication of hostility, criminal intent, or alcohol or drug intoxication.

Some local law enforcement agencies have developed programs to create safer interactions between law enforcement and individuals with certain impairments or disabilities. These include registries that allow individuals with certain developmental, neurological, or psychological impairments to voluntarily enroll by submitting identifying information and indicating the condition they have that may be relevant to their interactions with law enforcement officers.

CS/HB 1275 creates s. 402.88, F.S., to establish uniform requirements for the operation of Persons with Disabilities Registries by law enforcement agencies. Registries may include individuals who have a developmental, psychological, or other disability or condition that may be relevant to their interactions with law enforcement officers. The bill requires specified professionals to diagnose and certify a person’s condition prior  to eligibility for enrollment in a registry. The bill specifies enrollment and disenrollment processes for adults,  minors, and adults declared incapacitated.

The bill authorizes a local law enforcement agency to provide access to a registry, and relevant information from the registry, to law enforcement officers engaged in official duties.

The bill is linked to CS/HB 1277, which creates a public records exemption for all records and personal identifying information relating to the enrollment of individuals in a persons with disabilities registry held by a local law enforcement agency.

The bill has no fiscal impact on state or local government.

The bill was approved by the Governor on June 29, 2023, ch. 2023-312, L.O.F., and will become effective on January 1, 2024.

 

IACC Summary of Advances in Autism Research

  In The Politics of Autism, I discuss the Inter-Agency Autism Coordinating Committee and research priorities.

From the Interagency Autism Coordinating Committee 

The Interagency Autism Coordinating Committee (IACC) has released its 2022 Summary of Advances in Autism Research. This publication provides short, plain language summaries of the top 20 advances in autism biomedical and services research selected by members of the IACC. In addition, the IACC has released an accompanying easy-read version that summarizes the full publication in a briefer, more accessible format.

The 20 studies selected for 2022 highlight potential ways to improve early screening and diagnosis of autism, including through the use of telehealth, and insight into brain differences that may contribute to autism and impact social communication, language development, and sensory processing. The studies also improve our understanding of disparities between autistic adults from different racial and ethnic backgrounds. In addition, a study using data from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network found significant racial and ethnic disparities in the receipt of early intervention services. However on a positive note, a separate ADDM study found that the number of U.S. children identified early in life has increased greatly since 2002, providing greater opportunity for the receipt of early intervention services and supports. Lastly, several studies selected for the Summary of Advances investigate important lifespan issues such as disruptions in Medicaid services, vocational outcomes, and differences in the prevalence of co-occurring conditions between autistic individuals diagnosed as children versus those diagnosed as adults.

Articles in the Summary of Advances are grouped according to the topics represented by the seven Questions of the 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy. Citations for the articles selected for the Summary of Advances, as well as a complete listing of nominated articles, are included in the publication. The 2022 Summary of Advances meets the requirements of the Autism Collaboration, Accountability, Research, Education, and Support (Autism CARES) Act of 2019.

Among the research findings that the publication summarizes:

• Less than half of the children in New Jersey diagnosed with autism between 2006 and 2016 received early intervention services, and significant socioeconomic and racial/ethnic disparities were observed, underscoring the urgency to address disparities and increase access to early intervention. 
•  Pediatricians can identify early mental health concerns in school-age children with autism through screening during well-child appointments, and opp
•  International survey results indicate several barriers, particularly communicating with providers and sensory challenges in waiting rooms, that may affect autistic adults in scheduling and completing primary care visits, leading to worse health outcomes. 
• Factors measured in childhood such as IQ, adaptive functioning, and degree of autistic traits may predict levels of independence, employment and education, and, to a lesser extent, physical health in autistic adults. 
• Autistic people diagnosed as adults are more likely to have co-occurring psychiatric conditions than those diagnosed as children, highlighting the importance of mental health supports across the lifespan and the need for research on how timing of diagnosis affects well-being. 
• Work readiness skills (e.g., adaptability, success in daily routines) may improve employment outcomes for autistic adults. 
• Medicaid data suggest that co-occurring health conditions among autistic adults, which occur more often than in non-autistic peers, differ based on race and ethnicity. 
• Lack of lifelong Medicaid coverage for autistic adults in many states leads to higher rates of coverage loss and lower re-enrollment compared to non-autistic peers with intellectual disabilities. 
• The number of autistic children identified early increased substantially between 2002 and 2016 in the United States, though racial and ethnic disparities remained; analyses suggest median age should not be used to measure progress. 

Complexity of Services

Uncertainty and complexity are major themes of The Politics of Autism.

Political scientist Steven M. Teles has coined a term that comes in handy for any discussion of autism services: kludgeocracy. In computing, a “kludge” is a system consisting of ill- matched elements or parts made for other applications. Engineers patch it together and hook it up to an existing system in order to solve a new problem. Kludges are complicated, hard to understand, and subject to crashes. Teles says that this description fits much of American public policy: “From the mind-numbing complexity of the health care system … our Byzantine system of funding higher education, and our bewildering federal-state system of governing everything from the welfare state to environmental regulation, America has chosen more indirect and incoherent policy mechanisms than any comparable country."

The U.S. Department of Health and Human Services (HHS) has released the 2022 Report to Congress on Supportive Services for Individuals with Autism. This report was requested by the U.S. House of Representatives Committee on Appropriations in House Report 117-96.

From pp. 76-77 of the report:

The complexity of the supportive services landscape points to one important area of need: family navigation supports to help families identify and coordinatecare among the various providers, service types, and forms of coverage. Services are often fragmented among many different providers and in some cases, families may not be aware of the types of supports that are available to them. Families who are already facing significant functional impairments and disabilityassociated life stressors may have to shoulder additional burden of navigating complicated gatekeeping requirements before even identifying whether appropriate supports and services are actually available in their community. In some instances, providers may receive conflicting guidance on whether or not they are able to serve a person with autism, or if they should be referred to other services specific for those with DD. As a result, autistic individuals’ co-occurring conditions, such as mental health conditions, may go unaddressed. Family navigation services have been found to be effective in improving access and adherence to services over time,371 but tools designed specifically for families following a diagnosis of autism are currently limited.372 To be offered starting in October 2022, a new Medicaid health home benefit for children with medically complex conditions is a step towards meeting this need. This benefit will help state Medicaid programs provide person-centered care management, care coordination, and patient and family support. Fragmentation of the service system may be further improved by enhanced “wrap-around” or “continuum of care” services. Wrap-around services refer to the practice of providing all the various services that anindividual may need over time across different areas in their life (e.g., home, school, community). Wrap-around service delivery is a team-based, collaborative case management approach where a number of professionals work together to provide a holistic program of supports. This coordinated approach can help to improve outcomes for individuals and their families.373,374

Autistic Person Is MD Coordinator of Autism Strategy

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."  

Maya Lora at The Balitmore Sun:

When Maryland publishes its plan for addressing the needs of autistic people next year, it will largely be due to the efforts of one of the community’s own.

Victoria Rodríguez-Roldán is an autistic, Latina trans woman with over a decade of combined experience in the government and nonprofit sectors, according to her biography, who has written for academic journals on the intersection of autistic and LGBTQ+ identities.

In August, Democratic Gov. Wes Moore appointed Rodríguez-Roldán as the state coordinator for autism strategy for the Maryland Department of Disabilities, which recommended Rodríguez-Roldán for the position after a national search.

“We were really impressed with her work in government and nonprofits and really advocating policy changes for many underserved communities,” Secretary Carol Beatty said, adding that one of Rodríguez-Roldán’s most important qualifications is her lived experience. “Our department feels very strongly in how important representation is to the disability community.”

...

According to her LinkedIn, Rodríguez-Roldán previously chaired the board of directors for the Autistic Self Advocacy Network, a Washington, D.C., based organization run by autistic adults. Zoe Gross, the director of advocacy for the network, said when she saw Maryland was looking for a state coordinator for autism policy, she “was really hoping that it would go to an autistic person” because the conversation around autism has been long-dominated by family members of autistic people or non-autistic professionals working in the field of autism.

Vote the Spectrum

 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."

Bridget Dowd at Fronteras:

In 2020, voting participation among people with disabilities lagged nearly 6 points behind the rate for non-disabled people, according to research from Rutgers University.

That’s why an Arizona non-profit is launching a new initiative to get people with disabilities registered for 2024.

First Place Arizona offers supportive housing for adults with autism, Down Syndrome and other neurodiversities. Now it’s launching a program called Vote the Spectrum.

First Place founder Denise Resnik said the goal is to register 10,000 individuals with autism and/or intellectual/developmental disabilities (A/I/DD) and those who support them to vote.

“We want to recognize that people with autism and disabilities are valued, integrated members of our communities and we want to create more inclusive communities and we believe a big part of that is having a voice and a vote," she said.

First Place is also partnering with the Secretary of State’s office and the Maricopa County Recorder’s office to hold mock election days so people know what to expect at the voting booth.

Disability Policy and Family Ties

 In The Politics of Autism, I discuss the congressional role in the issue.

I have an article at The Forum: "Disability Policy in the Contemporary Congress." Abstract:

The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.

At NYT, Kayla Guo writes that family experience with disability can foster bipartisanship on disability issues. She focuses on Senators Maggie Hassan (D-NH) and Eric Schmitt (R-MO)

They have little in common in terms of politics or legislative priorities. But both have children with disabilities: Ms. Hassan’s son, Ben, 35, has severe cerebral palsy. Mr. Schmitt’s son, Stephen, 19, is nonverbal and has tuberous sclerosis, epilepsy and autism.

“You have that special bond that is sometimes hard to explain to other people,” Mr. Schmitt said of his relationship with Ms. Hassan. “We may not vote together on hardly anything, but there’s a deeper connection.”

At a moment of stark polarization across the nation, Mr. Schmitt and Ms. Hassan are among several lawmakers in Congress with disabled children who have bonded over that shared circumstance. The common ground these lawmakers have found is a reminder of the human elements of serving in Congress: the time spent away from family, the importance of relationships on Capitol Hill and the personal perspectives lawmakers bring with them to Washington that shape their political and policy agendas.

“It’s something that you hear people in public office say a lot, but we actually have a lot in common,” Ms. Hassan said in an interview. “We have similar family experiences. We’re struggling with a lot of the same things, and I hope Americans will remember that and stay focused on it.”

...

 In the House, Representatives Cathy McMorris Rodgers of Washington and Pete Stauber of Minnesota, both Republicans, have children with Down syndrome. Ms. McMorris Rodgers founded the Congressional Down Syndrome Caucus after her son, Cole, 16, was born.

In the House, Representatives Cathy McMorris Rodgers of Washington and Pete Stauber of Minnesota, both Republicans, have children with Down syndrome. Ms. McMorris Rodgers founded the Congressional Down Syndrome Caucus after her son, Cole, 16, was born.

“You almost feel like you’re family because there’s an understanding, a shared experience,” Ms. McMorris Rodgers said about other lawmakers with disabled children. “It definitely builds a relationship. And there’s an immediate desire to work together.”

Mr. Stauber, who had a Barbie doll with Down syndrome displayed in his Washington office, teared up during an interview as he recalled how his son Isaac, 21, would greet him every day when he got home from work as a police officer. Isaac, one of Mr. Stauber’s six children, has “severe and profound” Down syndrome. He graduated from high school in the spring, and, like his father, loves ’70s and ’80s rock music.

“There are colleagues on the other side of the aisle that politically I may not agree with,” Mr. Stauber said. “But there is no daylight between us in supporting our special needs community.”

He added: “We’ll give each other a hug when we need it. It’s a good common ground.”

 

Antivaxxers Gain Ground in State Legislatures

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Before his presidency, Trump pushed the idea, hard and repeatedly.

Unfortunately, other Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures. 

Lauren Weber at WP:

A wave of lawmakers who oppose vaccine requirements are winning elections for state legislatures amid a national drop in childhood vaccination rates and a resurfacing of preventable deadly diseases.

The victories come as part of a political backlash to pandemic restrictions and the proliferation of misinformation about the safety of vaccines introduced to fight the coronavirus.

In Louisiana, 29 candidates endorsed by Stand for Health Freedom, a national group that works to defeat mandatory vaccinations, won in the state’s off-year elections this fall.

...

Louisiana’s shift is a sign of the growing clout of the anti-vaccine movement in the nation’s statehouses as bills that once died in committee make it onto the legislative floor for a vote.

Since spring, Tennessee lawmakers dropped all vaccine requirements for home-schooled children. Iowa Republicans passed a bill eliminating the requirement that schools educate students about the HPV vaccine. And the Florida legislature passed a law preemptively barring school districts from requiring coronavirus vaccines, a move health advocates fear opens the door to further vaccine limitations.

...

In Michigan, the normalization of anti-vaccine views is also unfolding. Eleven lawmakers recently honored discredited anti-vaccine activist and former physician Andrew Wakefield, who is responsible for the retracted research falsely linking autism to vaccines. Nine of those legislators were elected after the pandemic began, including Angela Rigas, a hairdresser ticketed for protesting pandemic mandates at the state capitol.

...

At a November conference held by Children’s Health Defense, an anti-vaccine group founded by Robert F. Kennedy Jr., a Michigan legislative aide cheered Rigas and her colleagues for taking a stand.

The Story Behind a"Whopper of the Year"

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent. 

Katie Sanders, of PolitiFact, tells WMUR-TV (Manchester NH) how PolitiFact came to identify RFK Jr.'s conspiracy campaign as one of its "Whoppers of the Year."

 

Caregivers of Autistic Adults Face Red Tape

 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.

Samara M. Wolpe, Amanda R. Johnson, Sunny Kim have an article at The Journal of Autism and Developmental Disorders titled "Navigating the Transition to Adulthood: Insights from Caregivers of Autistic Individuals." They conducted ten semi-structured interviews with caregivers of autistic young adults focused on transition to adulthood.

The difficulty of locating appropriate services for their child was a frequently expressed sentiment among participants. Many participants expressed the sentiment that, even when they found a seemingly suitable service that they thought would benefit their child, there was so much bureaucratic red tape that they were unable to obtain the service in time to use it and spent much of their free time fighting with service coordinators or attempting to get through to service professionals. One parent best summarized the experiences of wading through the restrictions put in place to limit access to services:

“It's a constant battle with Regional Center to get anything that you know benefits your kid. It’s so hard because they control everything, so you have to be polite… it's this constant churning of emotion because you want more for your kid and then you also understand why it's hard to get it, so there's this constant feeling like you're always in battle.” (Natalie)

Additionally, parents expressed frustration with navigating the Regional Center’s vendoring system. One participant stated:

“It’s so exhausting for the families, and then there's so much red tape… For example, they publish their list of vendors, but it's alphabetized, and for consumers of all age ranges for example, birth to 60 … well that's not helpful! I don’t need to know the name of the vendor. I need to know which vendors offer Adult Services, and what services they offer.” (Natalie)

Even those parents and caregivers who are able to get in touch with Regional Center coordinators and add themselves to the waitlist reported difficulty actually obtaining services. One parent (Liza) explained, “He's still living at home and we're in the process of trying to get him into supportive living, you know, we have an agency that agreed to work with us, but everybody's having a really hard time finding staff now so they're long waiting lists.” Even when services have been identified and the organization has agreed to provide the service, families still recalled waiting inordinate amounts of time to have the promised service come to fruition.