This talk contains a discussion of suicide and mental health and contains a statistic on sexual assault. We all filter ourselves depending on our social context, but Autistic individuals rarely have the privilege to turn that filter off. In this talk, Leah Reinardy, an Autistic advocate and educator, defines the concept of Autistic masking, why Autistic individuals learn to mask, the deadly consequences that come with that mask, and the struggles of learning to take that mask off. Leah is a junior at Hope College studying music and business. She is from Zeeland, Michigan. Leah wanted to become a speaker to encourage others with a phobia of public speaking to raise their voices. She is the president of Hope Advocates for Invisible Conditions, a pianist in the Jazz Arts Collective, and a percussionist in the Wind Ensemble. This talk was given at a TEDx event using the TED conference format but independently organized by a local community.
New Jersey’s rate of 8-year-olds diagnosed with autism spectrum disorder is the third-highest in the nation
New federal studies from Rutgers found that more children have been diagnosed with autism than ever since monitoring began over two decades ago.
According to the U.S. Centers for Disease Control and Prevention (CDC), about 4% of 8-year-old boys and 1 % of 8-year-old girls have autism in the U.S. These estimates are the highest since the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network was created in 2000.
Biennial studies from the ADDM Network, which analyzed data from 2020, were coauthored by Walter Zahorodny, director of the New Jersey Autism Study at the Rutgers New Jersey Medical School and Josephine Shenouda, a Rutgers epidemiologist.
The first study, the CDC’s 2020 autism prevalence report, found that California set new records, diagnosing 45 percent more boys with autism than any other state in the network. Nearly 7 percent of all 8-year-old boys in the San Diego region are estimated to have autism, according to the report.
In New Jersey, the combined rate of 8-year-old boys and girls with autism was 28.7 per 1,000 children (2.9 percent), the third-highest behind Minnesota (3 percent) and California (4.5 percent).
Maryland recorded the lowest rate (2.3 percent) across the 11 states in the network (which includes Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah and Wisconsin).
“For California in particular, the data are surprising and represent the highest autism prevalence estimates from a region by an epidemiologic study,” Zahorodny said.
State-funded centers also provide evaluations and service coordination for children with disabilities and their families. Other states may be undercounting because they don’t have as many diagnostic resources, he said.
“The true rate may not be substantially different between California and other ADDM states, including New Jersey,” Zahorodny said. “What’s different is that California implemented some wide-ranging screening and intervention programs, which may have resulted in a higher estimated prevalence than elsewhere in the network.”
California also outpaced all other states in the 2018 study, recording an overall prevalence of 38.9 per 1,000 children. The state was not included in the 2016 study.
Zahorodny said other states should consider expanding screening programs to echo what California has done. “Consistent universal screening of young children coordinated through multiple pediatric practices may be the way to make a difference in autism detection and intervention,” he said.
A companion 2020 report, which estimated early identification of autism in 4-year-old children, found similar patterns and trends. Total prevalence in this age group increased 26 percent compared with 2018 results – to 2.1 percent of children. But the rates varied widely and were 265 percent higher in California than in Utah, the state with the lowest prevalence.
More difficult to ascertain is why ASD prevalence continues to climb. While there are known risk factors for autism, including age of parents, multiple-gestation birth, prematurity, C-section delivery and care in the intensive care unit after delivery, these perinatal factors have remained relatively stable even as the rate of ASD has continued to surge.
A common misconception is that better awareness and more availability of services is largely responsible for the rise, but Zahorodny said this was “impossible” because the scope and breadth of increase has been extensive across all subtypes of ASD, from mild to severe and across all demographic groups.
“This is not just a phenomenon of becoming more sensitive to subtly impaired kids,” he said.
Among other highlights from the reports:
For the first time among 8-year-old children, the prevalence of ASD was lower among white children than among other racial and ethnic groups, reversing the direction of racial and ethnic differences in ASD prevalence observed in the past.
Black 8-year-old children with ASD were more likely than white children with ASD to have a co-occurring intellectual disability.
Over the past two decades, ASD prevalence estimates of 8-year-old children from the ADDM Network have increased sharply, from 0.6 percent in 2000 to 2.2 percent 2018.
Among 4-year-olds, ASD prevalence in 2020 ranged from 1.2 percent of children in Utah to 4.6 percent in California, with an overall prevalence of 2.1 percent.
“Once considered a rare disorder, these figures suggest that autism may be one of the most common disabilities,” Zahorodny said. “The trouble is we don’t understand what the primary drivers of the increase are.”
Disparities exist within this population, with Black children having lowest screening rate
Young children with autism are much less likely to receive vision screening than their peers, despite high risk for serious eye disorders, according to a study by Nemours Children’s Health published in Pediatrics.
“I noticed that many of our patients with autism have never had vision screening, even though it’s recommended for all young children,” said the study’s senior author Brittany Perry, DO, a pediatrician at the Nemours Swank Autism Center. “So, I wanted to study whether this might be a broader disparity – whether kids with autism receive vision screening less often than other kids.”
The study found that only 36.5% of children with autism had completed vision screenings at well visits, substantially less than the 59.5% rate for children without autism . Moreover, among children with autism, the screening rate for Black children (27.6%) was considerably lower than that for White children (39.7%) and for children classified as multiracial (39.8%).
Early childhood is crucial for vision development, and early detection and treatment of eye problems can prevent long-term vision loss. The research team examined data from 63,829 well visits of children ages 3 to 5 from 2016 to 2019, across a primary care network encompassing Delaware, Pennsylvania and Florida.
Researchers said that the Florida facilities had much higher rates of vision screening for kids with autism (45.7%) than those in the Delaware and Pennsylvania (28.1%). They noted that 80% of Florida medical practices used the vision-testing method of photoscreening, compared to only 13% in the Delaware and Pennsylvania.
Photoscreening, which uses a specialized camera or video system to capture detailed images of a child’s eyes, is particularly helpful for children with autism because they cannot always understand and verbally respond to instructions or questions in conventional visual acuity tests. The American Academy of Pediatrics (AAP) recommends annual instrument-based vision screening particularly for children with developmental delays. The researchers said that reimbursement is necessary for greater photoscreening use in primary care – a concern that AAP has also noted.
“Increased use of photoscreening may prove to be a great tool for reducing disparities and increasing vision screening in more vulnerable populations with autism,” Perry said.
“The key takeaway from this study for providers is to be aware that these disparities exist for all children with autism, so we can work to provide better care,” she added. “And for parents, it may help them to better advocate for their children with autism and to request a vision screening at a well visit, or a referral to an eye specialist, if their child is overdue.”
Leading autism researchers, clinicians, and advocates from around the world will gather to share latest findings and discoveries
The International Society for Autism Research (INSAR) will hold its 2023 Annual Meeting – the organization’s 22nd – from Wednesday, May 3 through Saturday, May 6, 2023, bringing together a global, multidisciplinary group of hundreds of autism researchers, clinicians, advocates, self-advocates, and students to exchange the latest scientific learnings and discoveries that are advancing the expanding understanding of autism and its complexities. This year’s meeting will be held in-person in Stockholm, Sweden at Stockholmsmässan, the largest exhibition facility in the Nordic region.
The INSAR Annual Meeting is the world’s largest gathering of scientists and specialists who continue to catalyze innovative research into all aspects of autism spectrum disorder, including its nature, causes, and treatments. The 22nd INSAR Annual Meeting will include in-person presentations of oral papers and posters, and panel sessions and demonstrations of new and emerging technologies. Select sessions will be recorded during the live event and repurposed as separate educational offerings starting in June 2023.
This year’s INSAR Lifetime Achievement Award will honor Dr. Jan Buitelaar, Radboud University. The INSAR Research Advocate Award will be presented to Harald Neerland, president of Autism-Europe. Other awards presented at this year’s meeting will include the 2023 INSAR Cultural Diversity Research Award, which will honor the SPARK Research Team, as well as the INSAR Early Career Investigator Awards, Dissertation Awards and Slifka/ Ritvo Innovation in Autism Research Award.
For the first time, recorded video interviews with selected scientists discussing their newsworthy research will be available to media beginning May 3. The researchers will also be available for one-on-one interviews prior to the INSAR 2023 Annual Meeting and during the conference. Please contact apockriss@rubenstein.com or skaplan@rubenstein.com to arrange.
To register to attend the INSAR Annual Meeting, visit the INSAR website. INSAR Membership is not required.
Media wishing to attend must register in advance here.
Research will be presented on topics including:
Understanding clinical heterogeneity
Precision health for neurodiverse communities
Inclusion in research on early identification and intervention
Models of care for underserved communities and low resource settings
Understanding the diverse experiences of aging autistic adults
Carey and her research team found that autistic adolescents living in a state with any kind of 1915(c) Medicaid waiver had a better chance of remaining enrolled in Medicaid as they entered adulthood CREDIT Meghan Carey, Drexel University
Many autistic people rely on important healthcare coverage from Medicaid for continued services and supports throughout their life. But when entering adulthood, autistic adolescents are facing increased risk of disenrollment from the Medicaid program if they live in a state without a Medicaid waiver. Recently published in JAMA Network Open, researchers from the A.J. Drexel Autism Institute at Drexel University examined whether state-level waivers were associated with reduced risk of Medicaid disenrollment among autistic transition-age youth.
Being insured is important because it is associated with fewer unmet healthcare needs and lower healthcare expenses for families. Medicaid waivers have targeted eligibility criteria based on age and/or diagnosis for specific populations that allow states to provide needed services, including to autistic people. Most states provide services to autistic youth through 1915(c) waivers which provide healthcare services in home- and community-based settings rather than more restrictive settings.
“We found that autistic adolescents living in a state with any kind of 1915(c) Medicaid waiver had a better chance of remaining enrolled in Medicaid as they entered adulthood,” said Meghan Carey, a doctoral student in the Epidemiology department in the Dornsife School of Public Health, and lead author.
Researchers found from age 14 through 21, there was little difference in the probability of disenrollment across states. But at age 22, the probability of disenrollment in states without waivers increased dramatically to more than 13% – whereas it remained stable (about 2%) for those in states with a waiver.
“We also found that compared to autistic young people who are continuously enrolled in Medicaid, a higher proportion of autistic young people who experience disenrollment were Medicaid-eligible due to poverty,” said Carey.
Carey added that findings supported the notion that requirements for remaining continuously enrolled in Medicaid when poverty-eligible may be challenging because small changes in income can result in disenrollment.
The study included 14,739 autistic individuals who experienced disenrollment from Medicaid and 119,216 continuously enrolled autistic individuals. The research team extracted data from Medicaid records from 2008–2016, from 47 states and Washington, DC. Arizona, Rhode Island and Vermont use a different waiver mechanism (Section 1115 waivers which are more broad in scope and reach more constituents compared to 1915(c) waivers) and were excluded.
“Interestingly, autism-specific waivers were not associated with greater decreases in disenrollment for autistic transition-age youth compared with waivers with other diagnosis or functional eligibility criteria,” said Carey. “This suggests that for purposes of mitigating disenrollment among autistic transition-age youth, autism-specific waivers may not be necessary.”
Carey and her research team noted that policymakers should consider bolstering continuity of waiver availability to keep autistic transition-age youth insured and connected to necessary healthcare services, which could improve health-related and other outcomes for autistic adults, or explore other eligibility mechanisms for Medicaid.
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