Top Ten Tips for Newly Diagnosed Families

Original  post from Autism Speaks

‘…………..This is a post by Autism Response Team Senior Coordinator Jodi Miller.

Your child has autism.  Now what? You’re part of a new family, a group of people you never planned to be a part of, a life you never planned for yourself, your family or your child.  Your mind is swarming with questions. Who? What? When? Where? How? Why?

Though you never dreamed of or planned for this, things do get easier. Life will be good – it will just be different. You will celebrate this different life and revel in all of your child’s achievements.

It won’t be easy. It takes hard work and patience. Luckily, you aren’t alone on this journey.  There are people, resources and organizations to help, but you will need a roadmap.

1. Get organized

Receiving an autism diagnosis can be overwhelming. Not knowing where to begin or how to move forward is difficult. Get organized. Focus and simplify. Buy 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.

2. Become a research guru

Learning about autism and treatment options will empower you to make decisions. 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. Our Family Services Community Connections newsletter covers many topics. Find information and other resources in Autism Speaks’ Resource Library. Research opportunities and information are also available at the Autism Speaks website.

3. Evaluate your child’s strengths and needs

You know your child best. Your input helps determine therapies and treatments. Evaluate your child’s strengths and deficits. Just like any individual, children with autism 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 your child 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 your child’s medical care, therapies, treatments and education. Your team will consist of medical professionals, behavioral, speech, occupational and physical therapists depending on your child’s 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

You are your child’s best advocate. Learn the laws regarding your child’s educational rights and types of school environments. Learn about federal and state laws and how to write appropriate educational goals for your child. 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 with your child through therapies and play

Find activities that your child enjoys. Adapted activities make your child successful. Many communities have adapted recreational activities like “buddy baseball”, “hippo therapy”, and sensory friendly theatre events. Planning activities your family enjoys helps you bond. TheAutism 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

This is an important one! Parents must learn to take a break. Everyone needs refreshing and recharging. You deserve it and shouldn’t feel guilty doing so. 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 ourRespite 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 your child and autism helps you feel comfortable and accepted and allows your loved ones to help.

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