Behavioral Matters: Autism — Tips for the Caregiver

DMEC@Work

By Douglas A. Nemecek, MD, MBA

Chief Medical Officer, Cigna Behavioral Health

Autism spectrum disorders is the fastest growing category of serious developmental disability in the United States, and affects people in all socioeconomic classes. In 2014, the Centers for Disease Control and Prevention estimated that 1 in 68 children have been identified with having an autism spectrum disorder.1 This is 30% higher than the previous estimate in 2012, which was 1 in 88 children.1 The increase has led to efforts to improve early screening, early identification, and diagnosis so that interventions and support can begin as early as possible.

Living with a child diagnosed with an autism spectrum disorder brings unique challenges that impact the entire family. Parents are never prepared for the diagnosis—they can feel overwhelmed and not know where to start or what to do. It’s common to feel shock, sadness, anger, and even denial. Siblings can have problems adjusting, and grandparents may not know how to help care for the family. Parents facing these challenges need time to care for themselves in order to be able to care for their child. Here are some tips from parents of autistic children:2

• Start treatment. Work with your child’s treatment team to determine what works best for your child and family.

• Ask for help. People want to help, but may not know what you need. Be specific. Do you need help with the grocery shopping or doing a load of wash? Ask for what you need and use whatever support is available.

• Talk. Just having someone to talk to can help build strength and resilience.

• Take a break. Schedule some time to renew and refresh. Self-care will help you to be more resilient to the stress in your life.

• Find support. Get involved with the autism community. Make friends with other parents who have children with autism. By meeting these parents you will have the support of families who understand your day-to-day challenges.

There are also other benefits and supports available for help. Thirty-eight states and the District of Columbia have passed mandates that treatment for autism spectrum disorders must be covered by insurance plans, often including Applied Behavior Analysis.3 Through the Individuals with Disabilities Education Act (IDEA), school districts provide early intervention programs for children who have been diagnosed with autism spectrum disorders from birth to age 3, and then special education services through age 22.4

Organizing care for a child with an autism spectrum disorder can take time. Understand your leave policies and programs available through your employer and the Family and Medical Leave Act. An Employee Assistance Program (EAP) can also help. EAPs provide legal and financial counseling, as well as short-term counseling to help parents manage the stress that comes from having a child diagnosed with an autism spectrum disorder. With excellent resources and a robust community of advocates, parents of children with autism are not alone and have much improved prospects for success.

References

1. CDC Estimates 1 in 68 Children Has Been Identified With Autism Spectrum Disorder. Centers for Disease Control And Prevention. 2014. http://www.cdc.gov/media/ releases/2014/p0327-autism-spectrum-disorder.html
2. You, Your Family And Autism. Autism Speaks. 2014. http://www.autismspeaks.org/sites/default/files/docs/ you_your_family_and_autism.pdf
3. State Initiatives. Autism Speaks. 2014. http://www. autismspeaks.org/state-initiatives
4. Your Child’s Rights. Autism Speaks. 2014. http://www. autismspeaks.org/what-autism/facts-about-autism