people, resources and organizations to help, and you will need a roadmap.
1. Get organized
Receiving an autism diagnosis can be overwhelming. Finding acceptance in it and knowing where to begin or how to move forward. Breathe, Get organized, Focus and Simplify. Use a 3-ring binder, dividers and paper. Create sections organizing information (i.e. contacts, schedules, diagnosis, etc.). Tips and forms are available in the Autism Speaks 100 Day Kit.
Learning about autism and treatment options will empower you to make decisions from a place of informed reference. Read, go online and see what others are doing. Contact hospitals, universities and organizations learning about research studies. Your involvement helps you and professionals understand autism. Resource providers like doctors and therapists are in the Autism Speaks Resource Guide. Tool Kits cover a variety of topics ranging from pre-diagnosis through adulthood. Research opportunities and information available at the Autism Speaks website.
3. Evaluate your child’s strengths and needs
Input helps determine therapies and treatments. Evaluate strengths and deficits. Just like any individual, autistics are unique. It is sometimes said that if you know one person with autism, you know one person with autism. People with autism have a variety of difficulties; they also have unique abilities and areas of strength. Identify strengths and hone in on them helping feel proud of their achievements. This provides motivation and support to learn and excel in other areas. Check out a list of autism characteristics and unique abilities in the Autism Speaks 100 Day Kit.
4. Understand insurance/insurance reform laws/waivers
Insurance plans, laws and state waivers are confusing. Treatment options for autism aren’t consistently covered by health insurance. Currently, 38 states have passed autism insurance reform laws requiring certain policies cover autism treatments although some aren’t subject to these laws. The Autism Speaks Advocacy link has information about state and federal laws. Use the insurance interactive tool to learn more about what your plan covers and check out tips and strategies to improve your company’s insurance coverage. The Autism Response Team has information and resources helping you contact your state’s waiver program to learn more about the services in your area.
5. Assemble your team
A team of people including yourself can help you make decisions about medical care, therapies, treatments and education. Your team will consist of medical professionals, behavioral, speech, occupational and physical therapists depending on needs. Tips for interviewing and screening your team are in the Autism Speaks 100 Day Kit. The Autism Speaks Resource Guide lists service providers and can be searched at a local level to find providers that are nearest to you.
6. Know your child’s rights
Learn the laws regarding educational rights and types of school environments. Learn about federal and state laws and how to write appropriate educational goals. Know how to seek legal help if necessary. Tool kits focusing on the IEP process, working with the school community and learning how to advocate are available through Autism Speaks.
7. Communicate and connect therapies.
Find activities that are enjoyed. Adapted activities bring success. Many communities have adapted recreational activities like “buddy baseball”, “hippo therapy”, and sensory friendly theatre events. Planning activities your family enjoys helps you bond. The Autism Speaks Resource Guide has information about community and recreational opportunities. There are several issues of Community Connections focusing on this topic.
8. Care for the caregiver
Everyone needs refreshing and recharging. You will be stronger and healthier and benefit your entire family. Spend quality alone time with other members of your family. Find respite care providers in the Autism Speaks Resource Guide and read our Respite Care and Autism issue of Community Connections.
9. Network with other parents/professionals
Connect with parents and professionals that have walked this journey. They know what works and doesn’t and can make recommendations about service providers and therapies. Join a support group and share with others. Support groups are available in the Autism Speaks Resource Guide.
10. Know how to ask for help
Know how to ask friends and family for help and don’t be afraid to do so. Your friends and family want to help but may be hesitant for lack of knowledge. The family and friends support tool kits helps get them on board. Teaching others about autism helps you feel comfortable and accepted and allows your loved ones to help