Advocating for Your Child with Autism

We are our children’s biggest cheerleaders. We root for them. We protect them. We teach them. And we advocate for them. All children need people who have their back when it comes to school and life in general, but this can be doubly important for kids with autism.

If your child has autism, you might sometimes feel overwhelmed trying to gain access to the best care and resources possible. The good news is that people want to help your child succeed. And good news: Those resources do exist — it’s just a matter of getting plugged in.

Karrie Veteto, director of autism and behavior services, and Jaylen Weir, autism resource specialist, both work at Easterseals Crossroads in Indianapolis. They are passionate about helping individuals with disabilities and have worked together to compile answers to questions that will hopefully help you feel better equipped when it comes to advocating for your child.

Arm Yourself with Knowledge

When it comes to effectively advocating for your child’s needs, Veteto suggests first understanding your child’s disability. “The more parents understand, the more they will know what services are appropriate for their child and what their needs are,” she says. “This includes understanding your child’s strengths and weaknesses.”

Weir recommends that parents familiarize themselves with their child’s rights for education and the law. In addition, it’s important that parents know who is involved in their child’s services and who to go to with assistance.

“Some ways you can accomplish this are by being involved and attending your child’s services and activities, as well as asking your providers questions so that you better understand their goals for your child,” Weir says.

And while this might feel like no small feat, especially if your child has a multitude of health care providers and specialists, Veteto and Weir emphasize the importance of finding an organization system that works best so that you can easily access the information you need for your child at any given time. This might mean:

  • carrying a file with you to every appointment with important health, contact and test information
  • keeping notes on your phone with answers to frequent questions asked
  • compiling a list of questions you have for upcoming appointments

Find the Right Resources

In addition to advocating for your child’s health, you’ll also want to learn how to gain access to vital resources within the local community. This too can feel incredibly overwhelming. Another piece of good news is that the people you are already working with, or online platforms you may already be on, can be excellent resources.

“Parents should start by asking their child’s primary care provider about local resources,” Veteto says. She also recommends looking for Facebook groups and online support groups to connect with, as well as the following organizations for support:

Advocate for Education

We all want our kids to receive the best education possible. To help ensure that your child receives the education they deserve, Weir emphasizes the importance of learning your child’s educational rights.

“The more you know, the more questions you can ask and suggestions you can make in order to help develop an effective IEP [Individualized Education Plan] or 504 Plan,” Weir says.

This might include bringing advocates to your child’s IEP meetings. For more assistance with education specifically, check out INSource at insource.org. It is always helpful to establish good communication with your child’s teachers and the staff. You can also try to connect with others in the community to learn about the supportiveness of local districts.

Know You’re Not Alone

Advocating for your child might sometimes feel like a daunting task. Fortunately, it is a road you do not have to walk alone. There are other parents who are on similar journeys who you can connect with, medical professionals who want to see your child succeed, and organizations designed to help parents manage the challenges they can face when advocating for their child with disabilities.

We want our children to succeed, and it’s encouraging to know there are so many others that want the same, and are there to offer help, support and guidance. Don’t be afraid to ask the hard questions and to stand up for the things you know are right. You know your child and you know what they need best. Trust your gut and move forward in confidence knowing that you are the best advocate for your child and their rights, education, inclusion and health will always be worth standing up for.

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