As Autism Awareness Month comes to a close, Loyal Source’s Diversity, Equity, and Inclusion (DEI) Committee took the opportunity to interview Judee Samuels, an important figure of both Providing Autism Links & Support (PALS) and UCF CARD (Center for Autism and Related Disabilities. PALS is a 501(c)(3) nonprofit organization, which provides many additional support programs to the over 15,000 individuals registered with UCF CARD.
Loyal Source values promoting diversity and inclusion not only in the workplace, but also within our communities. We hope you will learn many things about autism spectrum disorders (ASD) with this interview!
So, without further ado —
What is your name and position in CARD?
My name is Judith “Judee” Samuels. I am the UCF CARD Autism Disorder Specialist Program Manager and PALS Liaison
What originally made you interested in working with CARD?
I am the parent of a young man with moderate to severe autism. He is currently 32 years old. When he was diagnosed there was little to no support for individuals with autism. I promised him I would make life better, not only for him, but for all. I originally started as a board member in 1993. Then after pursuing another degree, I started to work for UCF CARD in 2001.
How has this program helped people?
UCF CARD with the support of PALS has provided support to families in countless ways. Some include entering college, getting a job, interviewing for a job, helping them to understand social rules, feeling accepted, enhancing their executive function skills, making and keeping friends, anxiety reduction, future planning, guardianship, police training, educating the public what autism is, support during school with their Individualized Evaluation Plans (IEP), potty training, summer camp programs, behavior reduction, communication development, and so much more. Most important is providing events and programs for families to feel a part of society and to feel that their children are included.
We take for granted all the things we learn naturally. People with ASD (autism spectrum disorder) typically need to be taught these skills. When asked what we do, it is typically easier to ask what we do not do. Basically, we do not provide emergency intervention. UCF CARD and PALS steps in to support families in whatever need the individual may have to assist them to become successful included individuals in society.
Is neurodivergence the same as autism?
No, they are two separate things. Neurodivergence is not the same as autism. People with autism are neurodivergent, but not all people with neurodivergence have autism. Basically, if you are speaking about someone with autism, you could say, “he or she has autism, therefore he or she is neurodivergent in his or her thinking.” Neurodivergence was a term developed to describe people to recognize their rich differences, strengths, and abilities in comparison to others by focusing on their abilities and not deficits. It, too, in its own way is a way of trying to get others to think differently about autism.
Neurodivergence is a descriptor, while autism is listed in the DSM 5, (the standard classification of mental disorders used by mental health professionals in the United States to assess and diagnose disorders). Autism is a condition recognized by the unique pattern of behaviors that are neurologically-based.
What advice can you give people not familiar with autism?
In educating the public, we attempt to explain that all of us are different, however, we all have feelings, strengths, a body, ways to communicate and preferences (in training we provide examples) and we must learn to respect that in each other because no two people are the same. As a team in supporting one another, we can become strong utilizing everyone’s strengths and supporting differences.
How would you explain autism to someone who has never heard of neurodivergence before?
I would keep it simple and stipulate most individuals diagnosed with autism are neurodivergent, meaning they may think and act differently than others. Most have incredible strengths. Many may struggle with social and communication skills, have repetitive behaviors along with strong desires for routine. Some have sensory issues from staying focused to everyday sensitivities like sound and/or touch.
What steps can be taken to allow someone with autism to feel more comfortable?
This is a difficult question to answer. We are all different, therefore things that help us to find comfort are different. The best interventions for the best outcomes depend on the individual’s preferences. Steps are always taken to best support that individual. What works for one will not work for all. Example: if someone is starting to rumble (make noises, start pacing, repetitive movements) and covering their ears, it would be assumed they are auditorily overstimulated, and the answer would be to reduce sound.
What resources do you recommend outside of your program?
There are multiple resources depending on the needs of the individual. CARD is a statewide program housed at seven universities in Florida and one of the few programs provides that support from diagnosis to death. A great resource for young families is Baby Navigator. They should register all individuals with the Agency for Persons with Disabilities (APD). Other state agencies of support may be the Florida Center for Inclusive Communities (FCIC), The Arc (ARC), Family Care Council (FCC), Family Network on Disabilities (FND), Florida Diagnostic Learning & Resource Systems (FDLRS), and the Florida Developmental Disabilities Council (FDDC). There are numerous local agencies providing various support and services — again, depending on the age and need of the individual. UCF CARD provides a full resource guide to assist finding the proper program/service needed at the time.
What symptoms do you believe are largely ignored that could help someone identify that they themselves or a family member might have autism?
Families who have children that appear very bright at young ages with persevering interests in one area should be a red flag to check. If their child is constantly wanting things a particular way, or their child has difficulty with emotional regulation and having tantrums multiple times a day, it should be a red flag. If the child is not developing language by the age of 15 months, and if the child is toe walking and seeking high sensory input, they should seek intervention.
Closing Thoughts from Judee
Thank you for this opportunity. We respect how individuals wish to be identified. We typically utilize a person-first language (i.e., “persons with autism” is preferred over “autistic persons”). Neurodivergence is a movement in attempting to change how people think about others that have differences and are good, however, please let’s make sure it is understood that neurodivergence is not a professional standard recognized disorder, while autism is.
You can learn more about PALS at pals-ucfcard.org and UCF CARD at cfl.ucf-card.org.