Discovering autism

A spotlight on Kennedy Hayes

Laura Young
ECB Publishing, Inc.

When families look back on the past two years of life in a pandemic, their recollections can include hardships that were endured, creative solutions to unexpected situations, as well as discoveries that led to life-changing decisions and new understandings about oneself.
For Kennedy Hayes' family, it was all of the above.
Kennedy is the eight-year-old daughter of Chandra Hayes and the granddaughter of Pauline and Curtis Hayes, who live in the St. Phillips Community in Jefferson County. Like most Florida school children in March of 2020, Kennedy suddenly found herself stuck at home after Spring Break ended, trying to figure out how to finish her kindergarten year away from her teacher and classmates at Holy Comforter Episcopal School in Tallahassee.
It was hard. It required creative problem-solving. There were discoveries.
Having a new role in Kennedy's schooling gave Chandra an unexpected opportunity to observe her daughter more closely in her academic endeavors.
She noticed, for example, that Kennedy, who could read well at the age of three, suddenly had forgotten some of her basic sight words. She needed total silence to finish her work and had difficulty concentrating. Chandra wondered if what she saw might be related to being home all the time, without the kind of social interaction that supports academic progress. Or maybe something else was going on.
Kennedy was also beginning to notice things about herself that seemed to make her different than others around her.
“I always wondered about why my body would make a tingling feeling that made me want to make a noise when my brain didn't,” she recalled in a recent interview. Sometimes she couldn't hear herself think. She and her mom both had become aware of Kennedy's sensitivity to light, sound, food textures and food colors.
Considering it all, Chandra decided to have Kennedy, then age six, tested by a local psychologist in Tallahassee. The testing placed Kennedy on the autism spectrum. Chandra followed up by reaching out to the Center for Autism and Related Disabilities (CARD) at Florida State University. CARD is “dedicated to providing individuals with Autism or related disabilities, their families and professionals who work with them with free consultation, resources, and educational support to build knowledge, infrastructure, sustainability and capacity within the community.”
Kennedy understands that the autism spectrum is wide, and she notes that she has high-functioning autism (HFA).
HFA is an unofficial term for when a person on the autism spectrum exhibits no intellectual disability but may have challenges with communication, emotion recognition and expression, and social interaction. The official diagnostic term is Autism Spectrum Disorder (ASD) level 1.
“She is a bright, intelligent child,” says Chandra, “but social communication can be a challenge. Kennedy often needs prompting with social cues.”
Receiving the autism diagnosis provided new ways for Kennedy and Chandra to understand themselves and become advocates for those with autism. They were thankful that Kennedy was able to be back on campus for her 2020-21 school year. It was clear that being at school was better for Kennedy than doing school at home during lockdown, but more than that, the school embraced how autism was exhibited in Kennedy and provided the recommended supports to meet her needs.
Over the past two years, the Hayes family has continued to make new discoveries about autism, not just for their own understanding but to make a difference in the world around them.
Kennedy describes herself as a “sweet girl in life,” and she worries a bit how people perceive her when they learn that she has autism.
“Other people may think of me differently, when I think of myself as the same person,” she says. “I want to inspire other people to change things that are wrong. I want them to know that there is autism in the world and that our differences make us matter.”
Chandra is learning as much as she can about autism to help her guide her daughter through the present challenges and into a promising future.
“As a parent,” she says, “you always wonder about developmental changes and what that is going to look like. I want Kennedy to grow socially and academically.”
Chandra has been doing a lot of reading about autism and also has attended conferences. She felt especially fortunate to attend once conference featuring Dr. Temple Grandin, who “put autism on the map.”
New information has helped Chandra develop more patience as a parent and embrace her daughter's diagnosis. Her self-education has led her to some of the research being done on autism in African American girls. She has learned that autism in African American girls often goes undetected, because these children are seen as shy or quiet or sweet, rather than possibly having a communication disability.
The Washington University School of Medicine reports further that, although it’s now possible to diagnose autism in children before age two, most kids are at least four when they receive a diagnosis. For African American children, the average age of diagnosis was five and a half, even when parents expressed concerns several years earlier. Delays in diagnosis can have significant implications, because it results in delays in treatment and the development of support plans.
Chandra is thankful that Kennedy has now regained grade level in reading, an activity that she has long loved to do. Kennedy also enjoys playing soccer and participated in the Jefferson County Recreation Department's soccer program this year.
“I like soccer because I don't have to use my hands with a heavy object,” she says. “It's also really useful for me to exercise.”
Earlier this month, Kennedy had the opportunity with 150 other kids to practice her soccer skills with FSU soccer players. The event, sponsored by CARD, connected kids on and off the spectrum with the stars of Seminole soccer. Kennedy's favorite part of the soccer clinic was the rule that if you scored a goal you could do a dance. And dance she did!
Now that soccer season is over, Kennedy will be diving into some good mystery books in her spare time and playing the Miraculous Super Hero game on her tablet. She also enjoys nature and is inquiring into the 4-H clubs in Jefferson County as a way to explore the outdoors with her peers. At school, Kennedy is looking forward to finishing her science project on mealworms. The shoebox she's decorated with an underwater theme as “Kennedy's Wormmaid Motel” is ready for the worms to check in!
It's clear that Kennedy is thriving. She's finding the acceptance, support and advocacy that make her life with autism a rich life indeed.
Seeing how much Kennedy has benefitted from the services at CARD, Chandra wants to give back. She has become a member of the FSU CARD Constituency Board, which advises CARD staff on policy, priorities and activities. This role allows her to have an influence beyond her own family, enabling FSU CARD to provide the best services available to all constituents within a seven-county area of North Florida.
The Hayes family knows first-hand the positive impact of autism awareness. Kennedy's understanding has reached the point that she now says her superpower is that she is able to see and feel things differently than other people. For the Hayes, the knowledge grows every day, not just during Autism Awareness Month. Nevertheless, April is a time when they make it a point to reach out to others, to share their experience and help make their community a more aware, more inclusive place.

Autism from our view

A spotlight on Cody and Caleb Reid

Heather Ainsley
ECB Publishing, Inc.

Cody and Caleb are identical twin boys who will be 13 in June. They live their lives on the spectrum, meaning they were diagnosed with autism spectrum disorder, also known as autism or ASD. People with ASD may behave, communicate, interact and learn in ways that are different from people without it. Because autism affects everyone differently, there is a wide range of symptoms, from severe to mild, and this range is often referred to as the spectrum, and can make it difficult to diagnose. For Pattie Reid, mother of Cody and Caleb, a diagnosis didn't come instantly.
“Now, looking back, there were so many signs when they were babies that I wasn't aware of.” says Reid, who mentioned signs like isolation, aversion to hugging, having to be rocked or moved quickly, and strong aversion to baths. “I was a mom of twin boys, and all I was ever told was, 'oh, there isn't anything wrong with them, they are just being boys.'” She was told that discipline would sort out misbehavior issues, but adds that once they got a little bit older, that's when she really began to suspect something bigger might be at play.
“It wasn't until they were two that things really started,” she says, “There was no interest in using the bathroom, it was, 'go outside and use it in the diaper.' There was no talking either, only hand gestures and babbling.” Aside from these smaller behaviors, Reid began to notice a much more dangerous behavior begin to emerge. “They both had this incredible strength they would use to escape, and they would go lay in the road or even run away.” In the hopes of trying to avoid these dangerous situations, the family moved to a more remote area.
While these behaviors are deeply alarming for any parent to endure, they are quite common in children with autism. It is estimated that one out of every 59 individuals falls somewhere on the spectrum of ASD, and according to the National Autism Association, about 49 percent of children with autism have a tendency to wander or bolt suddenly from a safe setting. Individuals with ASD often have little to no sense of danger, and wandering behaviors can happen under every type of supervision.
In spite of what she was being told by others, Ried couldn't shake her intuition that something was amiss. “Something wasn't right,” she said, “I took them to see a pediatrician, and she saw it as well; the rocking back and forth, the sensory sensitivity- it was unbelievable.” But relief at having her suspicions confirmed was short lived.
“I wasn't looking for something wrong with them, I just wanted to help them. We were referred to FSU Multidisciplinary Center, and they were amazing with the boys. They diagnosed my sons as having “high-functioning autism,” and I cried for days. I was scared! I knew nothing about autism! Then the research began.” says Reid.
As her knowledge of her boys' condition grew, Reid learned that perhaps the biggest challenge her family would face would not come from her sons' autism, but from the outside world. “You see, not every autistic person is the same,” tells Reid, “Everyone is different, and unfortunately in the world we live in today, it is very easy for people to automatically assume that since you don't see the disability, that means it isn't there, and they might assume that they are bad children, and aren't getting disciplined at home. I knew this also because my husband was an undiagnosed autistic child, and growing up, it caused so many people to not understand what he was going through.”
Individuals who have autism may behave in ways that people without autism may view as “bad behavior,” without taking into consideration the difference in brain function that causes these behaviors. Autistic behaviors include screeching or yelling when overwhelmed or frustrated, bolting from a room when upset, hitting others or themselves if agitated, avoidance of eye contact, rocking, flicking or pacing when expected to sit still, or being inattentive when receiving directions. The cause of many of these behaviors are often sensory challenges. People with autism are likely to either over react or under react to sound, light, smells and touch, and these “misbehaviors” are often reactions to outside sensory stimulus that has become overwhelming and unbearable.
Once Cody and Caleb received their diagnosis, Reid finally had an explanation as to why her sons exhibited the concerning behaviors she had noticed. After that, it was just a matter of getting the boys help with navigating the world through their autism. “We began a long road of occupational and speech therapy,” remembers Reid, “The boys didn't talk until they were almost five. We have had ABA therapy, and tried to mainstream in school, but school didn't work.” Reid reveals that both boys were heavily bullied while they attended public school, and she and her husband eventually decided that homeschooling was far more beneficial to the boys' education, development and wellbeing.
ABA therapy is Applied Behavior Analysis therapy, and is a therapy that teaches skills and behavior through reinforcement. It is commonly referred to as the “gold standard” for autism treatment, and is considered a safe and proven therapy for removing socially and physically harmful behaviors associated with ASD.
In addition to ABA therapy, Reid seeks community acceptance for her sons and others with autism. “If the world would just know more about autism, and try to ask questions,” muses Reid, “And just try to be more aware that when people laugh and stare, it makes my job harder to go out and live because [Cody and Caleb] shut down and want to run away. Just always remember that they see things so different in their eyes. They hear things differently too, but just taking the time to understand and be patient could change so much for a child with autism. I am always here if anyone needs anything, and will always be glad to answer or help someone understand autism from our view.”
Cody is the eldest of the twins by one minute, and is very close with his brother Caleb. They have an older sister named Madison who will be 17 years old this year. While it is well known that the autism spectrum affects individuals across the board differently, it would seem that this rings true for the boys, even considering their identical resemblance. The boys both exhibit different behaviors, triggers and preferences than the other. Where Cody has weather triggers, and becomes upset and frightened when it is about to rain, Caleb has social anxiety, which makes it difficult for him to leave the house. “The biggest thing for our boys is processing,” says Reid, “They don't process everything like everyone else does. Some words that are inappropriate for you or me may be hilarious to them. Things like holding onto each other and touch can bring them comfort. Our boys are good boys and are super sweet. I have worked really hard to reassure them that I love them and will fight for them as well as protect them.”
Reid says she encourages the boys to try new things often, increasing their involvement in visiting new places. They both love to go to the beach, and a favorite family activity is to regularly visit new water springs. They enjoy fishing, playing soccer and doing arts and crafts projects. The family also participates in animal rescue, and Reid says that this especially has come as a huge blessing for the boys' development, as they learn to care for and help things that cannot help themselves.
In addition to these activities, Reid strongly recommends support groups and says she finds great comfort in having people she can speak to about the joys and challenges of living with autism. She is happy to see that awareness and acceptance for people with autism is on the rise. “There are some amazing groups on Facebook and there are so many people coming out with movies and shows.”
“Autism is a beautiful gift, with special talents,” she says in earnest, “It's not easy by any means, but these boys have taught me patience and the importance of slowing down, and positive words of affirmation being a good thing. Sometimes they just want to know that it's alright to just do the small things, and that everything is going to be okay.”
Ried says that she and her husband are currently seeking additional therapy for their sons, as autism changes with age and development. The family is excited about the new ABA Therapy Center coming to Monticello soon, which they feel will bring more awareness and understanding for people in the community who live on the spectrum.