Research highlights key challenges and opportunities in transitioning autistic individuals into adulthood

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The Autism Transitions Research Project has released new findings that underscore critical challenges and opportunities in transitioning autistic youth into adulthood.

The Autism Transitions Research Project, funded by the Health Resources and Services Administration and led by Drexel University’s A.J. Drexel Autism Institute, has released new findings that highlight critical challenges and opportunities in transitioning autistic youth into adulthood. With approximately 1.2 million autistic individuals expected to reach adulthood in the coming decade, these insights are crucial for shaping future research and services.

The study titled “Challenges and Opportunities in Transitioning Autistic Individuals into Adulthood” was led by Anne M. Roux, a research scientist and director at the Policy Impact Project in the Autism Institute’s Policy and Analytics Center, along with a multidisciplinary team.

The study identifies critical barriers that hinder successful transitions for autistic individuals, including delays in diagnosis and access to services, long waitlists, and an over-reliance on care partners to provide daily support and navigate complex service systems. Funded through the Autism Transitions Research Project grant under principal investigator Lindsay Shea DrPH, the study also emphasizes the importance of cultural considerations and responsiveness, as well as the inclusion of autistic individuals in the development of transition services.

Key findings include:

  • Significant delays in diagnosis and access to transition services exacerbate challenges for autistic youth and their families.
  • There is a critical need for peer navigation support and tailored services for marginalized groups, such as those with intersecting identities.
  • Disparities in service availability across geographic locations.
  • Difficulty accessing essential benefits programs, like Supplemental Security Income, and need to revise benefits programs that reinforce poverty.

Participants in nine focus groups—which included autistic young adults, care partners, and professionals—emphasized the need for research focusing on the efficacy of transition services, the impact of system performance on outcomes, and the need for transformation in service ecosystems.

“This research reflects the perspectives of those most impacted by transition challenges and offers a pathway to more inclusive and effective solutions,” said Roux. “We must prioritize autistic perspectives and account for cultural differences when designing transition services and supports.”

The study’s recommendations include developing population-level research to assess system performance, improving service delivery for marginalized groups, and transforming the complexity of service ecosystems to better support successful transitions for all autistic youth across differing life experiences.

Increased autism symptoms linked to Y chromosome

Research offers new explanation for greater ASD risk among males
Research offers a new explanation for a greater possibility of autism among males.

 Increased probability for autism appears to be linked to the Y chromosome, a Geisinger study found, offering a new explanation for the greater prevalence of autism in males. T

Autism is a neurodevelopmental condition characterized by impaired social interaction and communication and restricted and repetitive patterns of behaviour, interests and activities. AAutism is nearly four times more prevalent among males than females, but the reason for this disparity is not well understood.

One common hypothesis involves the difference in sex chromosomes between males and females—typical females have two X chromosomes, while typical males have one X and one Y chromosome.

“A leading theory in the field is that protective factors of the X chromosome lower autism in females,” said Matthew Oetjens, Ph.D., assistant professor at Geisinger’s Autism & Developmental Medicine Institute.

The Geisinger research team, led by Dr Oetjens and Alexander Berry, PhD, staff scientist, sought to determine the effects of the X and Y chromosomes on autism risk by examining ASD diagnoses in people with an abnormal number of X or Y chromosomes, a genetic condition known as sex chromosome aneuploidy.

The team analyzed genetic and autism diagnosis data on 177,416 patients enrolled in the Simons Foundation Powering Autism Research (SPARK) study and Geisinger’s MyCode Community Health Initiative. They found that individuals with an additional X chromosome had no change in ASD risk, but that those with an extra Y chromosome were twice as likely to have an ASD diagnosis. This suggests a risk factor associated with the Y chromosome instead of a protective factor associated with the X chromosome.

“While these may seem like two sides of the same coin, our results encourage us to look for autism risk factors on the Y chromosome instead of limiting our search to protective factors on the X chromosome,” Dr. Berry said. “However, further research is needed to identify the specific risk factor associated with the Y chromosome.”

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Neurons look different in autistic children

Neuronal measurements could provide new insight into diagnosis and therapeutic interventions for autism
Neuronal measurements could provide new insight into diagnosis and therapeutic interventions for autism

New evidence suggests that the cells responsible for communication in the brain may have different structures in children with autism. Researchers at the Del Monte Institute for Neuroscience at the University of Rochester have found that neuron density in certain areas of the brain varies in children with autism compared to the general population.

“We have spent many years describing the broad characteristics of brain regions, such as thickness, volume, and curvature,” said Zachary Christensen, MD/PhD candidate at the University of Rochester School of Medicine and Dentistry, and the first author of the paper published today in Autism Research. “However, newer techniques in the field of neuroimaging for characterizing cells using MRI reveal new levels of complexity throughout development.”

Imaging provides new insight into brain development

Researchers analyzed brain imaging data from over 11,000 children aged 9-11. They compared brain scans of 142 children with autism to those of the general population and found lower neuron density in certain regions of the cerebral cortex. These regions are associated with memory, learning, reasoning, and problem-solving. On the other hand, they also found increased neuron density in the amygdala, a region responsible for emotions. The researchers compared the brain scans of children with autism not only to those without any neurodevelopmental diagnosis but also to a large group of children diagnosed with common psychiatric disorders like ADHD and anxiety. The results indicated that these differences are specific to autism.

“People diagnosed with autism often have to cope with other conditions such as anxiety, depression, and ADHD. These findings indicate that we now have a new set of measurements that show promise in identifying individuals with autism,” Christensen explained. “If we can reliably and easily identify unique differences in neuron structure in those with autism, it opens up opportunities to understand how autism develops. These measures could also be used to identify individuals with autism who may benefit from more targeted therapeutic interventions.”

Technology leverages what we know about the inner workings of the brain and autism

The advancement of technology has greatly improved the ability of investigators to observe precise details in neuronal structure. In the past, researchers could only observe structural differences in neural populations after death. The imaging data for this research was obtained from the Adolescent Brain Cognitive Development (ABCD) study database, which is the largest long-term study of brain development and child health. The University of Rochester is one of 21 national sites collecting data for this study, which began in 2015 and has significantly enhanced our understanding of adolescent brain health and development.