The number of special needs children is staggering—one in 68 kids are on the autism spectrum, with one in 42 boys and one in 189 girls in the United States being autistic kids. If you are the parent of a child who has received an autism diagnosis, there are many resources for you from the government, your workplace, support organizations and your family and friends. Follow these guidelines for navigating life with a child with autism:
Don’t blame yourself. We all suffer from guilt and when our child is hurting, it’s too easy to put the blame on something we did or didn’t do. Research shows there is no one cause of autism and autistic kids probably develop the condition from a combination of genetic and environmental factors.
Learn as much as you can, but understand that your learning will be a lifelong process and you can’t do it all at once. Children with autism show differences in speech and language development, sensory processing, socialization and dependence on routines. While your own awareness—and that of others in your life—is important, getting the right help and support is more crucial, as this mother of a child with autism will tell you.
Early intervention is critical. The prevalence of autism diagnoses has meant heightened observance by medical and educational professionals. Many children are diagnosed at very early ages these days and can start treatment immediately. This can dramatically impact the long-term prognosis. Many states have Early Intervention programs (3 years or younger), and school districts have special education programs, often for preschoolers. Your medical professional also can suggest a variety of programs and services to help. Get started with Autism Speaks’ state-by-state guide to resources.
Find out what your health insurance will cover. Treatment can be expensive, but much of it will be covered. Autism Speaks’ online app will tell you what your insurance will agree to be responsible for and what your state’s laws mandate them to cover. If you aren’t sure, contact your insurance company. Your HR department also may be able to help if you’re on your company’s insurance plan and there are gray areas.
Get organized. Keeping track of your autistic child’s care, insurance and referrals will be time-consuming and long-term. Use the same organizational skills you need at work to keep all your paperwork, schedules and referrals. This will include the Individualized Family Service Plan (IFSP) for children under 3 and the Individualized Education Plan (IEP) for children over 3. Here’s a week-by-week organizational schedule for the first 100 days.
Get help at work. When you have a child on the autism spectrum, having a supportive employer is crucial. Look at the list of Working Mother’s 100 Best Companies—88 percent of them offer support for treating employees’ autistic children. At one of those companies, Monsanto, bulk operations manager Kim Skinner relied on the company’s Rethink autism-support website to set goals and track progress after her son was diagnosed. Besides healthcare benefits, your company may offer employee-assistance benefits, including referrals and stress-management seminars. Flexible spending benefits also will help cover the costs of treatments not covered by insurance companies. Most importantly, seek help getting a flexible schedule from your employer so you can attend medical appointments, meetings and be with your autistic child as much as possible.
Get help at home. Caring for a child on the autism spectrum can be challenging, and you need a break. Ask your medical, educational and work team for options for respite, like paying trained caregivers to be with your child. Insurance and flexible spending plans may help defray the cost of this. Also seek support from family and friends who are willing to learn how to best care for autistic children. And give yourself as much “me time” as you can.
Find good support groups. There are many support groups available for parents of autistic children, some run by professionals and some that are all peer groups. Try a group first and see if it feels like a comfortable fit. The National Autism Association has this tool to help you find groups in your area.