By: Catherine Zenko, M.S., CCC-SLP
Coordinator of Education & Training- University of Florida Center for Autism and Related Disabilities (CARD), Adjunct Lecturer-UF Dept. of Speech-Language & Hearing Sciences
By just observing a group of young children, a fascinating spectacle of blossoming personalities and mannerisms emerge. One child might shy from the group; his neighbor might show aggressive tendencies; and another might demand attention, remaining the focus of the bunch. While all children exhibit diverse characteristics, certain behaviors and developments can trigger more than a mere personality quirk. In that same group, you also might observe a unique individual, one who practices repetitive motions and routines, moves constantly and rarely speaks—this child might very well be on the autism spectrum.
One out of every 88 children is diagnosed with autism, and there’s no known cause or cure. Autism affects more males than females, with a four-to-one ratio. Although the neurodevelopmental disorder is starting to get more coverage in the media, the information is not always accurate.
I asked one of our families to share a personal account of their journey with their daughter Avery. Shena and Jeff Hays, of Gainesville, provide a firsthand account of living with autism:
Q: How did you know to seek a diagnosis?
A: When I searched the Internet for Avery’s amazing gifts as an 18-month-old, one thing that came up was Hyperlexia. This is an unusual genius understanding of letters and numbers—it is also a splinter skill of autism. This led me to look out for signs of autism. She was just under age 2 when the autism regression started.
There are three main areas of impairment associated with autism: social interaction; communication; and restricted, repetitive and stereotyped patterns of behaviors, interests and activities. One of the hallmarks of autism is the lack of social-emotional reciprocity—in other words, the back-and-forth dance of social and emotional sharing that is typically present in developing children. This is often noted by poor eye contact, preference to be alone rather than to interact with other children or adults and delayed, or lack of, early gestures like pointing. As children with autism age, the impairments in social interaction impede their ability to read people’s emotions, acknowledge others’ perspectives and understand the unspoken social rules most people learn without trying.
“Restricted, repetitive and stereotyped patterns of behaviors, interests and activities” means that individuals with autism often repeat motor movements or patterns that can look odd or out of the ordinary, for example flapping hands or rocking back and forth. They typically have a small range of interests that are intense and can become distracting if it is the only topic or item they talk about or play with.
Q: What was that like as a parent going through the diagnostic process and aftermath?
A: The first thing I had to learn was if it was even the right choice to go after a diagnosis. I mean, no one wants their child to be labeled, right? I learned quickly that the label was the key to services, help and understanding. It was the best thing I could do for her.
The next thing I learned was that early intervention was very important, so that time in our lives turned into a time-sucking flurry of research, therapy and advocacy.
The difficult part was the strong, conflicting opinions about autism I came across in my research, like the raging vaccination debate and the gluten-free diet. I learned, after eight years, that there is a truth to both sides. I also learned that I knew what was best for my child— to learn from my mistakes, to advocate beyond what was comfortable for anyone, and most of all, to trust my gut. What a crash course in motherhood!
There are several resources available on the Internet providing more information about early signs of autism, in-depth description and video examples (see sidebar for a list).
Q: What was most helpful and challenging part of the entire process?
A: The most helpful part of the process was that my husband, Jeff, was on board and supportive of all of my research. The other helpful part was CARD (Center for Autism and Related Disabilities). When we moved to Gainesville, we contacted them and it was like we found a family there to guide us through this whole autism business. At CARD, there were real people at a real location who you could speak to and learn from. It was such a relief to have them there. CARD helped navigate the developmental skills. Jeff and I attended parent/child communication classes and potty training classes. One of the CARD consultants, Cathy Zenko, came and spoke to Avery’s first grade class about what autism was, and in 15 minutes, changed how her classmates perceived her and how they treated her for the rest of the year. Cathy came back and did it again the next year, too.
CARD is one of the unique resources in Florida. The state-wide autism program consists of seven regional centers. The centers are funded by the Florida Legislature through the Florida Department of Education to provide individual assistance to families, consultation to schools and other agencies, training on various topics to anyone in need, and public awareness relating to autism.
The University of Florida CARD serves 14 counties in the North Central Florida area. With the increasing number of individuals diagnosed with autism, the state funding for CARD has not kept up with the demand. Now each center must secure additional funds from the private sector to maintain the quality of resources that families need.
With other programs, families pay significant costs, seeking various interventions for their relatives with autism, but CARD provides a home base for constituents to go without paying fees. The UF CARD has two signature fundraising/community awareness events in the spring: Stomp the Swamp at Ben Hill Griffin stadium and Eastside High School Students Together for Autism Research (S.T.A.R.), an autism awareness 5K at Westside Park May 4 (see sidebar for more information).
Q: How is Avery is doing now?
A: Now, Avery is in fourth grade with her peers. Her classmates and teachers understand her, so when she has a hard time focusing or processing what is being asked of her she doesn’t get in trouble. She is a very intelligent, perceptive and kind little girl. She has friends in her class who care about her, and no one makes fun of her challenges. She is known in her class for her amazing fiction stories that she reads out to the class when they are asked to share. She also is known for her wonderful drawings and comic strips.
Her biggest challenge is taking her folder out of her backpack, hanging up her backpack, putting away her lunchbox and getting a chair and sitting at her desk in the morning. She can do multiplication and early Algebra problems just fine.
People with autism communicate through a wide range of expression. Some individuals with autism do not, or cannot, use words to communicate. They may use other forms of communication like sign language, pictures or speech-generating devices. Others use words to communicate. Some can talk for long periods of time, especially about their preferred topic of interest, without pausing to allow for the response of a typical conversation, but managing a routine greeting at school may render them speechless. Intelligence of individuals on the spectrum ranges from intellectually challenged to highly gifted.
Q: How did Avery’s diagnosis impact the family?
A: Avery and autism fit right in with our family just fine. She is the oldest of three, and her siblings are “typical”—whatever that means. The kids get along well; they play and they fight. I suppose the unusual part is how we don’t eat out often as we have found the Gluten-Free, Casein-Free (GFCF), and even soy free diet, helps Avery focus. We eat organic food with no preservatives, we try and stay away from anything processed and we don’t eat fast food.
Q: What are you goals/dreams for Avery?
A: She now has things that I have always wanted for her. She has friends, a great education, a great school, cute clothes, extra-curricular activities and a family who loves and supports her. In my opinion, she is a very fortunate little girl—autism or no autism. If I may ask for more, I would like for her to have better eye contact and to not slip away into her own world so often…
I hope Avery finds love and a husband and maybe even has children someday. I hope she goes on to college and someday finds a job she enjoys where she can contribute her intelligence (I’m thinking medical research or art.) Whatever she chooses, I am sure she will be amazing at it. She is beautiful, kind and brilliant. She has the world at her fingertips, she has her family and she has CARD.
Individuals with autism are just as unique as anyone else. They each have different strengths and weaknesses that need to be fostered and fortified. Because April is Autism Awareness Month, I hope this article helps people understand what autism is and how it affects individuals and their families. Knowledge and acceptance are the first steps in building a more tolerant, inclusive and productive community for those who live in North Central Florida.
For more information about autism, CARD and CARD’s upcoming events, please visit www.card.ufl.edu.
Helpful Autism Resources:
To view Catherine’s book, “Understanding the Nature of Autism: A Guide to the Autism Spectrum Disorders,” visit www.proedinc.com/customer/productView.aspx?ID=5131