Category: Blog

2025 Simpson-Ramsey Neurodevelopment Symposium

The following blog was written by Katie Sibley, 2024-25 LEND Nutrition Trainee

The Center for Excellence in Developmental Disabilities (CEDD) at UAB coordinated the annual Simpson-Ramsey Symposium in April, and I had the privilege of attending for the first time as a LEND nutrition trainee. The Simpson-Ramsey Symposium highlights current research in the neurodevelopmental disabilities field, bringing in excellent researchers and lecturers both locally and from across the country. Current and former LEND trainees also presented projects they have been working on, giving a spotlight to the fruit of the LEND training efforts. Each year this event attracts a wide audience of healthcare professionals as well as academics and students, who gather to learn more about the emerging research in neurodevelopmental disabilities. 

As a participant, I learned so much about research related to Tuberous Sclerosis Complex, improving healthcare access, and the meaning of autism biomarkers as well as different projects trainees are working on and the personal story of a former trainee who is both a healthcare provider and parent of neurodivergent individuals. The Symposium was very encouraging by bringing together many individuals who are passionate about the care of the neurodevelopmental disabilities community. It was also encouraging to see the progress in research and knowledge and how we know and understand more today than we did even 10 years ago. However, it was clear throughout the presentations that there is more work that needs to be done, and more research is needed to understand development and neuroscience related to disabilities. 

A highlight of the Symposium was when former trainee John Derrick shared an inspiring message about his experience raising two neurodivergent children whom he and his wife adopted. His story provided both real-life situations and challenges and built compassion and understanding in the audience. For caregivers in the audience, he created a space of understanding and a sense of feeling known by sharing honestly the challenges his family faced. In many ways, it provided a sense of reality in the midst of learning about recent research. His story provided faces and individual stories to match to the research presented. I believe everyone who participated in the Symposium will be forever impacted by John’s story.

There was opportunity for networking throughout the day as well. Many healthcare providers, caregivers, and students were able to connect and learn more about the different areas of expertise in the room. Just being present at the Symposium gave every participant a commonality that was shared: a passion for providing care for neurodevelopmental disabilities with dignity and compassion. I thoroughly enjoyed my experience at the Symposium and hope to attend again in the years to come!

A Trainee Perspective on the 2025 Alabama Autism Conference

This blog was contributed by Michelle Herrera, Social Work LEND trainee for 2024-25

In February, I had the opportunity to attend the 2025 Alabama Autism Conference as a LEND trainee. The Alabama Autism Conference is an annual event that highlights new research and insights into diagnosis and treatment of autism spectrum disorder (ASD), while also strengthening and fostering collaboration among professionals, educators, and families across Alabama. Specifically, the full-day event includes speakers, breakout sessions, exhibits, research posters, and a valuable trainee session.

The first speaker of the day was Dr. Angela Scarpa-Friedman who presented, Supporting Emotion Regulation in Young Autistic Children Using Cognitive Behavioral Strategies. Dr. Scarpa-Friedman discussed how emotion regulation can be a challenge for young autistic children and how cognitive behavioral strategies can help. The next session was presented by Dr. Megan Roberts, titled Supporting Communication in Toddlers with Autism: From Early Intervention to Effective Intervention. In her presentation, Dr. Roberts emphasized the significance of early intervention for autistic toddlers and explained the ways in which caregivers can become better engaged in these interventions. Following this was the presentation of Dr. Laci Watkins called, Supporting the Inclusion of Autistic Children in Schools and Communities. Dr. Watkins’ presentation focused on how inclusive educational environments are vital in the interaction and play between autistic and non-autistic peers. As a social work LEND trainee, hearing from these three speakers helped me reflect on the range of evidence-based practices being used to support autistic children and their families.

Afterwards, all the trainees gathered for the trainee session. During this session, trainees had the opportunity to talk as a group with Dr. Watkins, Dr. Scarpa-Friedman, Dr. Emily Kuschner, and Dr. Yev Veverka. Some of the most asked questions were about mentorship, career paths, and navigating professional opportunities after and during training. As the only social work trainee in the room, it was important to be part of a conversation that brought together individuals from such diverse disciplines. It was reassuring to hear that others shared similar questions and uncertainties, and the openness of the speakers made the session feel encouraging and supportive of our different paths ahead.

For the breakout session, I attended Expanding Treatment Options for Food Selectivity in Autistic Youth, presented by Dr. Emily Kuschner. I was particularly interested because, through my LEND traineeship, I’ve learned that food sensitivity is a common challenge for many families. Dr. Kuschner discussed feeding concerns for autistic youth and reviewed treatment options, including the BUFFET program, a 14-week therapy for children ages 8-12 aimed at increasing food variety. The program uses cognitive behavioral techniques to help manage food-related anxiety. It was insightful to see how a personalized approach to food challenges could offer a promising way to help children and families.

I also had the chance to visit the exhibit room during a break, where I spent some time volunteering at the Civitan-Sparks Clinics table. It was a chance to share information about the clinics’ ongoing research and services with others. After my time at the table, I took a look around at other exhibits focused on early intervention and resources for families, which were especially relevant to my work. The exhibit hall was a great space for connecting with others in the field and exploring different approaches to supporting families and children with autism.

Haley Moss, an author, attorney, and self-advocate, gave a powerful closing presentation titled Granting Access: Dismantling Ableism and Embracing Autistic Identity. She shared personal stories, like how her mom helped her understand her autism at a young age through Harry Potter. Haley emphasized the importance of creating access, building community, and encouraging a sense of identity and care for neurodivergent people. Her insights inspired me to reflect on my own biases and how I can help contribute to a more inclusive world.
Attending the 2025 Alabama Autism Conference was a great experience that deepened my understanding of neurodiversity. It was a day filled with valuable insights, personal stories, and practical takeaways that I will take with me moving forward. Be sure to mark your calendar for the 2026 conference!

More information about the Alabama Autism Conference can be found at Home Page – Alabama Autism Conference.

Take Me ‘Aut’ to the Ball Game!

Post written by Tatianna Zambrano, M. Ed., Current LEND School Psychology Trainee

The Center for Excellence in Developmental Disabilities (CEDD) at UAB was proud to participate in the Birmingham Barons’ Autism Friendly Day on May 4, 2025. This event represents a collaboration among dozens of community partners, including our Center and Civitan-Sparks Clinics. The event was an incredible opportunity to not only enjoy hot dogs and funnel cakes but also to promote inclusivity and celebrate neurodiversity alongside families, professionals, and advocates from across Alabama! Plus, families got to snag a photo with a local celebrity – Babe Ruff!

Hosted by the Birmingham Barons, the Autism Friendly Day created a welcoming, sensory-friendly environment for autistic individuals and their loved ones. To support comfort and accessibility, the ballpark reduced ambient noise levels, limited announcements, and offered quiet zones. The day emphasized awareness and inclusion, helping fans with autism enjoy America’s favorite pastime in a more supportive setting.

Civitan-Sparks professionals and LEND (Leadership Education in Neurodevelopmental and Related Disabilities) trainees from UAB joined the event to share valuable resources and connect directly with the community. Trainees distributed social stories which are tools created to help individuals with autism better understand and prepare for new experiences like attending a baseball game. These stories were developed by past LEND trainees as part of their mission to support meaningful community participation for individuals with developmental disabilities.

In addition to the social stories, the team handed out information about Civitan-Sparks Clinics, the Regional Autism Network (RAN), other UAB-affiliated programs dedicated to developmental and behavioral health, and the ever-desired free pens and bubbles. It was a rewarding day of engagement, as the CEDD team had the chance to reconnect with current and former patients, meet new families, and build stronger relationships with members of the Birmingham autism community.

Events like Autism Friendly Day are a testament to the power of inclusive spaces. They not only provide autistic individuals the opportunity to enjoy activities they might otherwise avoid, but they also help foster understanding, awareness, and community support. Birmingham friends and families got the chance to understand how simple accommodations can make home plate feel like home for all! We’re grateful to the Birmingham Barons for hosting such a meaningful event, and we look forward to continuing our work alongside our partners to build a more inclusive Alabama for all.

Permanent Presence: Autism and the Power of Belonging

The following blog was contributed by Gwendolyn Brown, Family Navigator for the UAB Regional Autism Network

Autism conversations on social media can be a whirlwind. Comments about Autism Awareness and Autism Acceptance spark both hope and frustration. Many people believe that April is the sole month for going the extra mile for autism, but for countless families, the effort for understanding and inclusion is an ongoing journey all year long.

There’s a bittersweet nature to the progress we see; heartwarming moments of connection and gratitude remind us of our collective achievements, yet they also underscore that discrimination still exists—even if in subtler forms. As a parent and self-advocate, I experience a wide range of emotions. Some conversations with families leave me uplifted by simple acts of gratitude—a chance for someone to exhale, cry, connect, or discover new resources during conversations. Other times, tears remind me of the pain faced by families who continue to struggle, igniting a deep desire to ease that burden and inspire hope.

Reflecting on my role as a family navigator for UAB Regional Autism Network (RAN), I am reminded of the rare, transformative moments where I witnessed change on both personal and communal levels. These experiences have connected my past with my present, reinforcing my commitment to helping other families, providers, and grandparents navigate the complexities of autism. While doing our best to serve many callers, the heartfelt moments happen when we feel a little lost and eager to have an answer not so easily found.

There is immense joy in pursuing work that stems from a personal connection—having an autistic son who has taught me more about life and myself than I ever imagined. His journey has been a testament to resilience, an invitation to embrace everything from despair to overwhelming joy, peace and a guide toward a profound understanding of what it means to truly accept and include. It is never a desire for pity, for moments to be seen as a token, or as something being owed to my son and many autistic people.

Today, as society awakens to autism like never before, I stand as a witness to the ongoing evolution of both public perception and personal growth for families. Autism acceptance and awareness should always be intertwined with inclusion and a sense of belonging. These concepts are not mutually exclusive; they are all parts of a spectrum that reflects the fullness of human experience.

I watch my adult autistic son yearn for independence and genuine connection, aware of the challenges that come with navigating a world that often feels increasingly foreign. Even in moments of uncertainty, I remember the many milestones we have achieved together—and those we will continue to reach—reminding everyone that a diagnosis is only a part of someone’s story. Every autistic individual has a unique purpose, a contribution that goes far beyond what is often acknowledged.

For me, April is a powerful reminder: it’s not just about autism acceptance and awareness but about embracing and including. If we truly want to shift world views on autism, we must work actively to create spaces where autistic voices are heard, recognized, and celebrated—be it in the workplace or within our communities. If a provider claims to focus on autism, pause and consider: Have they opened their doors to autistic voices—not just as clients, but as colleagues, volunteers, or leaders? True inclusion isn’t just about advocacy—it’s about action. If no autistic individuals are part of the team, what does that say about the depth of their commitment? Inclusion must begin with us, by us, and for us—only then can the world begin to witness the brilliance and potential that so many autistic individuals have to offer. Let’s honor the diverse talents and perspectives that enrich our world by extending the invitation to belong to everyone.

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/.

Introducing our Self-Advocacy Faculty Member

Phillip Crain, MPA has joined the CEDD as our first Self-Advocacy faculty member for the UCEDD and LEND at UAB. He is also the Project Manager for Achieving Health Equity for Alabamians with Disabilities (AHEAD), a collaboration between the UCEDD and the Alabama Council for Developmental Disabilities. Phillip recently shared the following information about himself with the CEDD faculty, staff, and trainees.

How did you end up at UAB CEDD? I worked with Auburn University’s Wheelchair Basketball program from 2017 to 2019. When the pandemic started and higher education hiring froze, I decided to go back to school for another degree and a career shift. As a result, I started the MPA program at Troy University with a strong focus on their public health offerings through their graduate certificate in public health administration. This allowed me to explore the inequities of the disabled community regarding society at large and write multiple papers on disability and access to healthcare. At the end of my degree, I did an internship with United Ability. My time at United Ability led me to the STEP program at UAB where I worked for a year. The positions at United Ability and the STEP program allowed me to bolster my knowledge of the healthcare system and issues that disabled people deal with. Those positions also allowed me the opportunity to advocate and educate on behalf of my disabled community and help healthcare professionals better understand the issues facing disabled people, which I love doing. As my time with STEP ended, I was connected with Dr. Schwartz and the AHEAD initiative and here we are.

Where did you grow up? I grew up here in Birmingham. I graduated from Spain Park High School in 2010 before attending Auburn University for two degrees (undergraduate and my first masters) and Troy University to earn my second masters.

What do you like to do in your spare time? My favorite ways to spend time away from work include watching sports, especially the Auburn Tigers and Atlanta Braves, reading, and spending time with friends and family. I also love to travel. My favorite sights are museums, presidential libraries, and historic locations.

Top Bucket List Item? Right now, the top item is to travel to Alaska. Through family vacations, I have been to 49 of the 50 states, and Alaska is the only one I have not been to. Several European countries are also on the list, but the general lack of accessibility is a hold-up.

What are you most looking forward to in your role as a self-advocate faculty at UAB?
Honestly, I see my positions with LEND, UCEDD, and AHEAD as parallels working toward a similar goal. Our goal with AHEAD is to improve access and accessibility in the healthcare space for disabled individuals. We are trying to create an attitudinal shift among providers so
that access and accessibility are at the forefront of their care model. Similarly, my aim for the self-advocate position is to bring awareness where necessary and provide the perspective of a disabled individual within a discussion either by providing my thoughts and experiences or amplifying those of other disabled people. Within the disability space, parents and providers often drown out the disabled voices. We all need a spot at the table as we all have different angles and lenses through which we come to our understanding. The reality is that our view is often too narrow to identify the undesirable aspects and consequences at the periphery of our perspective on a given topic, policy, or practice. We need everyone’s input to see the whole picture clearly.