GUIDANCE & SUPPORT
Helping families navigate the complex challenges of an autism spectrum disorder diagnosis
Medical professionals at Golisano Children’s Hospital use specially tailored therapies and multisensory rooms to help young patients and their families navigate the complex challenges of autism spectrum disorder.
When a child is diagnosed with an autism spectrum disorder (ASD), it can feel overwhelming to most parents. With this new diagnosis comes treatment plans and often therapies, and there’s just lots of information for parents to take in. That’s where Jillian Dagraca might enter the picture. As an autism navigator affiliated with Golisano Children’s Hospital of Southwest Florida, she helps parents and their children make sense of everything that’s happening.
To those unfamiliar with autism spectrum disorder, it is a developmental disorder that impacts communication, socialization and behavior; it can cause difficulty with social interactions, communication challenges and repetitive behaviors. The word “spectrum” is used because the type and severity of symptoms can vary widely from person to person.
“For families where a new ASD diagnosis was given to their child, many emotions, questions and concerns come into play,” says Dagraca. “Having someone to talk to, provide access to appropriate resources and help navigate their journey provides a sense of comfort.”
Once a child is diagnosed with ASD by a physician in Lee Health’s pediatric neurology department in Fort Myers, they and their family get referred to Dagraca. (There are also autism navigators who work with Lee Health and Golisano in Collier County.) During their first appointment, Dagraca completes a checklist with them. “Each question opens the door for additional communication, and from there specific resources are provided,” she says.
That includes information on autism-related services offered in the community, like the Angelfish adaptive swim program at the Lee Health Healthy Life Centers in Cape Coral and Babcock Ranch. “Many children with ASD prefer being near, in or around the water, which makes water safety extremely important,” she says.
Dagraca can provide parents with an ASD timeline that helps them know what to expect as the years go on. She also often directs parents to the Autism Speaks 100 Day Kit, which helps guide families of children ages 4 and under during the first 100 days after diagnosis, and Golisano’s Partners in Parenting workshops for parents of children with special needs. “Those focus on effective communication strategies, setting routines and, most importantly, fun ways to engage as a family,” she says.
“What we don’t want is for parents to feel alienated,” says Kim Biolchini, practice director for the pediatric neurology/developmental and behavioral
health department of Lee Physician Group. “Having a child with ASD is not a bad thing, and it’s something we can help support. Families can be frustrated, scared and nervous. And we want to help. We’re passionate about our kids.”
Children with ASD often need physical, occupational and/or speech therapy, and Dagraca can help them figure out their local options. “Getting connected with the recommended services is crucial,” she says. “Research supports early intervention, as the severity of an individual’s ASD symptoms are shown to decrease when the appropriate interventions are in place.”
Lee Health works with a lot of local children with ASD and their families through its pediatric outpatient rehabilitation centers located throughout the area. Physicians refer young patients to the centers for physical, occupational, speech and audiology therapy services, as well as for behavioral analysis and Autism Diagnostic Observation Schedule (ADOS) assessment for diagnostic purposes.
“We’re able to assist any family on what to do next after they have a diagnosis of ASD,” says Lisa Edwards, manager of pediatric rehabilitation services at the Golisano Children’s Health Center in Naples and the Naples Children’s Rehabilitation Center. “We provide resources to guide families so that as their child is developing, they’re impacting behavioral styles and developing strengths and systems very early on, so that their opportunities for success as their child grows and develops are much greater.”
Every child is different and every ASD diagnosis is unique, and Lee Health can tailor services to meet the specific needs of each child and their family. “We can provide individual care for that particular child and family, not just something that’s cookie-cutter,” says Karen A. Collins, director of pediatric rehabilitation services for Lee Health. “I think that the major focus is to make sure we help families get an early identification, so we can help those children and their families learn how to accommodate some of their sensory, motor or behavioral challenges and be successful.”
The rehab unit also works to educate parents to help them best advocate for their child both within the health system and outside of it. “Our goal is to transfer helpful knowledge to the families so they can go live their lives outside of the outpatient clinics and learn the accommodations or strategies to integrate into their lives to make them better,” says Caroline Bevington, manager of pediatric rehabilitation services for Lee Health’s two Children’s Rehabilitation Centers in Fort Myers. “We want to empower the parents to be the ‘team leader,’ and then we can offer support.”
Taking the lead helps parents know what’s best for their family. “I feel that it is important for families to explore all options for their child, as this will allow opportunities for each family to find what works and what does not,” says Dagraca. “Finding the right combination of therapies and resources has a positive impact on not only the individual with ASD but their family as well. Like any parent, when your child is thriving, making gains, and actively participating in the community, you feel great. By becoming familiar with the different services offered, parents will be able to best advocate for their child’s care.”
And there are more services out there today that parents can tap into than there were in years past. Options like social media groups can help parents navigate the complex ASD landscape.
“Be patient and know that it’s a journey,” Collins advises parents of newly diagnosed children. “And know that there are people out there and services to assist you. Just be kind to yourself. It’s a journey and a process, and you need to take the time with it and be engaged.”
Room to Adjust
When a child with ASD comes to Golisano Children’s Hospital for an appointment, procedure or other treatment, they might make use of a new feature at the hospital. Golisano now has multisensory rooms in every unit of the hospital, which can be used to help calm young patients who are nervous or stressed about their visit.
“Not a single one is the same, because kids are coming into the hospital for different reasons,” says Kristin Brown, a certified child life specialist who works in the hospital’s pediatric sedation center. “Each child life specialist worked with their staff to figure out the needs on their individual floors.”
The rooms include different lighting, music and seating options and toys that kids can play with to take their minds off any fears. “I have seen parents sit literally with their jaws dropped that their child is not screaming, that their child is playing and is not afraid,” says Brown. “I have literally had parents cry because someone has taken the time to make this possible.”
That “someone” includes the local donors who funded the rooms and the entire staff and administration at the hospital who supported the concept. “The whole hospital is on board with this and wants to continue to do better for this population,” says Brown. “They’re still kids. Their needs just need to be met in a different way, and we want to be able to do that for every single kid diagnosed on the spectrum.”
In addition to being able to utilize the sensory rooms, Brown also does a needs assessment phone call with parents of children on the spectrum before their visit to the hospital. “I want to know if the child is verbal or nonverbal, what some of their triggers are, their reaction to those triggers, and what the parents do in those instances of agitation and increased stress,” she says. “Then I come back to our nurses and physicians and say, ‘We have this kiddo coming into the unit and we need to prepare differently to meet his or her needs.’”
That might mean taking their vitals in a different spot than usual or letting the child sit on a parent’s lap during a simple procedure. And these kinds of adaptations often mean that mom and dad are less nervous too, which helps keep kids calm.
“Developmental research shows that kids in stressful situations feed off their parents,” says Brown. “If I can ease the parents’ fears prior to them even coming through the door, we’re already setting the building blocks for a successful visit. We really focus on that psycho-social piece of health care for each patient, and that extends into the family as needed.”
Brown and the other child life specialists at Golisano continue to be on the lookout for new ways to make all children feel at ease and less overwhelmed when they come to the hospital for whatever reason. “We as child life specialists are constantly keeping our eyes on the research for kids on the spectrum or with different diagnoses or special needs,” she says. “We’ve already come a long way, and it’s super awesome to see the impact everything is having on our kids and families.”