Therapist playing with young boy with autism

The Autism Collective Q&A

Children living with autism and their families each have a unique set of challenges to overcome – from learning to cope to finding the right treatment in a complex health care landscape.

The Autism Collective is a collaboration of Easterseals Central Illinois and OSF HealthCare Children’s Hospital of Illinois formed to give these families a single point of contact for cohesive, coordinated care.

Amanda Estes, executive director of the Autism Collective, answers some questions below.

Before joining The Autism Collective, Amanda spent more than 20 years working in health care in various roles. As an OSF HealthCare performance improvement specialist, Amanda realized her passion for working with children with medical complexities and developmental disabilities through her exposure to Almost Home Kids. When she heard about the formation of The Autism Collective, she knew she wanted to be involved.

“I had no doubt in my mind, this was what all my other roles had been preparing me for. This was and is the chance to combine all of my education, experience and passion for vulnerable populations into a role where I can make an impact and improve the lives of so many!”

Q: What is autism?

Two young brothers smiling at Autism CollectiveA: Autism, or autism spectrum disorder (ASD), is a developmental disorder that affects communication and behavior.

Although autism can be diagnosed at any age, it is said to be a developmental disorder because indicators of autism usually appear by age 2 or 3. And autism is known as a spectrum disorder because there is wide variation in the type and severity of symptoms people experience.

According to the Centers for Disease Control and Prevention, autism affects an estimated 1 in 59 children in the United States today.

There is often nothing about how people with autism look that sets them apart from others, but individuals with autism may communicate, interact, behave and learn in ways that are different from most other people.

The learning, thinking and problem-solving abilities of people with autism can range from gifted to severely challenged.

Q: What are the challenges people with autism and their families face?

A: Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges.

Some people with autism may require significant support in their daily lives, while others may need less support. Because autism is characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, the challenges individuals with autism face can have an impact on their ability to function properly in school, work and other areas of life.

The challenges we most often hear from families include:

  • Limited access to evidence-based information and resources
  • Disconnected services, especially for the earliest interventions and for transitioning teens and adults
  • Funding challenges related to coverage for services and a lack of knowledge regarding financial planning
  • Education and communications gaps within the school system and among families in search of mentorship opportunities
  • Limited expertise in treatment and research, especially in our rural communities

Q: What role does a care coordinator play within the Autism Collective?

A: Because no family should feel alone with the countless questions, concerns and fears, The Autism Collective is committed to being that source of coordinated care and support.

We’re connecting families with our nurse coordinator and family navigators to guide them through the complex web of care compassionately and efficiently.

The nurse coordinator and family navigators will help connect families with the most appropriate services for the needs they are experiencing.

They will help coordinate any appointments and therapies to ensure everyone on the care team, including the physicians, therapists and educators, is on the same page with one coordinated, cohesive and customized plan of care.

Q: How will families benefit from the Autism Collective?

Family with young sons with autismA: The Autism Collective will initially serve birth to 14 in Peoria, Tazewell, Woodford, and McLean Counties. We are focusing our efforts on a smaller scale in order to pilot these new services, and then plan to expand in both age and geography as we are able.

Beyond the care coordination services The Autism Collective will be providing, we also want to support innovative ways to improve access to rapid diagnosis and early intervention.

That is why The Autism Collective is partnering with Project ECHO® to launch an ECHO Autism Hub. ECHO Autism utilizes video technology and an expert team to help local health care professionals become more confident in identifying and treating autism symptoms, and in diagnosing and managing a subset of children with autism.

ECHO Autism helps families access autism care in the communities where they live. By moving knowledge and not patients, ECHO Autism grows autism expertise throughout Central Illinois.

Q: How do I get started?

A: Visit theautismcollective.org to learn more or to contact The Autism Collective.

About Author: Laura Nightengale

Laura Nightengale is a writing coordinator for OSF HealthCare. 

She has a bachelor’s degree in journalism from the University of Kansas and worked as a reporter at a daily newspaper for five years before joining OSF HealthCare. 

When she’s not working, Laura loves to travel, read, and spend time with her family, including her sweet and ornery dog.

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Categories: Kids & Family