In honor of Autism Awareness Month, we recognize all of the amazing things people with autism can accomplish when given the right opportunities and support.
Finding support and resources that best suit your family's needs and circumstances can be a challenge. Not to mention that it takes a tremendous amount of time and energy, especially after a new diagnosis. So remember, Wellthy is here to help. Our Care Coordinators can evaluate community and school resources, tap into local programs, assist with applications, and so much more.
We asked two of our Care Coordinators, Gina and Meredeth, to share a little bit about their experience working with families with autism and special needs, and what it takes to tap into community resources.
What is something that you wish more people knew or understood about autism?
Gina: I can immediately think of three things.
- Children with autism are much more sensitive to the world around them. Sometimes their sensory systems get overstimulated to a point beyond where they can control their body.
- A common misconception is that people with autism are not social. While they may struggle with understanding social cues, this doesn’t mean they aren’t social. Perhaps it is easier for them to be alone, but not always desired.
- There is so much more behind closed doors. Children with autism are working so hard and a small task, like using a spoon or sitting still on a chair, takes tremendous effort.
What’s your process when evaluating specific resources or programs for families?
Gina: I really try my best to understand what the family is looking for, whether it is applied behavior analysis (ABA) therapy, physical, occupational, sleep therapy, or it is simply more opportunities to socialize. I then learn about the child’s personality and what they like (animals, music, food) - this will help steer me in my research. Also, it’s key to understand what therapies or programs the family has already tried, and how their child responded. And lastly, it’s important to get a sense of budget/funding. And throughout my research, I will evaluate what insurance covers and doesn’t, then map out options and potential out-of-pocket costs.
What are some of the challenges families face with navigating resources?
Meredeth: While there are a ton of awesome resources, I find that there are still gaps in special needs support. Compared to other areas of healthcare, financial resources and waiver programs specific to autism are few and far between. For example, low intensity support services (LISS) programs provide additional funding, designed to assist and enhance a family’s quality of life; but, LISS only exists in certain states. Looking for such programs, evaluating the options, and filing the applications - it’s a lot of time and pressure for families.
Are there any community resources that you feel are overlooked?
Meredeth: Probably support groups. Families who receive an autism diagnosis are faced with a confusing and sometimes frightening future that can feel isolating and overwhelming. It’s important that everyone in the family gets the support they need. There are parent/grandparent/family groups, and online groups for kids with siblings with special needs like SibShops. Employers may even offer valuable programs like ReThink and EAP services as an employee benefit. At Wellthy, we build relationships directly with these other benefits programs to ensure families get the best guidance and support.
Any other advice?
Gina: Autism often is never-ending and very demanding on the family, and parents need to take care of themselves. If they don't, they will run out sooner or later.
Meredeth: Go with your gut - you know your child better than anyone else.
About Gina: Gina has worked in the healthcare field for over 20 years, with experience as an EMT, athletic trainer, and nurse. She began working as a nurse at a trauma center in a neurological critical care unit and the emergency department. Gina went back to school to get a Master’s in Nursing, specializing in Informatics, and has served as a project manager for hospital systems and healthcare apps. She has several family members with high functioning autism; her son, however, has severe autism.
About Meredith: Meredeth has a Master’s in Psychology, with a Behavioral Specialist certificate. She previously worked with the Office of Mental Health as a Care Coordinator, and has years of experience working with individuals who have addiction and mental health issues, autism, and aging adults. Meredeth is a mother of five, three of whom have special needs - one being her daughter who was diagnosed at 3 years old with high functioning autism.