The Autism Advocate

Practical tips and musings on raising children and teens with autism

Newly Diagnosed Child With Autism? First Steps for Parents

Getting a diagnosis is surreal; connecting to other parents is empowering.

When you first get a diagnosis of autism for your child, it all seems overwhelming and surreal, even if you suspected something was wrong. What do you do next? In this blogpost, and next week’s I will give you some first basic steps that will you feel empowered to move forward.  

Join a local support group. There are many places to turn to for information on-line, but you can still feel all alone. That is why it is important to find a local support group to connect with. When Jeremy was little, it wasn’t easy for me to go to my first support group meeting, because it meant I was taking  another step toward acknowledging that Jeremy had a disability and that it wasn’t just going to go away. It felt as if I was becoming a member of a club that I didn’t really want to join. Having just moved to England, the only thing I had in common with the roomful of people  was the label our children shared, but even so our children were so different from each other.  But we helped one another. We shared resources, information, anger, tears, and advice. We gave each other energy and the courage to do what was needed. We shared stories about our children that were too embarrassing to tell anyone else, and we laughed at the absurdity of our situation. And most importantly, over time, the group developed resources that were nonexistent and that our families needed. We created change in the status quo.

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Getting information and connecting with people on-line is great, but there is nothing like meeting people face to face and getting information about your local area that you will need to know. Seek out local organizations as well as chapters of the national organizations listed in my last blogpost. Examples of active local organizaitons include the Special Needs Network in Los Angeles (especially for  underserved families) and NFAR (National Foundation for Autism Research) and ATPF (Autism Tree Project Foundation) in San Diego. Your community probably has active local groups as well.

Learn about any services or funding for which you or your child may be eligible. If you are not already, you and your child will soon be consumers of the various  wonderful systems that  are there to help you. This gives you certain rights  as well as responsibilities. You can read more about these in  Autism Spectrum Disorder: The Complete Guide to Understanding Autism.  Because each state has different ways of providing federally mandated early intervention and education, you will need to know how to access these services in your state. Your local parent support groups can provide you with the information you need to get started in your area.  Meeting other members can be a great way to get helpful information on local resources—you will learn about the different professionals and school districts in your area. Often these support groups have guest speakers including professionals in the area and you can ask them questions. Educate yourself by talking to other parents who have been there before. 

Find out about any insurance coverage you may have. Many states now require insurance companies to provide coverage for autism related therapies and treatments. Autism Speaks has the latest updates on their website on this page. Again, reaching out to local support groups and other parents in your area can help you get a handle on different service providers and what insurance they take.

Next week, I’ll be listing some more first steps to take. With each step you take you will feel stronger, more knowledgeable. Remember, you are not alone—other parents will be there for you.

Chantal Sicile-Kira is an advocate, award-winning author, and speaker known for her practical advice related to autism. Her latest book is A Full Life With Autism.

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