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Autism Support 101

Tips I Wish I Had When My Child Was Diagnosed with Autism

April 01, 2010
Indiana ranks 7th in the US as having the highest incidences of autism in our local schools, with over 11,000 children with a diagnosis of autism and over 70,000 with a communication disorder or delay. Forty percent of children who receive an autism diagnosis are non-verbal (cannot speak), while another 41 percent have an intellectual disability. Does anyone know why? The honest answer—no one knows.

Autism is the fastest growing disability in the U.S. Finding your child and family a good support system is imperative. Here are a few things to remember:

If you are willing to make the investment and help find an answer on how to increase funding in our autism community, I want to sit down with you and discuss how we can make this happen—please call or e-mail Jane Grimes.
Don't Give Up: If you have an individual in your family with autism, let's be realistic—its tough. Think positively and realize that you will have challenges with the disability and everyone will deal with it differently. It's a family disability and you must not give up.

Listen First: Each person is in a different place when they reach out for support. Listen well and provide advice in simple steps. Overwhelming one another with a ton of recommendations and lists can be confusing. Support is a journey, not a sprint to obtain all of the information at once.

Network: When it comes to autism, there isn't a one-size-fits-all system in place. A good support system will admit what they do and do not know. Remember to listen first, and give answers, recommendations or references last. If you do not know the answers, chances are that someone else will.

Be Humble: Just when you thought the diagnosis was devastating, you'll meet another person who has a child with more challenges than your own. There will be major bumps in the road along the way, so remember to call your support system or group to reconnect when needed.

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Success is Possible: I have seen amazing progress in individuals with autism. Given the right support, environment and determination, success is inevitable. I have seen teachers collaborating and communicating and parents educating one another in order to make a difference in the lives of someone affected by autism. If you receive great support in your schools—let them know!

Be an Advocate: No one knows your child better than you do. If something doesn't seem right or you're not seeing progress—don't be afraid to ask for help! Autism isn't the end of the world. If you don't educate yourself on autism, how can you expect others to understand it?

Focus on Siblings: Siblings get much less time with parents because their sibling with autism requires more time and attention. Give your child a journal and have them write about having a sibling with autism—you'll be amazed at what they have to say. Spend one-on-one time with each child and don't let the time slip away.

Remember Teachers: We have many teachers who can do their jobs and want to do more for children with autism. However, our teachers need more tools and support to help children with Special Needs. Thank those teachers who are doing their part and encourage your school systems to increase the number of teachers who work with children with special needs.

Pay Attention to Data: Don't be afraid to ask for data from schools that work with your child—and ask often. Teachers can collect the data, but they may not always know what to do with the data once they have it. You must be able to show that your child is getting what he needs at each grade level, so data is a crucial part of progress.

Take a Break: It's okay to have a bad day, so don't be afraid to ask for help. There are plenty of people willing to assist when you need a break. The reality is that many parents aren't good at taking a break when they have child with special needs because it tends to consume their lives. Be smart enough to know when you need your break. It doesn't make you a bad parent—everyone needs a break once in a while!

THE TIME IS NOW: Make your Voice be Heard

Where is all of the funding for our children and adults who have autism? The state and local levels, with the massive numbers of children and adults with autism, have very little funding to support so many critical needs.

If you can help answer this question and are willing to make the investment in our autism community, I want to sit down with you and discuss how we can make this happen—please call or e-mail me immediately.

For the thousands of children in Indiana and each day that goes by, another opportunity is missed for our children, schools and communities. We must not give up!

Jane Grimes is the Community Development Director of the Applied Behavior Center for Autism (317-849-5437 Ext. 3 or 1-888-602-8847) and the President/Founder of Hamilton County Autism Support Group (317-403-6705). She can be reached at the previous numbers or by e-mail at grimesje@sbcglobal.net.

Tags: Special Needs

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