Autism, Seizure Disorder and NJTACC: Kyle's Story

Kyle was diagnosed with autism as a 2-year-old, and at age 11 he was diagnosed with epilepsy, both at CHOP. As he got older, he acquired a talented team of pediatricians that provided the care he needed. When he was beginning to age out of the general pediatric system, his mother, Isabelle, had to learn how to manage his multiple conditions, which expanded to include a diagnosis of Tourette syndrome at 15 and autistic catatonia at 19.

It was a struggle for her to create a comprehensive system by which she could effectively meet her son’s needs while implementing the varied recommendations of Kyle’s care providers, who included neurologists, psychologists, a dentist, a general practitioner, a dermatologist and a home care professional.

How to Find Doctors to Care for People with Special Needs

“You need to find doctors who are comfortable working with people with special needs,” says Isabelle. Finding a general practitioner, along with the number of specialists to address Kyle’s distinct needs, is a considerable challenge. Learning to integrate individualized recommendations into one comprehensive plan for the ongoing care of your adult child is the bigger struggle, says Isabelle.

When she received an email from Alyssa Siegel, MD, Clinical Director, that explained how NJTACC could help people with special needs like Kyle’s, Isabelle said she immediately made an appointment.

CHOP’s New Jersey Transition to Adult Coordinated Care (NJTACC) program provides coordination for health services for people with developmental or intellectual disabilities. NJTACC focuses on transition to adult issues and helps identify medical providers who are comfortable with patients with conditions like Kyle’s. They also aid in providing resources about guardianship and applying for Medicaid or social security.

The program has helped Kyle since he was 19. His mother says she found an amazing resource ay NJTACC, with caring clinicians and staff able to find doctors and health professionals with the skills necessary to treat Kyle’s distinct needs while providing an integrated approach to his care.

“For people who are not sure about preparing for their child’s future, they were able to allay our fears, which was so helpful to us,” says Isabelle. “Dr. Siegel is trying to bridge the gap between pediatric and adult care. The whole process is thorough and personal, and the nurse’s level of compassion is incredible. They ask you questions about things you don’t even realize you need, and we left with a toolbox of information.”

‘Exactly what the Autism Community Needs’

In 2002, Isabelle started a South Jersey-based support group for the families of people with autism. FACES 4 Autism (Families for Autistic Children Education and Support) helps parents with children on the autism spectrum to meet and connect with each and share resources. Her first meeting had more than 200 attendees.

“I put a flier up in a Wawa and a newspaper got a hold of it,” says Isabelle. “The next thing you know, we got 200 phone calls. I just wanted to talk and compare notes with other parents because to have someone to talk to face-to-face was important.”

The support group (faces4autism.org) is the only service for autism in the area of new Jersey where they live and provides information from area experts in response to families’ requests. Dr. Siegel reached out to the group to introduce her services.

“Dr. Siegel’s services happened to be perfect for my family,” says Isabelle. “I made an appointment immediately because coordinated care is exactly what the autism community needs. Our support group can bring things to the community’s attention, but to actually get the care is incredible because general practitioners won’t get on the phone with me.”

How Does NJTACC Work with Patients?

In the process of transitioning Kyle from pediatric to adult providers, Isabelle ran into challenges. When she told general practitioners that her son had special needs, some of the doctors wouldn’t even return her calls, let alone schedule a visit. Another challenge was working with the myriad doctors her son needed to manage his conditions and then deciphering their individual programs to create an integrated care plan for her son that she could follow on her own.

As she shifted Kyle’s care to practitioners she found on her own, there were questions she didn’t know to ask, conflicting instructions that would cause confusion and a delay in the response from the practitioners. All of this prevented her from providing the care her son required to be happy and have a healthy experience of development into adulthood.

Life changing appointment

Her life changed when she first set foot into CHOP’s NJTACC program for an initial visit.

“From the first visit, you meet with a team and the doctor,” says Isabelle of her experience. “You discuss all of your needs, and they ask you questions and then arrange for the follow-up care.”

By reviewing a complete medical history, Dr. Siegel helps to prioritize the patient’s current medical needs. She personally calls each prospective physician, on the patient’s behalf, to determine whether their qualifications and demeanor suits the family’s expectations.

“She knows how to request the necessary information to prepare resources families need. Then she translates medical language into a personal plan parents can follow when they care for their child at home,” Isabelle says.  “This is vital. We have new doctors who know how to improve our son’s life.”

Isabelle called Dr. Siegel eight months after their initial visit, when Kyle unexpectedly needed a new dentist to accommodate a surgical procedure. “She was able to find the people who were comfortable providing the type of care required for someone with special needs.”

That Dr. Siegel was willing to tackle Kyle’s individual needs head on after so many years of frustration brought tears to her eyes, she says.

“When we started going to NJTACC, my son was having weekly seizures,” Isabelle says. “Dr. Siegel helped us find a new neurologist who was able to help my son and his overall well-being. My son has not had a seizure in a year, and I credit Dr. Siegel with helping us find the right doctor.

“We felt alone on our journey before we met her, but she welcomed us and said, ‘We’re here to help.’”