Recently Published Study on Unintentional Injuries in ASD

We are pleased to announce the publication of our latest paper, “A Qualitative Analysis of Unintentional Injuries in Autism Spectrum Disorder.” The study was led by Dr. Casie Morgan, with contributions from trainees Alecia Mercier and Bri Stein, who are affiliated with the CEDD at UAB. The team received mentorship from Dr. David Schwebel, Dr. Kristi Guest, and Dr. Sarah O’Kelley.

Why Are Autistic Children More Prone to Injury?

Prior research has shown that children with autism are at least three times more likely to experience fatal unintentional injuries than their non-autistic peers. However, less is known about the specific reasons behind this elevated risk. This study aimed to uncover these details by examining the perspectives of 15 mothers raising autistic children, and systematically identify common themes presented throughout the interviews.

KEY FINDINGS

Autistic Children are likely to experience an unintentional injury

  • 80% of mothers reported that their child experienced an injury needing care in the past six months.
  • Throughout their child’s lifetime, 73% of their children had an injury requiring a doctor, dentist, or emergency room visit.

Autism Traits Contribute to Injury Risk

Mothers identified several autism-related characteristics that may increase injury vulnerability:

  • Communication Difficulties: Many autistic children struggle to understand safety rules or communicate when they are hurt. This can make it harder for parents to teach injury prevention or recognize when their child is in pain.
  • Lack of Danger Awareness: Some children do not recognize hazardous situations, such as traffic or sharp objects, making them more prone to accidents.
  • Restricted or Repetitive Behaviors and Interests: Many children are drawn to sensory-seeking behaviors—like spinning, climbing, or running—which can result in falls or collisions. Others have fixations on things like water, which increases the risk of drowning.

Co-Occurring Conditions and Behaviors Amplify Risk

Many autistic children are also diagnosed with conditions like ADHD, intellectual disabilities, or sensory processing issues, which increases concerns for behaviors that may increase the likelihood of injury. For example:

  • Elopement (Wandering): Some children tend to run away from caregivers, putting them at risk for traffic crashes or getting lost.
  • Motor Coordination Challenges: Many parents described their children as clumsy or uncoordinated, leading them to worry about potential fall-related injuries.
  • Hyperactivity and Impulsivity: High energy levels and difficulty with impulse control can lead to reckless behaviors, such as jumping off furniture or running without looking.

The Heavy Stress on Parents

Mothers expressed high levels of stress and anxiety related to preventing child injuries. They reported feeling constantly on high alert and struggling to balance their child’s need for independence with safety concerns. Some even described the need to modify their homes—such as installing tall fences—to keep their children safe.

What Can Be Done?

This study highlights the urgent need for tailored safety interventions for autistic children. Potential solutions include:

  • Visual safety cues: Using visual aids and social stories to teach safety rules in a way that autistic children can understand.
  • Specialized water safety and swim lessons: Considering many autistic children are drawn to water, formal water safety programs tailored for autistic children could help reduce drowning risk.
  • Technology-based solutions: GPS trackers and electronic monitoring tools can assist parents in preventing elopement incidents.
  • Motor and spatial training: Occupational or physical therapy can help children develop better body awareness and coordination, potentially reducing accidental falls.

Final Thoughts

This study underscores that injury risk in autistic children may relate to specific traits and co-occurring conditions. While most parents work very hard to keep their children safe, they need better resources and support systems to manage these challenges effectively. By developing evidence-based safety strategies, healthcare professionals, educators, and caregivers can work together to create a safer environment for autistic children and minimize the pressure parents feel to keep their children safe from injury.

To read the published article, see https://rdcu.be/d89cW

 

 

 

UAB Medicine’s New Lifespan Down Syndrome Program: Comprehensive Lifelong Care

The Lifespan Down Syndrome Program at UAB Medicine is a groundbreaking initiative designed to deliver comprehensive, personalized care for individuals with Down syndrome at every stage of life. The program aims to improve the quality of life for both children and adults with Down syndrome by offering lifelong, research-backed medical care and support.

The Lifespan Down Syndrome Program provides holistic care that addresses a wide range of medical, developmental, and social needs. By integrating multiple specialists and resources, the program manages both immediate health concerns and long-term care goals. This comprehensive approach helps individuals with Down syndrome achieve their best possible health and well-being. Whether navigating early childhood development or managing health care needs in adulthood, UAB’s Lifespan Down Syndrome Program offers guidance and support at every stage, ensuring no patient or family feels alone on their journey. The program operates as a collaborative care model, working alongside the patient’s community doctor rather than replacing them. This partnership ensures that individuals with Down syndrome receive optimal care, following established guidelines and best practices for their health and development.

Faculty, staff, and trainees from the Center for Excellence in Developmental Disabilities are involved as clinicians and as steering committee members for this new program.

A Family’s Perspective
“Navigating [our daughter]’s transition into this critical stage of her life was overwhelming at times, but meeting with the interdisciplinary team at the new lifespan program for individuals with Down syndrome brought such relief,” shares the family of one of the clinic’s first patients. “From the therapists and social workers to physicians, each team member provided invaluable resources and referrals to specialists that put our minds at ease. What really stood out was how they kept [our daughter] at the center of every decision, ensuring her voice and needs guided the entire process.”

A Lifelong Commitment to Care
The Lifespan Down Syndrome Program supports individuals from infancy through adulthood.

    • For younger patients: Services are provided at the UAB Civitan-Sparks Clinics, where an expert team collaborates to meet the diverse needs of children with Down syndrome. Beginning at age 14, patient visits will focus on transition readiness, emphasizing the development of autonomy and independence to prepare for adulthood.
    • For adult patients: Starting at age 18, individuals will be seen at the Staging Transition for Every Patient (STEP) Clinic, part of UAB Medicine’s broader efforts to support patients with complex care needs as they enter the adult healthcare system.

Promoting Inclusivity and Community Support
Beyond medical care, the Lifespan Down Syndrome Program creates a supportive, inclusive environment for individuals with Down syndrome, their families, and caregivers. UAB Medicine connects families with essential community resources, advocacy organizations, and support groups to foster a more inclusive society. This approach not only addresses healthcare needs but also emphasizes social well-being, community engagement, and long-term independence.

“Down Syndrome Alabama is thrilled to have the new lifespan clinic in our state to better serve the Down syndrome community,” says Missy Haughery, Executive Director of DSA. “There is still much medical mystery surrounding the extra 21st chromosome, and having a specialty clinic within our state is an incredible advancement for families seeking expert care.”

A Brighter Future for Individuals with Down Syndrome
At UAB Medicine, we believe everyone deserves the highest quality of care. Our Lifespan Down Syndrome Program is committed to helping individuals with Down syndrome live fulfilling, healthy lives at every age. Join us in celebrating this important step forward in care for individuals with Down syndrome as we work together to create a brighter, more inclusive future.

How to Request an Appointment
If you or someone you know could benefit from the Lifespan Down Syndrome Program, please use the following links:

Patients 0-18      Patients 18+

For additional questions or support, please reach out via email to DSsupport@uabmc.edu or call 205-975-6800.

 

PIPA and UCEDD Attend the Governor’s Disability Policy Summit

The inaugural Governor’s Disability Policy Summit was held on June 18 at the Lakeshore Foundation in Birmingham. Aimed at addressing and advancing key issues impacting the disability community, the event was filled with insightful discussions, networking opportunities, and strategic advocacy. By bringing together decision makers, advocates, and individuals with disabilities, the goal to drive positive change and shape a more inclusive future in Alabama seems near.

This consumer-driven day of advocacy, discussion, and information aimed to empower participants and drive positive change in disability policies including six critical areas, each essential to improving the lives of disabled Alabamians:

  1. Employment
  2. Health Care
  3. Transportation
  4. Education
  5. Housing
  6. Civic Engagement

Christopher Alvarez, M.S., a bilingual disability activist and freelance journalist for The New York Times and Contributing Writer for NBC Latino, delivered the keynote address. Alvarez shared his insights on navigating education, employment, and housing systems while advocating for essential services. His address provided a valuable first-hand perspective and inspired attendees to take action in our own state.

Partners in Policymaking Alabama participants and alumni attended the event to contribute to the conversation. June Wilson, 2024 PIPA cohort, took the opportunity to spread awareness for her leadership project, “Changing Spaces Alabama.” The Changing Spaces Campaign is a network of advocates bringing awareness to the need for Adjustable-Height Universal Changing Tables in public family restrooms. As part of her Partners in Policymaking Alabama project, Wilson has started a chapter within our state.

When asked why she attended the summit, June quoted legendary disability rights activist Judy Heumann, “Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can.”

The Disability Policy Seminar was sponsored by the Lakeshore Foundation, the Governor’s Office on Disability, and Disability Rights and Resources. UCEDD and PIPA are looking forward to collaborating with this event for next year!

2024 Simpson-Ramsey Neurodevelopment Symposium

More than 60 people attended the Center’s annual Simpson Ramsey Symposium on April 25, 2024 at the Bradley Lecture Center. Distinguished presenters included Dr. John Foxe, Dr. Julie Preskitt, Dr. Leandra Godoy, Ms. Yetta Myrick, Dr. Madeline Eckenrode, and Ms. Betsy Hopson. LEND psychology trainee Zachary Arnold also presented updated data on his current research project.

Attendees were engaged in lectures and discussion on neuromarkers in rare monogenic neurodevelopmental disabilities, rural healthcare disparities in preschoolers referred for autism testing, multi-system approaches to improving autism care, and transition care for children and teenagers at the UAB STEP Program. The day also included presenting the Fred J. Biasini Outstanding Former Trainee award to Dr. Julie Preskitt who gave an inspiring talk on how teamwork and a multidisciplinary focus is truly one of the building blocks to success.

CEDD Co-sponsors and Attends the 23rd Annual Alabama Autism Conference

The CEDD and the UAB Civitan-Sparks Clinics (Department of Pediatrics, Division of Developmental-Behavioral Pediatrics) were co-sponsors for the 23rd Annual Alabama Autism Conference on 2/22 and 2/23/2024 in Tuscaloosa, Alabama. The conference had about 350 in-person and over 200 virtual attendees, including many trainees and faculty/staff from our CEDD programs. Highlights included:

    • Presentations by leading experts, including Susan White, Ph.D.; Brittany Travers, Ph.D.; Jessica Kramer, Ph.D., OTR/L; Lauren Little, Ph.D., OTR/L, FAOTA; Mallory Manning, M.S., CCC-SLP; Pamela Ramsey, M.C.D., CCC-SLP; and Dr. Kerry Magro
    • Four posters presented by trainees from the Autism Database Group at Civitan-Sparks Clinics
    • A trainee breakout session attended by 30 trainees to meet with state department representatives and discuss opportunities for professionals working in the area of autism and related disabilities in Alabama
    • A pre-conference dinner discussion facilitated by LEND/UCEDD faculty Dr. Sarah Ryan, Looking to the Future with Adults with Autism in Alabama
    • Two well-attended pre-conference workshops led by LEND/UCEDD faculty Dr. Justin Schwartz (Empowering Autism Identification and Diagnosis in Primary Care) and Dr. Sarah Ryan (Adapting Evidence-Based Psychotherapy for Autistic Individuals)

The Alabama Autism Conference is held annually on the last Friday in February. More information can be found at https://training.ua.edu/autism/.